PFAPA or Periodic Fever Syndrome [Archive] - HealthBoards Message Boards

bdettis

01-23-2001, 05:04 PM

My son is 3 years old and has been diagnosed with PFAPA. I would like to talk with anyone who is familiar with this syndrome.

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ajsmomx2

01-27-2001, 04:46 PM

bdettis

01-30-2001, 01:39 AM

Thank you for the information you shared. I am curious as to the reason why you had your son's lymph nodes biopsied. Was this before his PFAPA diagnosis? How long have you known about PFAPA. Did the doctor's give you this diagnosis 6 years ago? Did they even know about PFAPA 6 years ago? It's been my understanding that they have only recently been giving this syndrome a name.

My son was officially diagnosed with PFAPA a year ago when he was 2 1/2 years old. This diagnosis came after a long and tedious road of tests, hospital stays, reading journals and reading articles on the internet. It wasn't until we went to Shriner's hospital that we saw an excellent doctor who told us about PFAPA and how to treat my son's illness.

We give him 3 ML of Prednisone once his symptoms develop. The only real symptoms I see is his fever which goes as high as 105°F or higher. There are times where I have seen sores in his mouth. But I don't see them during every episode. I have never checked his lymph nodes. Before his fever hits, he usually complains of aches and pains in his arms and legs. You can tell that he feels lousy all over.

Prednisone is a wonder drug. My son was getting these high fevers about every 5 weeks. Once we found out about the Prednisone and administered it the first time, he didn't have a fever for 4 months. Unfortunately, the symptoms came back and he now gets sick every 7 weeks. Does your son get sick every 5 to 7 weeks like clock work? Has the symptoms changed over the years? Gotten better or worse? What is your son's prognosis? How has this affected his schooling?

From everything I have read there is a 2/3 of a change that he will continue to have this into adulthood. What have you heard?

I hope you don't mind all of the questions, it's just that you are the first person I have written to who has a child with this syndrome.

Thank you for responding and your help.

ajsmomx2

02-01-2001, 08:45 PM

bdettis

02-02-2001, 04:12 AM

Anthony

02-17-2001, 09:59 PM

My son is 12 years old. At about 18 months of age he began running series of high fevers. We spent time at the University of Iowa Hospitals and at the Mayo Clinic in Rochester, Minnesota. After many, many tests, the doctor at Mayo finally put him on a pill called colchicine. It is an anti-inflammatory typically used for gout. It seemed to work and his fevers diminished and eventually stopped.

After a while we took him off of the medication. He was without symptoms for a couple of years. A year or two ago he began again with the fevers. Recently he completed about a 5 or 6 day round of them. Typically they begin sort of mildly, increase, peak and then decrease and stop.

We treat him with colchicine again 2 or 3 times a day. Also we give him motrin and tylenol to combat the fevers.

Let me know if any of you know anything else about this syndrome and its treatment.

[This message has been edited by moderator1 (edited 01-01-2002).]

SallyJollow

02-19-2001, 12:07 PM

Re: PFAPA
Hi to you all. I am the mother of a five year old boy living in London, England. After numerous hospital admissions with recurrent fever and other symptoms an infectious disease specialist at GOSH is almost positive it is PFAPA. He has not suggested the drugs I hear you mention, so maybe they are only available in the USA? At the moment they are trying him on small daily doses of aciclovir just to control the awful mouth lesions that occur with this condition, when this has been trialled the docs say they will consider using steroids to control or limit the PFAPA outbreaks.

My son has been suffering from recurrent fevers and associated symptoms since he was nine months old, these episodes coming every month like clockwork. I am so pleased that this support network exists.
Thanks very much. My thoughts are with all of you who struggle with this awful condition.

Kind regards
Sally Jollow

[This message has been edited by moderator1 (edited 01-01-2002).]

bdettis

02-19-2001, 02:11 PM

Hi Sally,

My name is Beverly and I have a 3 1/2 year old who has PFAPA.

I'm sorry that your 5 year old is having such a difficult time with the mouth sores. My 3 1/2 year old periodically gets those sores. It's hard to watch your child go through this!

Prednisone is a steroid which has helped my son. It immediately stops the fever and for him has made his episodes stretch out. Prior to taking the Prednisone he would get very sick every 5 weeks. Now it's every 7 weeks. Prednisone has been a wonder drug for our son. For others the Prednisone brings the periodic fevers on more frequently but still relieves the symptoms.

We went through a whole year and many doctors and hospitals to try and find out what our son has. It was horrible! But at least we now have a name to his illness and there are others out there who have children with the same problem.

Good luck and if you have more questions please feel to post them

Beverly

[This message has been edited by moderator3 (edited 08-23-2001).]

[This message has been edited by moderator1 (edited 01-01-2002).]

cj2josh

03-04-2001, 04:21 AM

Hi
We have a son Josh who is 8 and was diagnosed with pfapa syndrome when he was 5. We live in New Zealand and as far as I have found out I have never heard of anyone else with the syndrome so it is great to find some others out there who are going through the same things as us. Josh is very sensitive to things he eats and is on a low salicilate/ dairy free diet which our peadiatrican said is quite common, and should improve as his immune system eventually stops running in hyper-drive. I was interested to hear that one of the other children got very thirsty before an attack because that is what happens to Josh and our doctor hadn't heard of that. It is good to hear information from other pfapa families. Steroiods worked well for Josh last time he had an attack and were worth using, however they didn't take away all the symptoms.
Carolyn and John.

aherren24

04-23-2001, 07:28 PM

My son, Clay, is 5 years old. He was diagnosed with PFAPA on 4/18/01 at St. Louis Children's Hospital. This was just a few days ago, but our journey has been long. I don't understand anything about this. I would love to talk to someone who is going through this.

[This message has been edited by moderator1 (edited 01-01-2002).]

tmdiggs

07-25-2001, 09:49 AM

Hi I am a 25 yr old mother, I have a 6yr old daughter who has been back and forth to the doctor for her high fevers the highest it has been so far is 105.5 which was yesterday she has been to at least 4 doctors who all say the same thing "that she is fighting a virus" they never give it a specific name, nor can they tell me where it comes from. She has the same redundant test done everytime for strep throat and the same results each time"negative" She has been going through this for the last 3 yrs and no one can seem to pin point her problem I am frustratd and unsatisfied with the so called diagnosis I am recieving. Today I just happened to find this page and this site if anyone out there has any information or insight to offer I would greatly appreciate it.

[This message has been edited by moderator1 (edited 01-01-2002).]

Administrator

01-01-2002, 05:17 PM

The posts here keep this support group forum free to members, like you.

So:
Please post replies on the board, only, to make them available to other members.
Please do not ask for or offer off-board info/sharing.

Thank you!

[This message has been edited by moderator1 (edited 01-01-2002).]

CLee

03-03-2002, 10:56 AM

HI :wave: Hope someone still wants to share info, I am taking kids to Pediactric Infectious Disease Specialist this month. Going to discuss treatment options. Anyone want to share what seams to work for them???

amys

03-26-2002, 07:19 PM

I am so happy that I found this site! It seems that very few people know anything about PFAPA so this message board is a life saver.

My son recently turned 5 and has been sick for the past 18 months. Every 5 weeks like clockwork, he starts running a fever (the highest has been 105 after being on Children's Advil all day), gets sores in his mouth so badly that he can't eat or drink anything, get huge dark circles under his eyes and complains that his bones hurt. My pediatrician was content to think that he just had a cold and pretty much blew us off for about a year. Then about 8 months ago, she mentioned that he might have PFAPA but that she couldn't diagnose him because there's no way to truly diagnose it. All of the bloodwork has come back normal, including several bacterial cultures. She did send us to a Pediatric Rheumatologist who is heading a PFAPA clinic at NIH but he was not much help. He said that he thinks Tristan (my son) has a dual diagnosis of PFAPA and chronic sinusitis, which sort of contradicts the PFAPA diagnosis since technically there shouldn't be any other symptoms.

We were finally sent to an EN&T specialist to treat his sinusitis who ordered a CT scan. Tristan is scheduled for surgery on the 11th of April. He is having his adenoids removed and his sinus passages widened in hopes that it will help to drain the passages that are blocked.

Now, my question is this. Has anyone here had a dual diagnosis or something similar to what my son is going through? I'm worried that even after the surgery the fevers will come back. The pediatric rheumatologist mentioned the use of prednisone as a treatment for the PFAPA, but I've heard such bad things about prolonged exposure to prednisone. Are there any other medications out there to help with this disorder? They also said that it's something Tristan will grow out of. Has anyone here had their children grow out of this? Do the episodes improve with age?

I apologize for asking so many questions but I'm just trying to get as much information as possible.

Thanks!

amys

04-10-2002, 04:23 PM

They checked his IGG...the four levels in and of themselves are ok, but on the low side. But when you add the four levels together, he is 60 points below normal, so we have been referred to an immunologist for sometime in May. He has sinus surgery tomorrow so they want to let him recover before running more tests.

Sheryl Lagge

05-01-2002, 12:28 PM

I am curious? Has anyone ever thought that the PHAPA is something related to immunizations or some type of virus that our children had younger in life and this is the result of it? My daughter didn't start her fevers as a baby and a lot of other notes that I have read, the children also haven't been recognized with symptoms until after the round of immunizations. My daughter had a few seizures after her immunizations and also she had RSV about 8 months. In the middle of everything she started to get Periodic Fevers. First they were every 5-6 wks. apart and now they have been every two weeks apart since last Sept. at that time she was also hit hard with some type of virus which seem to decrease the time in between her fevers? Yes we are giving her a steroid to treat her but I am not comfortable with it knowing the doubts and questions I have with what I have mentioned before. Anyone else have the same type of curiosity? Sincerely, Sheri

Sheryl Lagge

05-16-2002, 11:35 PM

Denice it looks like I am chating with you on two different boards. The every two week fever scares me and sometimes the steroid aborts the fever and sometimes it prolongs it. She is only happy half the time, her lymph nodes are always swollen, more during her fevers. How is your son doing , Brant , I think that's his name? What type of symptoms is he having?
Thank you for your time, and once again my prayers are with you and your family. Sheri

bgrg75

06-16-2002, 01:58 PM

hi, i have a son that is three and he has had a fever every month since he was a year old.. i have been studying up alot on all diseases and treatments.. in some cases the doctors us tagament to keep the fevers away(strangebut if it works =) u know) so my son has just started the medicine well see next month if it works... sincerely bgrg75

this is something hard for a parent to go threw especially when most doctors have never even heard of PFAPA, HYPERIGD, MEDERTERANIAN FAMILIAR FEVER

GOD BLESS US ALL,,,,,THESE THINGS HAVE A NAME BUT IN TWO YEARS OF SEEING A TON OF DOCTORS NO ONE REALLY KNOWS HOW TO TREAT IT

Dndmommy

06-21-2002, 01:16 AM

My son has just turned 2 last week and was just diagnosed with PFAPA. He has had very high fevers, usually between 105 and 108 for over a year now. He on average, gets fevers about every two weeks and they last for around 4-5 days each time and then we start all over again. He is allergic to every medication he has ever had with the exception of Zithromax. He has been in for lab work every 3-4 weeks to monitor his counts since his protein level has been high, we have been in to see the oncologist at Children's Hospital since they thought he had leukemia at first, we have seen the cardiologist since they also thought he could have Kawasaki Disease, and the last doctor we saw was the infectious disease reumatologist specialist at Children's who finally was able to give us a diagnosis. He told us that environmental things, such as poor air quality, smog, and pollution in the city you live in can aggrivate the symptoms and cause the fevers to come more frequently. Has anyone else been told this? I am prepared to move if that is what will help him get better or at least not be as severe as it is right now. I have never heard of this syndrome before so this is very new to me and I am trying to learn as much as possible right now about it. He has been to the allergist and does have allergies to eggs and tomatoes but they told me that it has nothing to do with him being sick since he doesn't have any of those items in his diet at all. We have tried eliminating dairy and wheat as well but found it made no difference. He has also already had his adenoids taken out and his tonsils scraped but that didn't do too much either. He's so little and has been thru so much in his little lifetime that I feel so bad for him and want to know what I cna do to make him feel better. Any suggestions would be greatly appreciated! Please feel free to e-mail me personally since I will be out of town until the middle of July but will have access to my e-mail while I am gone.
Thanks,
Katie and little Dominic
[email address removed]

[This message has been edited by Dndmommy (edited 06-21-2002).]

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[This message has been edited by moderator2 (edited 06-21-2002).]

Sheryl Lagge

06-21-2002, 01:01 PM

Dear Katie. It sounds like the rest of the parents on this health board that have children diagnosed with Periodic Fever Syndrome. Those tests are necessary to rule out major health issues but then they name the unfamiliar/not sure what to call it?-Periodic Fever Syndrome. My daughter went through all the testings also and now she is on a steriod called Prednisolone. She gets her fevers every 2wks. and at the beginning of the fever she gets 5ml. of the medicine which aborts the fever within an hour, otherwise she would have a high fever for 4-5 days. I also just started her on Cimedidine (sp) and that is a generic brand of Tagement. She gets 5ml. , twice daily. We just started her on that and hopefully it will expand the time in between the fevers. We will see.
No I have not heard the enviromental thing, that's a new one. I think that your doctor should prove it before he makes statements that insecures us about the environment. If you notice on the health board there are people from all over this world that have Pfapa children so until proven otherwise I think that accusation would be false. Sorry your family has suffered so many fears. Take care. Sheri

cqmom

07-09-2002, 02:44 PM

Hi
My name is Paige.
My daughter started getting high fevers in December, at the age of 20 months. It came out of nowhere, with no other symtoms. We were in the emergency room, the Childrens Hospital in St. Paul, they could not find anything. We just assumed it was the flu. Since then, Chloe has had fevers every month. Sometimes they last two days, sometimes a week. They have never gone more than seven days. I have a girlfriend whose daughter was just diagnosed with PFAPA, and she advised that I bring that up to my Pediatrician. In April, I did, but was told, that it could'nt be, because of her sed rate.
We were at our wits end, when she gets sick, we don't sleep, everything is put on hold, and I am so afraid to go back to work. It is so hard to see your child that sick.
When Chloe got sick in June, I told my Pediatricain that we need to see a specialist or something. She agreed, and we went to see an Infectious Disease specialist. Chloe had blood drawn to rule out many things. The results were that her sed rate was elevated, as were her IGG and IGD.
To make a long story short, they are 'almost certain it is PFAPA, but they need to rule out cyclic neutropenia, so now she has blood drawn every three days for six weeks! It is so frustrating, because we will be going thru a few more fever episodes, before she can get some relief. Chloe has her fevers every four weeks, like clockwork. It is a comfort to find other moms and dads who deal with this. I was feeling like I was going crazy. I have read some of the messages, and would like to know if Prednisone works better the Cimitidine? Or vice versa.
Thankyou
paige and Chloe

Beckky Daybell

07-19-2002, 12:31 AM

I put this in another category also but I figured it wouldn't hurt to put it here too. I guess my situation sounds a little different but maybe someone can offer me some help. I noticed my baby's fevers when she was four months old, she always felt warm, now she barely turned 17 months and she still has them on a daily basis. The difference is her fevers are DAILY at 100.0-101.0 Just within the last 2 or 3 weeks I've noticed that when I put her down for long nap, or first thing in the morning when she wakes up her fever is very close to normal 98.6-99.0. But then within hours it jumps easily 2 degrees to 100.6 or so. I can recall several times that we have gone to the doctor with much higher temps (104-105) but no answers (virus ect.) No symptoms though. I've begun wondering if she is having problems with her body regulating its temperature...I know it can be done through breathing, sweating, ect. I feel like I'm really stretching to find some answer, and honestly I try not to think about it but it's on the back of my mind when I pick her up and she always feels uncomfortably warm. One other thing, she has always been given the category "failure to thrive" because she is small. at 10-11 months old she only weighed 12 pounds. however now she weighs almost 19 pounds at 17 months, so she has grown. She eats more than my 5 year old most of the time... She can down 3 hot dogs if I would let her (my babysitter did once). As far as tests we have done SO many. We had blood drawn so often they finally had to start taking it out of the veins in her head because everything else was to worn out. They did the IGg, Iga, and the others, her Igg and Iga were both on the low side so we saw an immunologist and she was tested for TB, arthritis, and many more... At one point her CBC and sedrate came back scary and they thought she had cancer so we saw an Oncolgist, but they improved. We've seen a cardiologist because she has a heart murmur but they say it's innocent. We saw an infectious disease doctor, and they thought she may have Marfan's Syndrome because of her extremely long finger and toes and the heart murmur. But there are not real tests except for ultrasounds of the heart, which we did and everything looks good. I don't know what the test is called but her "liver levels" have come back higher than normal multiple times and her liver has felt larger than normal but last time at the doctors she said it felt normal? Part of me says I should just give up and let time take it's course. We haven't done any tests for at least 4 or 5 months except a CBC which was normal. I think my doctor is frustrated, she wants an answer like me. I'm not pushing the subject I'm sure there are children that you never know what is wrong. But maybe someone will have an idea. Thank you! Becky

carole zingeser

07-20-2002, 04:48 PM

Hi,
After years of fever/sore throat/cancer sores/no appetite every 3-6 weeks, a doctor finally suggested FAPA about 2 months ago. I'm so glad to have found this web site because we also felt we were the only ones going through this. Feelings like it must be something we're doing wrong, etc etc. Now I feel he most certainly has this syndrome and we can start to deal with it.
We have tried the Prednisone two times and it definitely does seem to bring down the fever and bring up his energy level. When I look at his throat it still looks yucky, but he feels so much better, I don't mind so much.
We have the name of an immunologist who we will call on Monday. I'll report back any interesting news.
Glad to know you're all out there, and that we're not alone.

[This message has been edited by carole zingeser (edited 07-16-2003).]

Jay Tor

08-26-2002, 06:40 AM

Here's a list of the major immune suppressants and immune modulators:

prednisone
cyclosporine
rapamune [sirolimus]
methotrexate
tacrolimmus
thalidomide
azathioprine
mycophenolate mofetil [MMF]

Plus there are MAO inhibitors which specifically target the T-Cells of the immune system. [Don't know which of the two major parts of the immune system is responsible for this condition.]

I'm not a PFAPA parent but am familiar with most immune supressants.

hollygolly

04-12-2004, 06:42 PM

Hi
my son is 6 and was diagnosed with periodic fever syndrome 2 yrs ago.He has night sweats,high temp,diarrhoea vomitingsometimes),mouth ulcers,stomach aches and leg pains every 6-8weeks.He recently stopped having these attacks then restarted for no apparent reason.He also seems to have a rash related to sunlight that eases with piriton.Have any other children with periodic fever had an itchy rash mainly on face and ears??Its difficult to know whether this is something unrelated.
thans Jane

PatriciaB

04-13-2004, 09:28 PM

Hi everyone, My son Paul is now 11 years old and has had these periodic fevers since he was 6 months old. We went through basically all of the above mentioned tests, including the lymph node biopsy. He was finally diagnosed by NIH in Betherda, Maryland in 2002. There are several different forms of periodic fevers, most of them are diagnosed by genetic testing. I don't want to get in trouble with the moderators here so I'm trying to be very careful!
I am not any kind of a medical person at all, just a parent who has dealt with this situation since my son was 6 months old. Anyway, some of the different periodic fevers are HIDS, TRAPS, FMF. My son was finally diagnosed with FMF, mainly by the process of elimination. Neither his father nor I have the mediterranean background but the Colchicine that he is now on was found to work only on patients with FMF, it won't work if your kids have one of the other gene mutations that cause the periodic fevers.
Unfortunately, the Colchicine only works for so long, then the episodes start to return gradually, then it's time for another dose increase. In fact I know he's due another increase now cuz we just spent all of yesterday in the ER having him treated for severe dehydration due to another episode. He experiences the high temps, 105 to 106 degrees, stomach aches, nausea, joint pain, rashes, chest pain when he is having an episode.

Rodgers747

06-30-2004, 12:59 AM

My 6 1/2 year daughter has PFAPA. I have noticed a few odd things prior to her onset of fevers. Nov 02, my husband took both our children for flu vaccinations. By Dec 02 we had problems with hives. This went on for 6 months, with numerous allergy tests. And was told all is normal, as well as the blood work. We were prescribed allegra, which helped a bit with the hives. June 03, she began to wet the bed, and high fevers. The doctor thought this was a sign of a bladder infection, even though her tests proved otherwise. They prescribed antibiotics which we thought was the wonder drugs. This went on every 2 weeks till October 03, her fever lasted 15 days, then progressed into every 2 weeks like clockwork. She only wanted ICE COLD water. SHe was tested for bladder infections (which were negative) and everyone was dumb founded. I began to do my own digging to find my husbands family had lupus scattered thoughout one side. They then did a lupus test (ANA) which came back positive. At that point were sent to Pediatric Rhumatologists. More tests. IGD, Iga, C-Reactive, Sed tests, and more, all except IgD were positive. All symtoms pointed to PFAPA. I still sometimes wonder if this is correct and I'm a currently seeking help with a specialists.

But her fevers at one time came every 2 weeks like clock work. Until I read that in some Immune disorders, artificial sweetners and dairy products (some dairies give the cows hormones to make more milk) which can cause flare ups. So i stopped the artificials sweetners and bought milk free of RBST. Well her fevers went to every 4 weeks, then 6 weeks. Althought this next bought gave her 2 fevers in one week. Tuesday each time, with fevers at 105.9 and I was ready to rush her to the E.R. Because Motrin works for a short period of time and takes 1 1/2 hours to help.

Before her tests for Lupus came back positive, I decided to get copies of her records. I asked them could this be an immune disorder and told them about the lupus. She then decided to test for lupus, (which was postive - ANA test)

After getting her lab work copies I found abnormal blood work from day 1.

I would like all parents to consider getting copies of lab reports and doctors visits. This is you tool as well as the doctors. Get them, make copies, and start digging. Don't always trust what you are being told. After all who cares more about our children. US, the parents, who live in the HE//, with the kids.

But too my Daughter symptoms. Swollen lymph nodes, swollen throat (cultures -- Strep always Neg), High fevers, chills, legs hurt, swollen eyes, swollen cheeks, swollen hands, not hungry, and dark circles.

My answer to the vaccination theory! I think it is possible. I look back to her infancy and toddler years and see that this was there. I just didn't notice it and it happened about 4 times a year. Which I though was the flu or a cold. After the flu shot, all HE// broke loose. BUt funny how no one else got what she had. Odd that she doesn't get the flu like the other kids.

Take care

ourgirl

07-30-2004, 10:11 PM

Norlalos73

08-24-2004, 02:22 PM

Hello all,

My 3 year daughter is having some similar problems as many of your children here. Her pediatrician is leaning mainly to PFAPA, but I am not sure that would be a correct diagnosis. She runs fevers that last anywhere from 4-7 days, approx. every 2 MONTHS. Recently she has been complaining of headaches with the fevers. She does not complain of any more problems, there are no stomach aches or mouth sores, no swollen lymph nodes, no other infections at all. We've had strep tests done and all are negative. She recently had a CT scan and that was normal, her white blood cell count is always very high during these episodes. We just went yesterday for blood tests for IgD and IgA, don't have the results back yet. I am just wondering with all of you parents going through this, does any of this sound like what you have experienced? The doctor can't really find anything wrong with her other than these crazy fevers and those aren't even clockwork. Any advice? Thank you!

Norlalos73

08-30-2004, 11:42 AM

Ok, just an update...

IgA was normal...she's had some chest xrays and ct of abdomen and those are normal. Still in the dark and her ped is now saying that he is not sure. Interesting thing tho, there is a five year old child that uses the same ped that we do and this child is presenting almost identical symptoms as my daughter. They have diagnosed her with CSD (Cat Scratch Disease) of the liver. My daughter had the bartenella test done, and he said that the levels were a bit "off but not high enough to amount to anything". I'm just stumped. She's been on Orapred for the past 4 days and that always knocks the fevers out for a day or two so she had been able to go out and play here lateley. I keep a log of all her fevers and it is crazy - she ran fever for just over 2 weeks! Anyway, wish us luck and hopefull all of you are doing well too.

Tracey4567

09-21-2004, 05:04 PM

Hi
My daughter Maddie has PFAPA and recently had her tonsils removed. She hasn't fevered since. Tonsillectomy is a "cure" or a lot of PFAPA kids, but not all. Maddie had been having her monthly fever episodes for about 2 years or so. [ removed ] If you believe your kids have PFAPA you will need to also rule out the other genetic forms of fever syndromes by doing genetic testing for HIDS, TRAPS and FMF just to name a few.

Trishalee13371

09-30-2004, 01:40 AM

So has your daughter had any episodes since the tonsillectomy? How did she handle the whole ordeal? My daughter is 7 and after almost 2 years of no episodes, it seems like they are coming back. The past 3 months it has been roughly 28 days each time. What are the bad things about Predisone? We went through this from probably age 2 to 5 and now after 2 years, its recurring. UGH !!!

cheleinpgh

10-15-2004, 12:18 AM

My son is 5 and was diagnosed 5 months ago. the nights spent in the er for steroid treatments are so agrevating. all the doctors asking us what it is, what do we do. my doctor is sending us to a immunologist then he recommends the adenoids and tonsils be taken out. has anybody tried this? does it work?

PatriciaB

10-15-2004, 12:39 PM

Have all of you that have posted recently had genetic testing done on your kids to determine for sure that they have true PFAPA and not one of the genetic fever disorders? They should be tested for FMF (Familial Mediterranean Fever) also for Traps and for Hids. Pfapa greatly mimics these genetic disorders but each one has specific differences and they must be treated differently.
I know how hard it is to get a doctor to take you seriously and to convince them to do the testing, but Pfapa will eventually be outgrown, the genetic disorders will not.
In many cases of true Pfapa, the tonsillectomy will help and almost completely cure the child, in the cases of the genetic disorders, it will have no effect. [ removed ]
One more thing, don't let a doctor discourage you from having the genetic tests because you or the doctor don't think you have the genetic family background. My now 11 year old son was diagnosed with Familial Mediterranean Fever and unless either his father or I had family there 2000 years ago, we don't match the genetics either!

Pat

Jennyclev

10-19-2004, 07:04 PM

My daughter is 15 months old and has gotten a fever every 2 weeks( like clockwork) since she was 6 months old. They have ruled out PFAPA because she has not had mouth sores. However her lympnodes are usally swollen. She has been hospitalized for her fevers 3 times. Her fever spikes to 105-106 (despite tylenol and motrin), lasts 4-5 days, she vomits, and she completely stops eating. Because she stops eating she loses a lot of weight. Her doctors are completely clueless but they are worried because every cbc they have done her wite count has been high. If anyone can give me any ideas on this I would greatly appreciate it.
Thank you
Jenny

burywhite

11-29-2004, 04:15 AM

Hello all.

After reading as much as I could find on Marshall's Syndrome or PFAPA, it definately seems that most cases are with children. I'm currently 22 years old, and have been suffering from this since May '04. My fever always comes back every month. I just use a lot of aspirin and i take ranidine to keep my stomach acids down. Prior to taking ranidine, I tried every 'heartburn' remedy but none worked effectively. My esophagus became inflamed and started to bleed (pharyngitis). I get sores in my throat making it very sore to swallow, and my lymphnodes generally swell pretty big. Whenever blood tests were done, white count was always very high but no infection could ever be found. I have all these symptoms, but seem out of the age range to get this. The fevers are pretty bad, and the chills are intense. I was fortunate enough to have a doctor spend a lot of time researching my case and this is the conclusion she came to, although no official diagnosis has been made. I see a specialist again on Dec 1st, and just wanted to hear some feedback from people who may have it, and have tried different medications.

DENDEKRUIF

12-05-2004, 01:45 AM

dear burywhite,here's a thought. Is it possible that when you were younger, you had periodic fevers and your parents thought you had the flu or something else.The reason is I have a son with hyperIgd syndrome and later on in life it will come back with a vengence, as what they don't know...His fevers were every 6 wks so the doctors thought it was a virus of some kind. He also had severe acid reflux and will probably have dentures by the age of eighteen. With severe acid reflux you are not able to digest food proteins like casein in milk products. Prayers for us ...denise

mdean

12-07-2004, 12:54 PM

Please help! I am so confused. Here is my story:

My 17 month old son was diagnosed with Periodic Fever Syndrome 5 months ago. My doctor has been doing research for us and has just recently discovered that the sores in his mouth and enlarge tonsils are related to this syndrome. We have tested for every immune disorder and cancer you can imagine. Our doctor now wants us to see a Infectious Disease specialist. My husband is against anymore testing and really feels that this syndrome does not exist. My son appears healthy except when on a fever cycle. It is our understanding that there is no long term effects of PFADA and the only damage that can be done is from Medicines used to treat the fever. I myself would prefer to go to a specialist.

Do any of you see a specialist? Are you just treated by your Pediatrician? I am also finding my son seems to have been diagnosed much earlier than your children. Is it because your children were not diagnosed earlier or their fevers appeared later?

:confused:

Trishalee13371

12-07-2004, 02:48 PM

My daughter was first diagnosed at age 3. She is now 7 and occasionally gets it. There are several websites and studies been done on this disease. Put it in your keyword and research this.

It is very frustrating indeed. I have dragged my daughter through blood tests etc... and unfortunately this is what it has boiled down to.

I felt the same way your husband did...maybe they are misdiagnosing or something. But- sure enough after 5 days she was well again. It was so hard to believe during the 1st or 2nd day of fever that she would be well. But- she always came back around (but after 5 days) !!!

Sandstroms

12-07-2004, 04:19 PM

12/7/2004
We have a 14 month old daughter who has been having high fevers 103-106,, every 3-4 weeks, lasting 3-4 days since she was 9 months old. We too tried tylenol and ibuprophen with very little effect. It can be so frustrating to visit the doctor or ER and have them say, it must be some sort of viral infection! We saw an infectious disease specialist yesterday who says she most likely has PFAPA. We have had blood tests and urine cultures and x-rays in the past that came back normal. She has not had any kind of genetic testing, and probably won't unless she has other symptoms that indicate them.
Our specialist recommends prednisone- one dose orally at the onset of the fevers. We will try it next time, which should be around Christmas.
I do not see a link in our case with immunizations, she did not have any from the time she was 6 months until she was 12 months, and her fevers started at 9 months.
It is also not probably linked with environmental factors- smog, etc.- since we live in a rural town with no industry.
Our daughter has not been old enough to communicate to us other symptoms that accompany her fevers, but on a few occaisions she has refused to eat and drinks only very cold things. When her fever spikes, she is miserable and only wants to cuddle. When her fever drops below 102, she will often play, like there is nothing wrong.
My husband's brother had fevers like this when he was a child and they did remove his adenoids and tonsils, to no effect.
We hope this really is PFAPA, that the prednisone helps, and that she will grow out of it.
Whether this is the case or not, we take comfort in our faith in a God of love who will one day take away all our tears and sorrows.
Until then, we welcome all your counsel as we are just starting this journey!

DENDEKRUIF

12-07-2004, 08:11 PM

Don't mess around. There are only three specialists that deal with these fevers and possible autoimmune diseases in the USA and that is one on the east and west coast and one in childrens hospital in Omaha,neb. Predisone should help but you better go to immunologist. If you have faith in your doctor have them run immunoglobulins. IgD etc...I fought the doctors for 2 years. My son's so called viral sickness ended up as hyperIgD syndrome. Chances are it won't be yours. It might not be so much that they out grow as a type of remission and later on in life it can come back with a vengence. Prayers for us....denise

mdean

12-08-2004, 02:57 PM

Thanks for the info. We have already tested all immunogloblins. They have come back normal. My husband has agreed to a consultation with a Pediatric Infectious Disease specialist in Columia, Mo. We go next Wed. Our prayers are also now with the families dealing with these diseases, I pray for answers and cures for children with all illness. It is so difficult to see innocent children suffer.

nsd

01-02-2005, 11:19 PM

Hi, new here and full of questions. My 3yr daughter has been sick for a yr w/ fevers ever month. We have just seen an infect. spec. who mention PFAPA and started test. I never had heard of such a thing and still lost trying to find info. I just thought I was nuts and things I was doing was causing her to be sick. From what I can tell it sounds like what she has although we need to rule out if it was viral infections for the past yr. She has high fevers of 103-105 for 3 days every 4-6 wks & mouth sores. She started the fevers in Nov 03 and had her 1st seizure. She was found to have RSV in Jan 04. Easter 04 she was in the hospital for 4 days w/ fever after 3 seizures. She has had an EEG and w/ her brain wave pattern she could develope epilespy if she has more seizures. They thought the fever was caused at Easter by a mouth virus but we are thinking now it was the PFAPA. The infec spec mention something about slow growth rate but I haven't seen any of you mention it. My daughter is a yr off her growth. She just turned 3yr and wears a 2T pant. I did see mention of dark circle under the childrens eyes, is this common?? My daughter has this too. She too gets whinny and complains a lot the day or two before it hits. We use Tylenol and Motrin bcse we are scared of the seizures. The anti-seizure meds are not user friendly. We decided to treat the fevers. No contection I can see w/ enviroment or child hood shots. I did have her have a flu shot in Nov 04 prior to the infec spec appointment thinking I couldn't handle her getting the flu. Scared she was going to have a terrible reaction but we haven't had a fever since Halloween. I don't know what this means, if the shot helped or if she doesn't have PFAPA and just was sick for a yr. I see the doctor this wk. Would like advise on questions to ask, meds to take/stay away from, test to have taken, etc. etc. Thank you and sorry to hear so many children have it worse than my daughter. I have been at the end of my rope several times, crying that I can't take her being sick again and thought I was alone.

kisa

01-06-2005, 07:42 PM

Bless you all, & your kids, my son had experianced this as well, but he had many medical troubles to begin with. But the fevers were norrowed down to damage to area of the brain that controls body temp. what worked for us was to keep him cool & very aware of his enviormental tempatures both in school & home. Not sure if this can help, but I do want to let you know that my thoughts & wish's fpr pain free days are sent in your direction.

DENDEKRUIF

01-19-2005, 01:37 AM

dear nsd:The specialists do not know what is the cause. There has been talk about immunizations. Your child is not alone. there are hundreds of kids that have fevers with unknown causes. Have your childs immunoglobulins checked out. My son had fevers for two years that we know of. Every 6wks on the nose. the reason your child is whinny because the temp probably starts out low grade. I know you are dealing with a 3yr. old. My son was old enough to go back and use an old fashion thermometer.It picked up on the start better. His would be normal then a little elevated the first day.the fevers messed around the first day of a two day session. Then it would go full tilt until it reached a high then it would drop and things seem to go back to normal.There was nothing scarier than a 106 temp. Keep the head cool, and feet. Popscicles, I think there are ped popscicles too. Crushed ice, those new fever sheets for the head. I was lucky we did not have fevers but every 6wks. Some parents have them every two weeks.Keep checking things out. Hang in there...Prayers for us..Denise

wiles

02-05-2005, 06:01 PM

Has anyone heard of adults getting this disorder? For 5 monthes I have had a high fever every month, and I can't imagine that it is just a coincidence. Thanks.

Chapp2

02-09-2005, 03:13 PM

We have just been told that our 3 1/2 year old daughter has Periodic Fever Syndrom (P.F.A.P.A.). She has had reaccurring high fevers for the last 1 1/2 years with no explaination except that she had swollen glands, a red throat, no appetite and was tired all the time. My mother kept telling me that my younger sister had the same symptoms and finally when she was about 7 years old, they took her tonsils out and it all went away. This from what I have read is sometimes a cure for the problem. It is also hereditary. I am willing to have my daughters tonsils taken out if her doctor will proceed. It sounds like a simple (of sorts) solution to a very uncomfortable illness for my daughter. Any comments or suggestions from anyone would be appreciated.

PatriciaB

02-14-2005, 03:42 AM

Hi Chapp, the best advice I can give you is to keep researching! My son (now 12 years old) has been diagnosed with one of the genetic periodic fever disorders but it took us 8 years to arrive at that diagnosis. I know we're not supposed to post web sites on this site so keep looking for periodic fevers and support groups. What I have learned is that Pfapa specifically is not a genetic disorder in itself. There are several of those, such as FMF, Traps and HIDS. they are diagnosed through genetic testing and they are all treated differently. The tonsillectomy might help if it is pfapa but it won't make any difference, of course, for the genetic disorders.
To the person who posted just before you, the genetic disorders will be carried into adulthood. The main thing is to get a proper diagnosis because as I said before, they are treated differently, and some can cause severe, even fatal problems if not treated.
A study is being done on periodic fevers at the National Institutes of Health in Bethesda, Maryland. The waiting list is several months long but I know that the doctor who is in charge of the study, Dr. Dan Kastner, is very open to calls from physicians who need guidance in diagnosis and treatment options.
I hope this helps.

Sadbluize

03-01-2005, 02:29 PM

I have a 7 year old son who was diagnosed with PFAPA three years ago as well as a five year old daughter just recently diagnosed. When they are having an episode they are treated with a single dose of Prednisone. This usually aborts the PFAPA with two hours. It works like a charm! Rather than being sick for six days they are only sick for about a half day. Because of recurrent ear infections my son did go on to have his tonsils out and has not had an episode of PFAPA since. Not all doctors will consider a tonsilectomy and since children usually outgrow PFAPA the question still remains whether or not the tonsilectomy cured the PFAPA or he outgrew it. I have done tones of reseach so feel free to email me.

[ please carefully review the posting rules - no emails ]

mdean

03-08-2005, 09:46 AM

Since my son has been diagnosed with Periodic Fever Syndrome, I have been doing alot of research and talking with other families with this illness. I recently spoke to a mom who has been using a hypothalumus enzyme which she says stoped her sons fevers. She was recommended to use the enzyme by a natural pathic physician who believes that children with PFAPA have an immature hypothalumus and that eventually their bodies adjust between the ages of 6-10. Our insurance does not cover these types of physicians or the enzymes (about $100) for a 30 day supply. I obviuosly will try them instead of steroid treatment but I would like more information. Has anyone else heard of this theory?
Thanks!

pennmatthews

03-09-2005, 10:57 AM

My daughter has had PFAPA since she was 3.What a long rode though to figure out what she had. We were told to get her tonsils out which we were glad because now she doesnt get those sores in her mouth--she still gets a tad sore throat and every other symptom but no sores

pennmatthews

03-09-2005, 11:11 AM

Did you ever get her tonsils out? I did with my little girl and it helped a little

jasonjoshua

03-26-2005, 01:57 PM

:confused: Hello! I hope some of you are still reading this board. I would like to get some opinions about my son. He is 4 and a half. He was diagnosed with croup about a month ago. He was given antibiotics and penicillin, neither helped. He continues to have red, swollen tonsils, swollen lympnods and a fever that comes and goes about every 5-6 hours. Yesterday we took him to get a second opinion. This doctor ruled out leukemia (thank the Lord) and flu. We will have more results on Monday. But in the meantime, he is VERY irritable and emotional. PLEASE any thoughts would be greatly appreciated!
Lori

PatriciaB

03-28-2005, 12:10 PM

I'm sorry to hear about your son. I hope you get some answers soon. I don't know which is worse, getting a very scary diagnosis, or remaining in the dark about what's going on with them!
Maybe if you started a new thread, you could get a more helpful reply. By Pfapa or periodic fevers, we are referring to kids who have fever disorders, they have fever episodes lasting anywhere from 2 days to 7 days and they have these episodes every month, like clockwork, some kids for years! I'm sorry I couldn't help you more, as I said, I hope you get some amswers soon!

missyreg

03-29-2005, 11:48 AM

Thank you for your reply. My son was only offically diagnosed with "Periodic Fever Syndrome" last year. We had no idea what was wrong for for 4 years. His symptoms started at age 2. The reason for the lymph node biopsies was that one of his symptoms was huge lymh nodes in his neck also high fevers like your son. Mostly in his neck but other places also (under arms and in groin area.) During our "journey" to diagnosis there were 2 different doctors who felt a biopsy of the lymph nodes was important to rule out other problems causing the swollen lymph nodes. I agree the Prednisone does spread out the time between episodes. I can share more of my story with you if you would like. I look forward to hearing from you. It is nice to hear from others who are dealing with the same types of problems.

My 2 year old son is also having reoccurring high fevers for 1 year now. He started on his first birthday. His fevers reach 106.4 but mostly are 104-105 for 5-6 days. He has been to an infectious disesde doctor, 3 ENT'S, AND HIS REGULAR PEDIATRICIAN. HELP!! His pediatrician says that he is picking up virusis. When he gets a fever he normally gets and ear infection, sinus infection or almost always tonsilitis. Does your son also get these infections? He usually has spots on his tonsils and if he also has an ear infection or sinus his pediatrician perscribes and antibiootic. I think these meds may be hurting his condition. What do you know?
[This message has been edited by moderator1 (edited 01-01-2002).]

missyreg

03-29-2005, 11:59 AM

My 2 year old son is also having reoccurring high fevers for 1 year now. He started on his first birthday. His fevers reach 106.4 but mostly are 104-105 for 5-6 days. He has been to an infectious disesde doctor, 3 ENT'S, AND HIS REGULAR PEDIATRICIAN. HELP!! His pediatrician says that he is picking up virusis. When he gets a fever he normally gets and ear infection, sinus infection or almost always tonsilitis. Does your son also get these infections? He usually has spots on his tonsils and if he also has an ear infection or sinus his pediatrician perscribes and antibiootic. I think these meds may be hurting his condition. What do you know?

missyreg

03-29-2005, 12:09 PM

missyreg

03-29-2005, 02:20 PM

My 8 year old daughter has had these symptoms for the past 3 to 5 days. Usually she has 6 to 8 fevers a year lasting 4 to 5 days. She started a new cycle on Jun. 17, 2004 and has had the fever 3 times with the latest ending today7/30/04. They had started a second batch of blood work, CT scans, and a series of doctors including and E.N.T.they are leaning toward taking out her tonsils, she never has a positive strep test but the tonsil look like big fuzzy cotton balls. OTC fever reducers offer little help. I was wondering if any other children have had success/relief with the removal of tonsils? It is hard to not know what to do for your child :confused:

To respond to ourgirl. MY SON IS GOING THROUGH THE SAME THING RIGHT NOW! HE HAS THE FEVERS (104-106) EVERY 6-8 WEEKS. HE HAS BEEN SICK TEN TIMES THIS PAST YEAR. HIS STREP TEST S ALSO CAME BACK NEGATIVE (ALL 10 OF THEM!) I TO AM NOT SURE IF THE TONSILECTEMY IS GOING TO HELP OR MAKE THINGS WORSE. THEY ARE ALSO LEANING TO TAKE THEM OUT. HAVE YOU FOUND OUT ANY NEW INFORMATION?

missyreg

03-29-2005, 02:51 PM

Did you ever get her tonsils out? I did with my little girl and it helped a little

I'M SO THRILLED I FOUND YOU. MY SON IS IN THE SAME SITUATION. WE ARE TRYING TO DECIDE IF WE SHOULD GET OUT HIS TONSILS. HE HAS BEEN HAVING REOCCURRING HIGH FEVERS (104-106) FOR 1 YEAR AND HAS BEEN SICK 10 TIMES WITHIN THE YEAR. HE HAS NOT BEEN DIAGNOSED. I'VE BEEN TOLD SEVERAL TIMES THAT HIS FEVERS ARE DUE TO VIRUSIS AND THAT HE HAS TONSILITIS. wHAT DID YOU FIND OUT?

PatriciaB

03-30-2005, 02:04 PM

Missyreg, would you go to the other thread that's running called Familial Mediterranean Fever? FMF is one of a few different forms of periodic fevers. While PFAPA is not genetic and will be outgrown, I know of several kids, one of my own included, who had the fevers, went through genetic testing and have been found to have either FMF, Hids, or Traps. Unlike Pfapa, these will not be outgrown. They are there for life. Has your child undergone genetic testing to eliminate the possibility that he may have one of these? No tonsilectomy will help him if he does. And for those kids who have the tonsilectomy and do not get complete relief from the episodes, chances are they may have one of the genetic disorders.

missyreg

03-30-2005, 02:13 PM

To sadbluize- My son is 2 years old and has been having reaccuring high fevers (104-106) for 1 year. They usually last for 5-6 days. I'm not sure exactly what PFAPS is but I plan to discuss it with his infectious disease doctor. Along with these fevers he usually gets ear infections, sinus infections, and almost always tonsilitis. There was only 2 times out of 10 where he had no visible sign of infection- just the fever. Every strep test came back negative. Does PFAPS usually have these other infections or just fever? I am considering getting out his tonsil and adnoids? Any advice or info?

missyreg

03-30-2005, 03:27 PM

Hi, PatriciaB! Thanks much for your reply. My son has not had any testing yet. I'm in the very preliminary stages of getting away from his pediatricians diagnosis (viral infections)and having just recently heard of PFAPS & FMF, I'm trying to figure out what to do next. We have an infectious disease dr. and he claims it is viral tonsilitis. When you say FMF is genetic that means some family member somewhere would have had it. Right? I went back 2 generations and no one seems to have had periodic fever. Did you actually trace back to someone who had it? Does your child have the arthritic component? Mouth sores?

missyreg

03-30-2005, 03:42 PM

Pennmatthews- hi! My son has reaccuring high fevers (105-106) every 6-8 weeks lasting 5-7 days. I have just begun researching PFAPS- so all this info is overwhelming but I'm relieved to know we are not alone. With the high fevers there was usually a form of infection such as ear, sinus, or viral tonsilitis. We are planning on having my sons tonsils out in a few weeks. In what ways did the tonsilectemy help your daughter? Where were the sores in her mouth? On her tonsils or were they canker like sores in the mouth but not on the tonsils?

IGotPFAPA

03-31-2005, 05:47 AM

Hi...

It looks like you have forgotten about this page... It's a long time ago that anyone have written anything about PFAPA... I dont know if anyone are going to read this, but I will write anyway.

Im a girl, and I'm 18 years old, and form Denmark. I got this desease. PFAPA. I was the first one who registred with PFAPA in the world... This happand in 1987, the year I was born. I have been sick my whole life, and it has affected my school, work and lovelife. No one can look at me and tell that I have this desease, but if they talk with me, for just an hour, they will be able to hear, that I'm not as any other kid... I have experienced a lot of things, that no one on my age has. E.g. last week, i had this operation. I dont what it is called in english, but my "mandler" (the things in our necks that the doctors recommend that we have removed if we got the PFAPA) was removed. But then I started to bleed out of my mouth one night. I drived to the hospital, because there was a lot of blood. I lost 3 litres of blood. I could have died... Anyway.... I have to get to a class, so I will say goodbey now... I hope someone will write me back! :-)
-by the way... I'm not that good at english, so promise you will not laugh... -and I hope you could understand what I have written...

--IGotPFAPA--

PatriciaB

03-31-2005, 07:38 AM

Missyreg, FMF is genetic in that the gene mutation that causes FMF has been around since biblical times! I got that little piece of info from his doctors at NIH. Supposedly it mainly affects people of Mediterranean descent but neither his father nor I fit that description so we don't know how he got. No family members on either side of the family have it either.

PJ does have alot of joint pain whether or not he's having an episode. He gets the mouth sores but very, very minimally. I've heard of kids who get them pretty bad.

rdaugherty73

04-13-2005, 11:49 AM

My daugherty just turned 5 and I feel like singing because I have found this disease. I see that some of you have had a really hard time of it, and I feel like a terrible parent because i haven't done any research in the 5 years we have been dealing with this. My daughter Naomi has had what we called her "random fever virus" for as long as I can remember. About once a month, I have just started to track it, she gets a really high fever, between 103-105. The highest was 105.6 about a two years ago. The doctors have always told me that she had a virus. The generally tested for strep because her throat has always been red. Just during the last year the Dr. noticed that she had sores in the back of her throat, and with this last fever I noticed she had one or two sores in her mouth. I don't even take her to the Dr. anymore when she gets the fever because they tell me the same thing, its a virus. She is knocked out for about 3-4 days just with the fever. If I give motrin and tylenol she is fine. I have always thought it odd, but didn't really start focusing on it as a problem until the last year. What kind of Dr. do I need to see. Do you think I can talk my pediatrician into trying the prednisone just based on this. Certainly it couldn't hurt to give her one or two doses. My son is asthmatic and has a lot more orapred than that... What are the recommended next steps? Is there any lab work that can help diagnose this?

ewald

04-16-2005, 12:09 AM

hello to everyone who has a child with periodic fever syndrome.My daughter contracted bacterial meningitis when she was six months old.Fortunately we caught it in time and she didnt seem to have any problems.UNTIL the dreaded fevers started.every month Bella got a fever of 41.We literally had hundreds of tests without any sucess. When Bella was 12 months old her fever went to 42 for seven days and she had massive lymph nodes in her neck. She was susequently diagnosed with Kawasaki disease(no one was really sure what she had).She was given gamma globulin
and the fever immediately subsided.It was at this time that our doctor suggested we see an immunologist as they thought Bella might have some sort of immune problem. It was as if a weight had been lifted from my shoulders!. We started Bella on prednisolone and it soon got rid of the fevers. But then she started having episodes every 10 days.It was suggested that we try her on Singulair as this drug has had some sucess with children with Hyper igd syndrome. This didnt work for Bella. So we started her on cimetidine, gradually her fevers went to 4-5 weeks apart.I cant tell you the releif of this.(Im sure I was close to a breakdown at this stage).Eight weeks ago Bellas lymph nodes had grown so huge in her neck that it was decided to remove one so that they could do a biopsy on it to make sure she didnt have some type of cancer and if she didnt they could run some other tests. When they went to take out a lymph node there were so many that they had to take out a cluster of them.The biopsy came back negative(yippee)unfortunately there was some nerve damage and bella has a drooping lip.We hope this will correct itself in time. I just thought I would share our story as I dont know anyone else who has even heard of pfapa.It was fantastic to read other peoples stories on this site.By the way has anyone ever heard why these fevers start? or how long they go for?. I have been told on a few occasions that they put children into this group when they really dont know whats wrong with them.

ewald

04-16-2005, 12:12 AM

ewald

04-16-2005, 03:00 AM

ringwright

04-19-2005, 07:17 PM

My son is 3 years old and has been diagnosed with PFAPA. I would like to talk with anyone who is familiar with this syndrome.
Hi, I have a 9 year old son that has a similar illness. He has had high fevers off and on for the last 3 years, after he had Kawaski's Disease. The doctor's diagnosed him 3 years ago with Marshall's Syndrome with periodic fever, but they are thinking twice now if that's really what he has. Some of his fevers reach over 106. They just come out of the blue. He would get them at least once a month and the longer he would go without it, the worst the fever would be. His rhematologist started him on Cimitedine 4 months ago, not for ulcers, but for his fevers. And it has really worked. Only 2 fevers in the last 4 months. His fevers may only last a few hours to a few days. He has a low IGg level but everything else is okay. He never was sick until he had the Kawaski's at the age of 6 1/2. Then ever since then, he has these unusual fevers. He just got out of the hospital for a fever 106.7. He went unconscience. He has slowing of his left side of his brain but the doctors can't find out what he has. He was sent to the NIH in Maryland and they think that he has TRAPS, but it came back negative for that. So, I am also looking for somebody who can give me info. But that's what I know about periodic fevers. Good luck and keep your chin up high. I know how you feel.

ringwright

04-19-2005, 07:24 PM

Hello again everyone!
Your question on cimetidine, I found that it helped bella as her fevers went from being every 10 days to 4-5 weeks apart. As for the prednisolone it helps to get rid of the fever but you must be very careful that your child has the fever and not a bacterial or viral infection as it will mask the symptoms ie getting rid of the fever when your child could be needing antibiotics instead.I am getting better at determining what Bella has but it can be difficult at times. I found that with the prednisolone it actually made Bellas fevers come more frequently(i have also read that this can happen). We are thinking of maybe getting Bellas tonsils out even though she has never suffered with these. Has anybody else had any luck with this?.Iwould love to hear from anybody who has any new information on pfapa.

Regards :bouncing: :angel: :angel: :angel: :angel: :angel: :angel: :angel:
My son had his tonsils and adnoids out at the age of 4 for sleep apnea before the fevers even started. They say that having them removed could help with the fevers, but not in our case. He was 6 1/2 before he started with the fevers and now he will be 10 in July. At this point I am very happy with the cimitedine. I couldn't stand to watch him month after month with these high fevers. He has known fevers for almost 4 years now. They have just about taken up his life. When asked by Santa what he wanted for Christmas, his respond was, "I don't want to be sick anymore." It rips at your gut as a mother to have a child with an illness that nobody seems to be able to know what it is. So, for now he will stay on the cimitedine until I have any other solutions.

ringwright

04-19-2005, 08:24 PM

Hi! My son also has Periodic Fever syndrome. We have been dealing with this problem for 6 years. He is 8 now. We have had many lab test and 3 lymph node biopsies. We are using Prednisone during attacks and it seems to be working pretty well. At least it helps with his appetite and also keeps the fever from going so high. I have always wondered it there were others out there with the same problem. It is a difficult thing for the child the parents. My son is almost 10 years old. He has had these fevers for over 3 years now. His doctor put him on Cimitedine 4 months ago and he has only had 2 fevers since then. The doctors don't know exactly what he has but they think that it related to the fever syndrome. His fevers could get up to 106 and last from a few hours to a couple of days. The longer he goes without a fever the worst it usually is. It seems like too much excitement can set a fever off. His IGg level is low. The doctor's just say that one day he may outgrow this but I don't know how much more my son and our family can take of this. He is a active child in between fevers. I also heard that this fever syndrome usually happens with children 5 and younger. Mine is amost 10.

ringwright

04-21-2005, 12:16 PM

I would love to talk with you some more. Please reply. I just read a message from another family who has a daughter with PFAPA. Her doctors recommend that she give her daughter Cimetidine. I do not know what this is. What is your take on it?

Does Prednisone work well for your son? Have you had to increase the dosage as he has gotten older?

Has school and this sydrome been a problem for him?

My son is speeched-delayed and I think having this syndrome has really made him work extra hard to learn and keep up with kids his age.

I look forward to your response.

[This message has been edited by moderator1 (edited 01-01-2002).]
I'm not sure if you got my reply before or not. My son almost 10 years old and has had this syndrome since he was 6 1/2. He has low IGg's, which apparently is what's making the fevers come all of the time. My son started on Cimetidine 4 months ago for the fevers and it has helped tremendiously. He has only had 2 fevers since then. My son has lived with this fever syndrome for almost 4 years, and it has taken up his life. He doesn't understand why he isisn't like other children his age. Do you know if your your child's IGg level is low? I was told my son anything from Marshall's Syndrome with periodic fever to PFAPA.

mozartsmemory

04-26-2005, 12:17 AM

Hi, I have a 2 year old son and I'm starting to suspect that he may have fever syndrome. However, in stead of a fever coming every few weeks, he'll get one that'll last about a week, then go away for a week and then come back. It rarely gets any higher than 101, and sometimes comes and goes by the hour. His throat is always red when he gets examined and he's been put on many rounds of amoxcillian. They've done blood work that showed a low white blood cell count, so they tell me he has a virus, write a script for the antibiotic and then send us home. Does it sound like he could have fever syndrome? Any help would be appreciated. Thanks ~Rebecca

sparkles916

05-02-2005, 09:38 PM

My son was diagnosed with PFAPA in January. He just turned 4. I saw two separate infectious disease specialists from world-class children's hospitals. Both agreed on the diagnosis. My son was blood tested every three days until his next fever cycle began (for about 2 weeks). He had the classic symptoms: onset at age 3, every three weeks, lasting three days. He was tested for strep repeatedly with a negative result. He complains of leg pains. He is cranky and lethargic. The first specialist prescribed prednisone. I have only given my son one dose, as I am afraid of the risks associated with giving my son a steroid at such a young age, so many tiimes a year. The second specialist told me that, until my son starts getting the mouth sores which would cause him to stop drinking and become dehydrated, I could control the fevers with tylenol, etc. Trouble is, the fevers are so initense I have had to up the dose on the meds to reduce the fever, which I know is not good for him. I have heard about Tagamet...tonsillectomies...but need more info. Any suggestions? My son will be starting school in Sept. How can I send him? How can he play sports? Help!

ringwright

05-06-2005, 08:01 PM

My son is almost 10 years old and also has this periodic fever. He has had this for over 3 1/2 years now. He started on Cimetidine in Janruary and has been doing great with it. His fevers are more spaced out. He typically would get fevers ranging from 104-106+. He has only had 3 fevers since January. He wouldget fevers every month to a couple times a month.

Lacey F

05-18-2005, 03:11 PM

I am so glad to finally read about people and mothers who are going threw what we have been going threw. I am from a very small town in VA and no one knows what to do with my daughter. She is 3 and we have been having fever since she was 7 months old. For a long time nobody knew what was wrong but finally they gave her a diagnosis of Pafappa. We still are having a lot of high fever. She is not currently on any medications and I am worried about what these fevers are doing to her and I can't seem to get any information. If any one can help I would love to hear anyone's thoughts. I am tired of seeing my little girl sick.

Lacey F

05-18-2005, 03:16 PM

My daughter was on tagament and it did help but did not make the fevers go away. I have the same problem with the steroids. I am scared to give them but I guess I question what are the fevers doing to her. I have the same fear about school. How can I send her. They won't keep her in. I am even scared to have another child.

brookiebear21

05-19-2005, 07:52 AM

Lacey F, I can completely relate to what you are going through. I also have a 3 year old and he has had these fevers since he was 3 months. His last episode of high fever and horrible rash with joint swelling lasted a month. His longest and worst yet. I also wonder and worry about what the fevers are doing to him. and I also don't think I can send him to school with the fevers and rashes, especially when my babysitter calls me 4-5 times a day and she is a lifelong family friend.
All I can tell you is to really stay on this. Take your daughter to the doc or emerg every single time she has an episode, demand that they do further testing, and get copies of all of her bloodwork and tests they have already done. Sit down with it all and look for levels in her blood that are always high or low. I did this and it has helped tremendously. I researched all of the tests and allowed me to question these doctors about why his ESR and LDH levels are always high. Because chances are, until you point them out, nobody is sitting down with her file comparing values.
I do know how frustrating and helpless you feel. I personally connot believe how hard I have had to fight to get my son looked at. The last time I took him to emerg he had a high fever, a horrible rash and his face, hands, feet and knees were swelling up. The doc (from my very small town), had never heard of periodic fever syndromes and had never seen the type of rash that my son had before. The only good thing that came from my visit was the doctor's written note of the visit stating exactly what they found. This helps tremendously when seeing a specialist.
Do you have a rheum doc now? I would suggest you get one, he has helped me tremendously. my son is now on two different med's which have seemed to have helped him. Or maybe it is wishful thinking considering his last episode ending only two days ago was a month long.
Good luck, I hoped that helped!

Lacey F

05-19-2005, 05:16 PM

Brookiebear I am so glad that someone responded. I have currently recieved all of my daughters records and am making sure that everytime something is done that we get copies of everything. The positive is that my pediatritian is very open minded and has refered us everywhere trying to get us the help we need. We were seeing an infectious disease specialist which is who diagnosed my daughter. She is the one who helped us. She is currently doing work overseas which leaves us stranded. We are trying to contact someone at UVA Hospital and are awaiting a call back. It is just so frustrating. It is reassurring that some others are and have gone threw what we are. Do you have any other children? Have doctors talked to you about the chances of this happening to another child. What medications is your child on?

brookiebear21

05-19-2005, 10:02 PM

Hello again. Yes, I have also felt very frustrated and at times at a loss as to what to do to help my son. We are over 2 hours away from my son's rheum. doc but it is impossible to even talk to anybody. I have been trying for 2 weeks to get the consulation notes from his last visit. Just so that I can take it with me to my local doctor and he will have some clue as to what is going on. Copies of everything go to my pediatrician, however he is also over 1 hour away and we only get to see him when he visits my small town which is monthly. It is frustrating, as a parent you feel like you need to do something to help your child and yet there is nowhere to turn. I know the copies of his reports have helped me to feel like I am doing something. The doctors office gets so upset with me when I call asking for copies of his bloodwork.
My son is on two different types of medication, Colchicine and Naprosyn. They have both seemed to help him, but like I said it may be wishful thinking on my part. I want so badly for him to just feel better, and I get so upset because I know that he is getting basically robbed of his childhood. I have three other girls, they are all older than him and have never really had any medical problems. My oldest is 12, 9 and 5. Do you have any other children? And did you ever have the gut instinct that something just isn't 'right' with your child? It is scary because it is only now that he is starting to vocalize what is hurting and that is still limited, it is so hard to know what hurts and how badly they feel.
I look forward to hearing back from you, this is the first time I have met someone with a child the same age as mine and similar symtoms. Does your daughter ever get rashes and does she have abnormal lymph nodes at all? And in her bloodwork is there anything out of the normal range?
Look forward to your reply!

Lacey F

05-20-2005, 09:52 AM

Brookiebear,

Currently Lacey, my daughter, is our only child. I currently don't have any other children. We have recently been talking about having another, but to be honest I am terrified. I don't know that I can handle with what I already have on my plate. I work a full time job as well as my husband. There have been days she has to go the the babysitter sick or that I have to bring her to work with me. This was definately not something I planned for. But then I feel very selfish seeing all of these other kids with cancer and other diseases that are much worse than my daughter, but bottom line is that she is mine and I hate to see her sick all the time. Lacey's blood work typically is normal. Our only problem is her white blood cell count and her immune system. We struggle constantly with how to keep her well outside of the episodes. She wants to go to preschool so bad but I am scared to send her. I used to feel very unsettled about Lacey's fevers. Now I guess I am so used to the fevers that it's just another day. Lacey doesn't get rashes. She usually vomits with her fevers. We have had many hospital stays because she gets dehidrated. I spoke with our pediatrition last night. Sometimes I feel like he thinks that we are crazy or bugging him to death but I guess that is what you have to do to get results.

brookiebear21

05-21-2005, 04:10 PM

Yes, I also feel like my doctor gets frustrated with me, and I wonder if his nurse does as well. But bottom line, these are our kids and in the end it doesn't matter if they get annoyed, we have to keep pushing. My pediatrician once told me that I have to get angry with the various specialists that he would send me to, that I had to stand up for my son and demand that something be done, in his words he said 'you have to stop being nice'. And I guess on my son's last hospitalization I did stop being so nice. But still didn't get the results I needed. It's odd when you are in the hospital with a 2 year old and they just make you sit there, day after day, with no real tests or investigations going on. You go from fighting to have your kid admitted to fighting to leave. IT is hard to see them in hospital but when they aren't doing anything that is harder. I constantly wonder and worry that they have missed a diagnosis. We dont have any real proof that this is a Periodic fever syndrome, more specifically FMF, and with each episode my son seems to get worse. The swelling of his joints now is very obvious and painful for him.
I can relate to you being worried about having other children. Genetically I don' know what the odds are, you should get some genetic counselling for that. I have 3 perfectly healthy other children and my son is the first for any illness of this type. My husband and I both work full time, which does make it very difficult. My other children are old enough now that they help out, but they still have tons of extracurricular activities that they want to participate in. But it is still so hard to see your child be sick so much. I am just tired of him always being sick, and at this point I am getting fed up with it. I want them to take further actions. Which I know would include a biopsy and a bone marrow, which I have been really struggling with. Do you put your child through that pain? But honestly, I need to know if there is any lurking disease that we don't know about, the doctors have always stressed the possibility of lymphoma, and to not know and wonder always sits in the back of my mind. We did contact the National Insititute of Health to have my son included in a clinical trial, so we are hoping that this will all help.
However, I am also scared to find out what is really wrong with him. For his sake we all need to find out. How has this impacted your relationship with your husband?
It has been really hard and stressful on our whole family unit.

Lacey F

05-23-2005, 11:18 AM

Brookiebear,

I want to thank you for responding so much. I don't have internet at home so I feel like I run into work to see if anyone has responded. It has become a source of sanity. My Husband and I struggle with Lacey being sick a lot. We handle things so different and sometimes that is good and then other times it's very tough. I think her being sick has brought us closer together as a couple, but on the other hand it's very stressful. I am always scared to leave her which means not a lot of private time. We are financially strapped, we have not been without medical bills in three years. I am typically the rock, keeping it together for everyone until I snapp. Luckly I have a huge support system. I am very close to my family and they live in town with me and I have a very stong church family and faith which I know has brought me this far. I have been very fortunate to work with wonderful doctors. Lacey has been tested for everything under the sun. Has your son been tested for Juvenile arthritus? They tested Lacey because they said the symptoms were similar. We are getting ready to go to a new hospital. I know that means that she is going to be put through all the same tests all over again. Thank goodness she is so good about it. I think she is so used to it all it doesn't phase her. We use numbing cream before shots and blood draws so that she doesn't feel anything. We try our best not to spoil her or let others because it is important to us sick or not sick that she be a well mannored well behaved kid. (I am a social worker so I work with a lot of really bad kids) We try to keep her involved in activities like other kids, gymnastics, swimming and getting ready to start t-ball. but it does wear her out. She does miss some but she loves being with other kids so much I am not going to punish her because she is sick. As she has gotten older it has helped because she can tell me what is wrong where before it was a guessing game.

My best friend asks me all the time how we do it. I tell that to be honest we have never known any different she has almost always been sick. This past week I went through a very angry stage but I always seem to get over it. I keep telling myself that it doesn't help the situation being mad. Well hope to hear from you soon.

brookiebear21

05-24-2005, 08:21 AM

Lacey F,
Wow I can relate to you and how you are feeling. I also go through angry stages, I just don't want to talk or be around anyone, and yes I also get over it. Everyone seems to understand and don't take it personally but realize it is everything that is going on. We are lucky that we don't have medical bills, I couldn't even imagine that stress on top of everything else. I live in Canada so everything is covered by our health care system.
My husband and I also handle things very differently. His way is to pretend there is no problem and if he doesn't acknowledge it maybe it will go away. Causes a lot of conflict.
Are there times in between Lacey's episodes that you wonder and hope another one doesn't come? Or that you doubt yourself and convince yourself it wasn't as bad as you thought?
Jordan has also been tested for everything under the sun, I was told there wasnt' a JRA 'test', they just didn't think he had it. I think because at that time he did not have any joint swelling or signs of effusion. however since that he has had both. The one thing they have never really ruled out is lymphoma, which honestly is really scaring me.
They began the genetic testing for FMF but I haven't heard anything yet. I am just beside myself as to what to do next. I think I need to demand that they rule out lymphoma, otherwise it is always going to be in the back of my mind. I need to know 100% what is wrong with my son, I hate the 'diagnosis of the week', as my husband calls them.
And also like you people are always asking me how we do it. And like you I believe my son has always lived with this, He doesn't know any different. That is why when he is actually feeling good he will sit there and just smile, he is so happy!!!
Anyways, thanks I do thank you for all of your reponses, it does really help to talk to someone going through the same thing!

Lacey F

05-24-2005, 02:03 PM

Brookiebear,

Be thankful for the medical expense part. We paid over 10,000 dollars last year not counting what insurance covered and what we have to pay for insurance. I think the first two years I spent hopeful that she would not have anymore episodes. Now I just get angry at other people who are hopeful. I feel that the reality of the situation is that she is going to be sick. We just have to figure out a way to get through each situation. I live from fever to fever. It has started to consume my life a little bit. I can't image your situation having three other kids. I admire you. Some days I don't know that I could handle more. I will go back and look at Lacey's records. I can't remember if they tested her for the juvenile aurthritus or if the specialist ruled it out but I will look and let you know. If there is a test maybe that would be helpful for your son. Does your son have episodes worse after he has been tired or is very active or been on a trip. I am noticing that Lacey has episodes closer together if she is overly active. We went camping for a weekend and she went non stop the whole weekend. Before we even made it back on Sunday she was sick. I am trying to pay more attention to those types of things. It's great hearing from you.

brookiebear21

05-25-2005, 08:05 AM

My gosh that is a lot of money for medical expenses! I know we are very lucky here in Canada that everything is covered. The downside from that is very long wait lists to see doctors and tests not being done as a way to save money. And when it comes to your children you don't want to wait 6 months to see a specialist that may help him. I know my pediatrician put my son in hospital at sick kids in toronto just so he could see the rheumatologist. Otherwise we would be wait listed and wouldn't get in for over a year for an inital consultation.

When you said that you live 'fever to fever', that is exactly how I feel. I live in a fear of when it might come back and how bad it will be. I honestly am not sure if he is worse if he is tired or after doing something stressful. We took a family trip to florida in april and he was great for the 10 days we were gone, and his fever began the week after we returned home. And honestly, I am not sure if he has truly gotten over the episode. He still isn't himself. He still seems quite disinterested in most activities and continues to fall asleep while eating dinner, but his fever is down. He always has a low grade temp, typically 38.0-38.5 and that is where he is back to today. And yes, like yourself it has consumed my life a little bit. I am lucky that I have older children, my oldest being 12, helps out a lot. Most of the time I chose to have my son stay home with me instead of taking him to my other children's activities. I know that isn't fair but most of the time I am more afraid that it will either set off a fever episode or that he will get worse. Probably irrational.

I just received a letter from Jordan's rheumatologist that sent me into a tailspin. And I have to tell you that after I get my son's bloodword back or reports from doctors, I disect them. I look up every single word I don't understand and try to make sense of it. The report talked about Jordan's heart having 'wide splitting', and effusions in his hands, wrist, ankles and knees, and how his anemia is likely due to a 'hemoglobinopathy' rather than iron deficiency. I realized last night that my son seems to be getting worse. Every report I get from a doctor gets worse. And it scares me. Reading the report I picture a very sick little boy. And yet how long will he go getting worse? That is what consumes me. I can't stop thinking that they are missing something. Or maybe it is because we have had so many different diagnosis, that a periodic fever syndrome diagnosis seems like it might be just another diagnosis that like all the others may turn out to be not true. Do you have these anxieties?

Lacey F

05-25-2005, 10:10 AM

I feel more anxiety as to what the high fevers are doing to her brain. My specialist gave me some great advice not to long ago. She said to try my hardest not to read into everything. She said a lot of time that information is put into medical reports for a doctors benefit. she also told me that the internet will make you crazy. She said that there is a lot of good information but you can also make yourself crazy reading all of it because most of the time they are giving a worst case scenario. I think I am at the point with my daughter that I am done trying to fix her. I did that for about two years. I just want something to help bring the fevers down to normal. I don't know if that is a good way to look at things but I guess it's like having a child with down syndrome, it doesn't go away. I think that I am that way because everytime I think it is going away it comes back and I am so disappointed.

Does your son sleep well? Our daughter goes through phase where she doesn't sleep for days. We have been up for two nights with her. It is so exhausting. I try and not let it wear me down but after so many nights you get cranky. My husband and I were screaming at each other at 2:00 am to then turn around and apologize because we both knew it was out of frustration and that we were tired. She as well seems to run a constant fever. But as long as it stays below 102.00 she acts like she does not have a fever. I worry about school all the time. She talks about wanting to go and I don't know how she is going to survive. The other problem we have is her immune system is so week inbetween episodes we get every virus and cold. I feel like she is never well. She has an iron defficany and is IGA deficiant but that have related this to her chronic illness. For a lond time they thought she had Lukemia.

I totally understand how you feel about not having a clear diagnosis. We have been there and done that. I feel good about our diagnosis now I just don't feel good that there is nothing they can do to help subside some of the fevers. We did have her tonsils taken out at 18 months which helped a lot. We went from being sick every other week to a couple weeks in between. Our specialist had read an article that stated 70% of children with PFAPA once their tonsils are removed the fevers decrease. It has helped. It took us forever to get a ear,nose and throat doctor to understand why when nothing was wrong with her tonsils that they needed to come out. That was a battle. We do not have any problem seeing doctors. Most doctors, in my opinion want to study her because her condition is so rare. We are also aobut two hours from Duke University and University of Virginia which both have awesume children's hopsitals. I have been talking with some of the doctors about steriod use. We can't decide what we want to do.

brookiebear21

05-26-2005, 07:51 AM

I have heard that steriod use even in small doses does help tremenously. I have filled my prescription for prednisone but have not used it. My son used take it in small doses when he was only 6 months old because of his coughing and asthma, and the stuff made him so jittery it was horrible. But I have heard some really good things about it, and that it is not harmful in small doses.
Has Lacey ever had a seizure with the fevers? My son is famous for them. It scares the life out of me and is horrible, that only happens when he gets above 105 but still frightening. And like lacey, my son doesn't act like anything is wrong unless he is burning up. It really is quite amazing, and that is something the doctors have always commented on. "oh he can't be that sick, look at him, he is a happy child, the low grade fever just must be his normal core temp'. We did prove this to be wrong and I knew at the time it was wrong, but that is what the doctors thought at one time because my son acted completely fine even though he was 101 or at times even 102. My theory was always that he acted fine because he knows no different.

I can completely relate to the non-sleeping frustration issue. Jordan goes through times he will not sleep, it will go on for a week or so and it's like he just can't get comfortable and that he is in some sort of pain in his stomach. He tends to curl up in a fetal position. And he will just cry this shrill high pitched scream and I can't settle him down. I know he is in pain somewhere and he has done this since he was about 6 months old, but I am still not sure what is causing the pain. Yes working 10 hour days, having four kids and getting minimal amounts of sleep is exhausting. But you just deal with it and keep on going.

I am also worried about school. He doesn't go until next Sept. and I worry that he won't be able to do it. My other children are constantly bringing viruses home that only seem to really affect my son. The common cold for them that is gone in 2 days, lasts in jordan for at least 3 weeks. Plus my babysitter calls me 4-5 times a day to tell me about jordan's fever or other concerns, he would never last at school. They don't let kids stay at school with a fever, jordan would be absent more often than be there.

It is all so stressful. If I could come to terms with it and accept his diagnosis I would probably feel much better with it all. Maybe I am just getting obsessed and need to just relax? Has lacey ever had a high ESR and CRP?
Anyways, thx again, this has really helped me!!!

Lacey F

05-26-2005, 10:45 AM

Lacey has never had any sezuires with her fevers. I always panic about that. Her bodies response is to throw up to the point of dehidration which then puts us in the hospital. She tries so hard to keep medication down and it doesn't work. Most of the time if I can get medication in her before it gets real high I can avoid the vomiting. As of right now they tell me to give her tylenol, no motrin. I did not realize that excessive use of motrin with children who have high fevers can cause swelling in the liver and splean. I was shoveling it in till my specialist told us to stop. I am convinced that her body laughs at the Tylenol. It has no effect on her fever at all.

I as well can relate to the doctors not believing you. We would be rushing Lacey to the ER with a temp of 105 and by the time we got seen she would be down to 100. They would look at me like I was some new young mom that was panicing for no reason until she hit one of her fevers in the ER. I then finally had proof.

I am not sure that I know what ESR and CRP are. If you have more info I can probably answer your question better.

It is very odd that I feel emotionally we are at the same place. I think for the past month I have cried everyday. I keep telling myself to just except this illness it's just the way she is but it is so hard. I have considered some counseling. (I refer half the people I work with I guess I need to practice what I preach) My work offers some free services. I don't know if it will help but my husband is about ready to kill me. I have become very bitter and of coarse snappy with him. I love my husband very much and we are trying to be supportive of each other but I am truly not doing my part right now. I usually am a happy go lucky person or at least I used to be. Now I feel like I am in knots all the time. I have a stressfull job to go home and feel even more stress. My husband is able to get away and have some release, golf, softball, basketball. I don't do that. Wherever I am Lacey is with me. I have got to seperate myself. My parents keep telling me I am going to have a breakdown.

My parents want to take her for a week this summer to my Grandmothers which is two hours away. I am paniced. My Husband said that they know what to do and it is only an hour from her doctor. He thinks it will be good for us. I agree if I can relax with her gone. Am I crazy or just obsessed?

brookiebear21

05-27-2005, 07:51 AM

I don't believe you are either crazy or obsessed. I think it is a normal reaction. You have lived through 3 years of your daughter being ill more often than healthy. You want to protect her and do what you can to be there for her. I can relate to your feelings completely. I am very apprehensive and protective with my son and where he goes and who is with him. I always need to be there. You would probably be amazed how good she does with her grandmother and maybe if you allow her to go it will be a good first step for you. I feel the same way though, we went to florida for 2 weeks in april and I was so unsure of taking him. I worried myself sick. Turned out he was great while we were there. Hasn't been good since but the trip was wonderful. You could use the break and let yourself have time to relax and enjoy some time for yourself.

The ESR and CRP that I am referring to are levels in bloodwork, it indicated levels of inflammation. The doctors always check Jordan's levels in every bloodwork that the has done. Jordan's are usually very high with times of fevers. I would be very surprised if they have not checked Lacey's levels, it is very important that they do.

And I can really relate to your story about the ER. Jordan's pediatrician actually put Jordan in hospital for a week during a time of fever so they could chart his fever and have documented proof that his fevers were genuine. I find it pretty sad that they have to go to those measures before doctors believe that it is going on. IT is like they believe all mothers to be neurotic about their children and their symptoms. It is like I always tell the doctors, I have 3 other children, I am not overeacting, I know what children are supposed to act like and the normal childhood illnesses, my son does not have a 'normal childhood illness', now find out what is wrong and fix him.' I am not sure if they will ever be able to fix him, like I said before I just hope they figure out what is wrong 100% so that they can start treating him. Jordan has had this awful cough for the past 2 months, his fevers come and go and haven't stayed high over the past week. Today he woke up and his face was swollen again, especially his eyes, they are all red and swollen. I don't know if a new session of fevers is coming or what is wrong with him. It is a guessing game and I can't shake the feeling that they are missing something? Now I feel like I am going crazy or obsessed!

Lacey F

05-27-2005, 12:53 PM

I will have to look at Lacey's blood levels to see it they are testing her for the ESR and CRP. DO they test Jordan's Immune System. The do Lacey's about every three months. It is always terrible. They said it should be above 17 it has never even been close.

We are still not sleeping. I am so sorry that Jordan is still not feeling well. We don't have a whole lot of the physical appearance of illness like the swellling and rash that Jordan has. Just know that even through these messages I can tell Jordan is very lucky. It's amazing just reading your messages I can tell that you are an awesome mom. You have given me (a new mom) a lot of comfort and encouragement to keep pushing to help my daughter feel better and to not feel like I'm nuts. Do the doctors examine him when he is in episode? Have they given him a diagnosis of anything or just tell you that they are unsure. That would be very frustrating. Everytime Lacey has an episode we do bloodwork and doctors visits. This is becoming about every two weeks again. Have they ever mentioned a tonsilectamy? That helped control Lacey's fevers some. I wonder if that would help Jordan.

I just want to thank you for responding again. I was really starting to lose it and these messages have really brought me back and help me feel sane again. It has been very theraputic. I know they say they are for info. about our kids but I think for me it's been more about me dealing with her illness than dealing with her with her illness if that makes any sense.

Hope Jordan has a good weekend and feeling better.

Calei

05-27-2005, 07:43 PM

My son is now 11 and was diagnosed with PFAPA 2 years ago after years of tests. The nearest Children's Hospital is a 4 hour drive one way, a trip we made every 3 months. Once diagnosed, through their rheumatology department,(with the help of an interdicsiplinary commitee called the Fever Board) we were offered the options of prednisone, cimetidine or a tonsillectomy. We ended up going with the surgery option after much agonizing. It has ended up being a wonderful thing. The poor boy would have an episode every 3-5 weeks, each episode lasting 4 days. Nausea, body aches so bad he could hardly walk, low grade fever,extreme fatigue, swollen glands and mouth sores, as well as developing a rash occasionally. He had an elevated sedimentation rate and very odd Ig level readings. He is still being monitored by our closest children's hospital but his PFAPA symptoms have pretty much disappeared. His surgery was in August of 2004 and it is now May 2005. It seems as though he "tries" to have an episode but it then "aborts". So he may have a day or to of not feeling well but not nearly as severe as before and it has only happened a few times since the surgery. Given the side effects of prednisone therapy we felt that tonsillectomy carried fewer long term risks. We are so glad that we tried it! The ENT surgeon did say they aren't sure why it works, nor did they seem sure it would work for everyone but it has dramatically improved the quality of life for my son and our entire family as a result.

Lacey F

06-01-2005, 12:22 PM

Brookiebear,

I am definaletly going to try and find the support group. I am not extremely internet savy so it may take me a while (hahaha). In my experience the tonselectomy works. Lacey's fevers have not stopped but they are definately better than when we started this process. I think it's hard to except any diagnosis without a solution. Even tough they have diagnosed my daughter I think I am not happy with the answer becasue there is no fix. It is frustrating that with all of the people in the world no one can come up with something.

The immune system can be tested through blood work. We just request that her levels be checked everytime they draw blood. I am sure Jordan's is low because of chronic illness. That is the way Lacey's is. We had a good weekend with no illness. It was a first in a long time.

Thanks again, Let me know how Jordan's appointment went.

ali1107

06-12-2005, 06:31 PM

After 2 years of tests and at least 3 years of suffering, my daughter Rebecca has just been diagnosed with PFAPA. We have opted for Tagamet and are on the waiting list for her tonsils to be removed. I still can't believe that my beautiful daughter has this rare condition! One thing I would be interested to know from others is if their children seem to suffer from fatigue more than 'normal' kids. rebecca has recurrent fever anything from 2-8 weeks, with swollen glands, tummy pain, headache etc and vomits at least once per episode. We were told that there were only around 60 cases reported worldwide. We live in Scotland and have never heard of anyone else in this position

kim carey

06-30-2005, 01:21 AM

hi there-
my daughter is almost 4 years old, and has been suffering from high fevers, vomiting, etc, for her whole life, she would have these high fevers every 3-4 weeks, like clockwork.
finally when she turned around 1 1/2 years old, we took her to children's hospital in denver where they ran blood test, and she had a high fed rate, and creactive protein!
we have been dealing with this for so long, we think we will acually die from exhaustion!
our doctor also recommended the steroids, but we have yet to try it!
the last fever episode was so bad, we almost have to check her into the hospital, because of the severe vomitting, and dehydration that occurs, we finally had to give her a nausea soppository, and then , and only then was she able to keep water down at all!
my daughter is truly a survivor, but we are exhausted as all of you, trying to diagose and care for our own children!
should i look for help with a specialist?
thanks-
kim :)

yolanda978

07-01-2005, 02:08 AM

Hello-
Well by reading the other entries, it sounds like we are at the beginning of a long road! My son is 4 yrs old and has been experiencing these monthly fevers for 4 months now. They get very high and last anywhere from 4-7 days. When the fever is down, he's fine, normal little terror! :) Our Dr. initially expressed concern until he had spoken with the Rheumatologist and mentioned the possibility of PFAPA. The response I am getting is 'lets wait a few more months and just see what happens'. We have done blood work that indicates that there is inflamation somewhere and that his body is working against something, but so far all of our results are non-specific. His white-blood cell count is normal. Our frustration is just that, what if its something more serious and we waited too long. Its does relax me a bit to know that there are other children with the same issues. I decided like many of you that it is up to me to do the research!
thanks for sharing!

b_rouillard95

07-01-2005, 09:19 PM

Hi everyone. This is my first time here. I am desperate for some answers.
My 5 year old daughter just had some blood work return with her IgD elevated.
She began showing symptoms about 2 years ago. She had fevers, night sweats, trunk rash, exhaustion, and if she didn't get enough sleep and long naps during the day she would begin vomiting. We were seen at Children's Hospital in Boston by a rheumatologist. Our pediatrition was convinced it was juvenille rheumatiod arthritis. However the symptoms would go away. And of course JRA doesn't go away if untreated. So we were told to wait and see if maybe this was the beginning of JRA. I was more persistent and I got another visit at Children's and still the Doctor didn't feel it was JRA. She told me she was hyper-mobile and was spraining joints therefore she was having joint swelling. Again I was upset because you don't get fevers and vomit from sprains. So peds. ordered more blood work and the rheumatologist recommended Periodic Fever Syndrome tests. THat is where we stand at this point. I don't know too much about it. SHe has never had the sores in her mouth or the swollen lymph nodes.
If you have any information or good websites that may explain this better please let me know. :confused:
THanks so much. Becky

littlemomma3

07-02-2005, 01:19 AM

This is also my first time using this website. My son, Jace, is 6 1/2yrs old and was just diagnosed with Periodic Fever Syndrome. He has been having unexplained high fevers since he was 3 yrs old. It is so strange to read all of these messages. I feel like everyone is telling the story of my little guy. My doctor was also convinced that it was Juvenile Rheumatoid Arthritis. I am relieved to have a diagnosis, but still concerned. He was just diagnosed and has not had a fever yet. We are suppose to try the steriod when he does get his fever. Can anyone tell me what sort of things he might experience on the steroid? He also had steriods when he was a baby and it made him so jittery it freaked me out! which leads me to another question : Did anyone else give their children steroids when they were babies? I did read one message that said they did and I was curious if there might be some sort of link. I still have so many questions, because I couldn't really ask my doctor any questions. I had my 6 yr, my 3 yr old, and my 3 month old with me at the time and I couldn't concentrate on what he was really saying. so now I feel confused and not very well informed. If someone has more info for me, it would be great. Okay, now only one more question: Does anyone have more than one child with this? Jace is my oldest from a different father and i have 2 more children from my husband and i am concerned for them as well.

littlemomma3

07-02-2005, 01:37 AM

My son had his tonsils and adnoids out at the age of 4 for sleep apnea before the fevers even started. They say that having them removed could help with the fevers, but not in our case. He was 6 1/2 before he started with the fevers and now he will be 10 in July. At this point I am very happy with the cimitedine. I couldn't stand to watch him month after month with these high fevers. He has known fevers for almost 4 years now. They have just about taken up his life. When asked by Santa what he wanted for Christmas, his respond was, "I don't want to be sick anymore." It rips at your gut as a mother to have a child with an illness that nobody seems to be able to know what it is. So, for now he will stay on the cimitedine until I have any other solutions.

Dear ringwright,
My son is 6 1/2 yrs old and was just diagnosed with this. I also can not stand to watch him get fever after fever. It always seems to happen right before a big trip or something fun and he has to miss out. It is really hard to explain to him :confused: sometimes. I am a little curious about how your son is doing in school?My son was a Kindergartner last year and had to miss so much school. This coming year, he will be a first grader and i'm afraid it will affect how he does in school.
What is cimitedine? Is it a steroid or something else? My doctor prescribed a steroid when his fever comes, but he also recommended trying an allergy medicine every day to see if it was an allergy. Have you heard of this or tried this? it would be great to hear from you! thanks

Calei

07-02-2005, 05:18 AM

I believe from all that I have learned about PFAPA there are a lot more than 60 cases reported worldwide. I think, however, getting a diagnosis is a real issue and doctors are only now becoming aware that this syndrome exists. We are on the west coast of Canada and our pediatric ENT surgeon informed us that our son was the 7th child he had performed a tosillectomy on as a treatment for PFAPA. He also said that his older
fellow surgeons there had never done any. Perhaps because our doctors were young they were more "up" on the new illnesses. My point though is, if one surgeon in one childrens hospital has seen 7 children with it, then the worldwide total must be higher.
Hopefully forums like this one will help get the word out as well as offer some support to parents who feel alone in this. I still believe that for my child tonsillectomy was the best treatment. He is still symptom free 11 months after surgery and he is free from having to take medications regularily. Such an improvement in his quality of life!

b_rouillard95

07-04-2005, 01:28 PM

ali1107
You mentioned fatigue. My daughter Alexandria is always exhausted. SHe is 5 1/2 and will start kindergarten in the fall. It seems that if she does too much or doesn't get to bed early she gets over tired and then the fevers begin and the vomiting.
Don't know if being over tired could cause this or if it's just a coincidnance. Does anyone else know?

TracyB

07-05-2005, 02:52 AM

Hi , I'm new here. After reading all of your stories I feel lucky. I think my baby, Emma, could be worse. Em is 2 1/2 and started having fevers before she was 1. The doctors always said it's a virus, etc. but no one else in the family got sick (we have a five yr. old son). We have had numerous blood tests, x-rays, scans, you name it. Everything is always clear. Our doc was also concerned about JRA but she doesn't have any swelling, etc. We saw a pediatric infectious disease specialist in Winston Salem, NC because our pediatrician really doesn't know what else to do and has said as much. I'm at a point where I figure he has a few hundred kids to take care of and I have mine and those are the most important to me. Now I need help. Emma does not have ulcers in her mouth but she does have very swollen lymph nodes in her neck (I don't know how she swallows!). Is this common in other kids? I found some things on hyper IgD and the symptoms of that describe Emma perfectly, but it says it's very rare. Is that true? The study I read was from the Netherlands. Also I'm not really certain the difference in FMF, TRAPS or CINCA?? Anyone who can help would be great. Our doc said he would send her to a specialist for fever syndromes but we don't know where one is. None of the doctors he contacted specialized in it, they just treated it by default because no one else knew what to do. Sound familiar to anyone? I hate that other children out there have this but it's comforting to know there are other moms who have been through it and are still making it. As my friend says, "we'll make it. we just won't look like much when we get there". We are on day 2 of this episode so I don't expect to look like much for another 3-4 days anyway!!

HeatherS

07-07-2005, 11:01 PM

I am just in awe right now. Here I was thinking we were the only ones dealing with this. You have all made me finally feel as though I'm NOT a paranoid Mom. I feel like I could have written so many of these posts!

My son, Evan, started getting high fevers around 8 months of age. We had no idea what was wrong with him, but he would just lay there, whimpering and his fever would spike to 104.8 and stay that way for days. No amount of Motrin, Advil or Tylenol would help him. He never had any other symptoms (well, none that he could communicate to me anyhow...).

Months passed. I don't know why, but I started to realize that Evan was getting sick way more often than he should. I'm a SAHM, so he wasn't exposed to many other kids and my husband and I weren't getting sick, so why was he always getting fevers? I started to keep a journal of the dates he felt feverish and suddenly a pattern started to emerge; he was getting fevers of 102 or higher every 4 to 6 weeks like clockwork. I spoke to Evan's pediatrician and she always said "It's just something kids get" or "he's fighting something off" and left it at that. When he had a 105 fever for over 48 hours, I called the doctor's office and they told me to bring him to the Children's Hospital.

When we spoke to the resident in the ER, I mentioned that my son seemed to get fevers more than the 'normal' amount. He asked me about the fevers and was the first person to actually say that something didn't seem right. During our visit, Evan, who was now about 14 months old, was given an IV, a range of blood tests (including his first sed. rate, white blood cell and CRP) and a urinary cathetar. After his sed rate came back relatively high (I think it was around 60?) but his white cell was normal the doctor called the rheumotology department and made a follow-up appointment for Evan. This was the first time I had ever even heard of recurrent fever syndromes.

We've met with the pediatric rheumotologist a few times. His follow-up blood tests (taken one week after an attack) showed that Evan's CRP went from 90 down to 4. Between attacks, he's a normal, healthy, vibrant little 16 month old boy. Our subsequent visits to the rheumotologist haven't been very enlightening. So far, I've been told that we're going to 'wait and see' if the fevers resolve themselves. We've been given a prescription of Naproxen (naprosin), but it doesn't seem to bring the fever down and really upsets his stomach. The doctors are talking about the possiblity of TRAPS, FHF (Familial Hibernian Fever) and recurrent fever syndrome. We've discussed genetic testing, but I'm not sure what it will help. I've printed out some information about MAPS as well, but it's still all very confusing and a little scary.

I'm angry. I'm tired of my poor baby getting sick every 4 to 6 weeks. The fevers seem to be getting worse; this weekend his attack lasted three days and he started vomiting for the first time. I know there's no 'cure' for any of this, but it would just help to know that he's going to feel better.

So, I have some questions for some of you:

If your child is taking a steriod, what age did they start? Do you find that it's helping?

What other medications seemed to work/didn't work for you?

Have you had genetic testing done for your child's disorder? Why did you do it? Was it helpful for you to know and did it help your treatments?

Any help anyone can provide would be SO appreciated.

moderator2

07-10-2005, 07:20 PM

Do not post your email address or use your real name.

Members may not post anything about other message boards/forums/groups/chats.

ehchemteach

07-11-2005, 07:43 PM

Ever heard of HIDS?

littlemomma3

07-24-2005, 02:06 PM

HeatherS,
my 6 1/2 year old son, Jace, was just diagnosed in June so we are still new to the medications and such. He has had fevers since he was at least 3. He has had one fever since his diagnosis(we think). It is so hard to tell,sometimes, if it is a normal fever or his periodic fever. That is where it gets a little confusing, because you never know if he is really sick or not. I have noticed that Jace will get a fever when he gets overtired or stressed out. we used the steroid medicine (Prednisolone) right away and his fever only lasted that day instead of 5 or 6 days. he really didn't have much side effects from it except I noticed a little bit of a mood change. he was a little crankier and mouthier than usual. (but then again, that could have been him just being a kid)
We have not had genetic testing done, so i also wonder if it would help or not.

Good luck with the future and your little guy. Just remember: you can't make the fevers go away, but you can make your baby feel secure and loved. There is nothing better than having mommy when you are sick!

I will keep you posted on anything new.

Elly

07-28-2005, 10:40 AM

Hi.....my son has this syndrome ,too.He is 4 years old and we live in Germany.I dont know anyone else here,who has this syndrome.My son has it one year,now.We get the diagnosis before 3 weeks.I am think,we make a tonsillectomy this year,cause this means healing in about 80% of the children.(This said our doctor).If not,it is a try.I am 27 years old and live alone with my son.Since one year i dont go to work cause my son has fever attacks every 3-6weeks,with vomitting,his leggs hurts,etc. The fever gets high till 105°.Than,the fever stays for 2-4days.
Please excuse my english,it is not very well,but I hope,you understand me and write back to me.
bye,
Elly

gidgets

08-02-2005, 02:20 PM

This is my first post and I have to say that i feel like a weight has been lifted off of me. My daughter is almost 2 and a half and she has been getting fevers ranging from 101-105 since she was 18 months old. They come every 5 weeks which I tried to pretend wasn't happening. That really scared me. I've had two pediatricians and neither of them had an answer. We did the usual blood tests to test for neutropenia which was negative. We've done numerous urine tests looking for UTI's and even a renal sonogram thinking she may have renal reflux. All were negative. She was at the doctor again this morning with another high fever (105). They had no answer so I came home and started searching the internet and found you all. You all are describing her perfectly. I have a call in to my doctor to get the I-gD tested immediately. My daughter was telling me to kiss her knees and ankles because they were hurting her. I am wondering if that was the aching joints so many of you have mentioned. With her last fever our doctor noticed sores in her mouth and throat and told us she had hand, foot and mouth disease but she never got sores on her hands or feet. I am now wondering it those sores were also part of the HIBS symptoms. I just feel better knowing that this may have a cause afterall and I am not just being an overly anxious Mom about these fevers. I'm not imagining it they are coming every 5 weeks and there has to be a reason and I think I may have found it without any help from my doctors. I'll keep you posted and thanks so much for your stories. They hopefully will find there way to other worried parents.

Gidget and daughter, Daphne.

brookiebear21

08-11-2005, 10:27 PM

I am so glad that finding this board has helped so many families with children suffering from periodic fevers. I am with you all in feeling relieved knowing that others out there have experienced the same things as my family. There is nothing more difficult that dealing with a sick child, a child that always seems to be sick and not knowing why. We as parents wonder if we are overeacting and start to doubt ourselves, when really we don't. We are the advocates for our children and it is sad that we ever have to feel like we have exaggerated our child being ill. Not knowing what is wrong is a horrible feeling, and I used to think that maybe I did not want to know what was wrong with my little boy, as maybe the diagnosis would be too hard to bear. I honestly don't know if I even know 100% what is wrong with my little boy, but I know that I am on this earth to love him for as long as God allows and I have learned an incredible amount from him, and finding all of you wonderful parents out there who are sharing these same experiences have made our journey much easier to bear, so thank you to you all!

HeatherS

08-28-2005, 08:37 PM

LittleMomma3 - Thank you for posting the name of your son's meds. We are going to our 8-weekly appointment with the specialist tomorrow and I've written it down to ask him about it.

ehchemteach - You asked about HIDS... I wasn't sure if you were asking me if I've heard about it or the general public. But, yes, I've heard of it and have printed out a great on-line brochure about it to ask the specialist tomorrow.

I haven't had Evan's IgD levels taken and as I write this, Evan is having an attack (104 right now), so I'm hoping that he'll still have the fever tomorrow so that they can take a urine sample to check his Mevalonic acid levels. There's no way to know right now if he has HIDS, but he certainly has all the symptoms. Unfortunately, his symptoms are starting to get worse: he's starting vomiting and has grabbed his arms or legs numerous times and said "boo-boo". :( I'm hoping that the specialist will authorize the IgD blood tests and the MA tests so that we can rule HIDS out before resorting to Genetic testing.

dalton'smom

08-29-2005, 07:34 PM

We just found out that my 6 year old son has PFAPA, and I must say that this message board has been a God send. I had no idea that so many children suffer from this illness. I go crazy every time I have to explain what is wrong with Dalton. Everyone looks at me with the stangest look of confusion. Dalton has had fevers for about a year and a half now and just 4 months ago he was diagnosed. He has taken Prednisolone, but after the first dose, instead of the fevers coming every 4 week like usual, they doubled. Now he has a fever every 2 weeks, and I find that I am giving him the steroid way more than I wanted to. Has this happened to anyone else? Also, if you don't mind a few questions, has anyone's child had a tonsilectomy with any luck of the fevers going away or at least coming farther apart? I have seen this on a lot of the research I've looked up on the internet. Thanks a lot for any info anyone has.

dalton'smom

ehchemteach

08-30-2005, 12:05 AM

We just finished up an expensive round of genetic testing to rule out Familial Mediterranean Fever, Familial Hibernian fever (TRAPS), Hyper Immunoglobulin-D Syndrome (HIDS or MVK) & Muckle-Wells Syndrome (Familial Cold Uticaria). Happily, all the tests came back negative, so we now know four more things my son does not have!

Anyway, the immunologist asked us if we would consider prophylactic use of colchicine. Can anybody reference any studies or provide first hand experiences about the long-term use of colchicine in young children (age 2-3 years)? We have decided not to pursue this course of treatment until we know more.

Finally, the last 13 fevers (since October of 2004) have been getting shorter in duration and less severe. There is also a clear pattern developing. Matthew may go between a month-and-a-half to two months fever-free and then have three or four two-day episodes about two weeks apart. Then a fever-free period and the cycle begins again. Sound familiar to anyone?

Keep up the good work everyone..your kids appreciate it.

brookiebear21

09-04-2005, 02:28 PM

My son has been on colchicine for approx 8 months now. It has not helped my son's fevers or reduced his episodes but it has not had any side effects that I have noticed or that he has complained about. My son is also on Naprosyn and he does complain after he has it of his stomach being upset but the Colchicine has not had any effect on him and he has two doses a day. My pediatrician stated on the last visit we had that he is going to talk to my son's rheumatologist about taking him off of the Colchicine since it does not seem to be doing any good for him, and that Colchicine has a very high level of toxicity? I am not sure what he meant but that is what he said, hope that is helpful

ehchemteach

09-04-2005, 05:22 PM

Thanks for the information. How old is Jordan? When did he first start getting his fevers?

brookiebear21

09-04-2005, 06:09 PM

brookiebear21

09-04-2005, 06:11 PM

He is 3 years old now, he started having fevers when he was a baby about 3 months old, around 6 months I realized he always seemed to be sick. He has been on several different medicines to help abate the fevers and to avoid further episodes, but they still come. He was diagnosed with a periodic fever about four months ago but I still wonder if we have the right illness, I know something is wrong with him but don't know 100% what it is. Now that he is three he can verbalize more what is going on with him. He gets the odd rashes and cries in pain that he hands, feet and knees hurt. A doctor recently said they thought it was collagen's disease but like I said I don't know what it is. Too many different diagnosis's by too many doctors has made me leary of any 'guesses' as to what is wrong with him, I would like to see concrete medical proof at this point. He has had genetic testing done for FMF but haven't gotten the results yet.

b_rouillard95

09-14-2005, 10:47 PM

Hi Everyone.

Sorry it's been so long since I've posted here. Things have been very crazy. Alexandria hasn't had a fever in about 2 months...she's been exhausted and we've been making sure she get extra sleep. Now that she has begun kindergarten she had her first episode in the 2 months. She had a fever about 101 and swollen glands and no voice. I took her to the doctor's and she didn't have a virus or ear infection so her ped. chalked it up to periodic fever syndrome. We still don't have a diagnosis or anything yet. I really feel like pulling out my hair. I'm so frustrated seeing her so exhausted and now fevers and swollen glands. I keep trying to find answers but am having such a hard time. Thanks for listening to me vent. Talk to you all soon

Becky

mom2rj

09-26-2005, 11:54 PM

I am so relieved to find this board and to see that we are not alone, although it makes me cry to read about what some of you and your children have been through.

Our son Jeremy has been sick frequently since he was two months old. He turned two last week and we had to cancel his birthday party because he had a high fever again. In the past there were often respiratory symptoms with his fevers (especially in the winter), but for the last three months he has had high fevers (up to 106.4 once) every 2-3 weeks with no other symptoms. Our doctor has been very supportive but completely stumped. She finally referred us to a pediatric infectious diseases specialist at the University of Michigan.

Our appointment was today, and the specialist told us she believes Jeremy has PFAPA (she also ordered blood tests three times a week for six weeks to rule out cyclic neutropenia, but she doesn't think he has that).

After reading about some of the testing your kids have been put through, I feel blessed. Jeremy's chart summary of illnesses from our family doctor has 72 entries (and that doesn't include the times we just managed on our own), but he has never been hospitalized, and the only tests he has had are urinalysis and a kidney/appendix ultrasound (all negative). He has never even had blood drawn yet (we start tomorrow). All they are doing at this point is CBC, CRP, and sed rate, but after reading this board I am wondering about whether they should also be testing for some of the genetic diseases. I would appreciate any advice.

I know the diagnosis could be much worse, and the doctor emphasized that this is not life-threatening. But it certainly is quality-of-life-threatening. Jeremy’s illnesses have had a huge impact on our entire family. Our five-year-old was devastated when we cancelled Jeremy’s birthday party last weekend, and it was just the latest of many things he has missed because his brother was sick. It is so frustrating to go to a specialist full of hope for a diagnosis and a cure and instead to hear that they don’t understand it, can’t do anything, and we need to just get used to it. My son is a beautiful, happy, sweet child (he was still saying “please” when he had a 106 fever) and I just can’t believe we are being told that he is doomed to feeling terrible for a third of his life for the foreseeable future.

mom2rj

09-27-2005, 12:03 AM

I just want to share something we have found that really helps Jeremy with the vomiting, since many of you seem to struggle with that. Jeremy often vomits when he has a high fever, and almost always vomits when we give him any kind of medication (including Tylenol). We have been giving him the homeopathic remedy nux vomica, and the results are amazing. We have put the little pellets in his mouth and seen him stop in mid-retch. Now we give him nux vomica any time we give him medicine, and he holds it down. Our family doctor does homeopathy as well as conventional medicine, so she is totally supportive of this, but I realize other doctors might question it. We have not had real consistent success with homeopathy in treating the fevers themselves, but the nux vomica has been incredible for the vomiting.

Has anyone else tried homeopathy for PFAPA? What about any other alternative medical approaches? It doesn't sound like the doctors have any real answers, so I'd be interested in knowing what other options are out there and whether anyone has found anything to be effective.

maum21

09-28-2005, 01:44 AM

This is the first time I have posted a message. I have four children, and my third child, Jaden has Periodic Fever Syndrome. I do not know which one. At age two he went through a battery of tests...spinal tap, bone scan, colonoscopy, upper GI to name a few. A doctor at Scottish Rite in Dallas diagnosed him with the syndrome and did two tests. They both came out negative. I know that one test was for TRAPS and the other, I think was for HID.
Maybe someone out there may know by hearing his symptoms what his might be...or we may have one of those that doesn't have a name yet! There is no rhyme or reason to his fevers. They used to come more frequently a month or so in between and now that he is six he has only had two this whole year! They used to last 6-7 days and now they last 3-4! They are extremely high (104-106). We don't live near Dallas anymore or else I would take him back to Scottish Rite for follow ups. Anyway, about 48 hours into his fevers, he has vomiting. He has in the past had a very stiff neck and his voice sounded swollen but he has never complained of any pain. And when the fevers are lowered by pain reliever, he eats and drinks normally. I don't know...I hate not knowing what it is but I am relieved to know that it isn't life threatening and that he will probably out grow it.
Oh! One time during a fever, I guess he got so hot that the ear wax melted out of his ear! It was literally stuck on his ear, down the side of his face, and on his pillow! I mean have you ever heard of such a thing?!

DAC25

09-30-2005, 03:03 PM

My son is 2 1/2 and for the past 7 months has had chronic fevers, sore throat, major lathargy and temps spiking to 105. Each time it gets a little worse..this last time it spiked and broke and it was followed by a seziure. His glucose levels were extremely low and he had huge sores in his throat, tongue and tonsils. I've reviewed the "treatments"; however, my son also has SEVERE allergies and asthma and already recieves steriods for those things through shots and nebulizers. Of course not all the time but a lot each year. This last time also required a hospital stay at the local childrens hospital. We had a meeting with Infectious diseases but haven't ruled out Pfapa or Hyper IgD syndrome. I just don't know what to do or what is the right answer. Any suggestions? :confused:

aimist

10-03-2005, 11:20 PM

Hi. I have been reading more on this disorder. I am wondering if my son has it. He has had recurrent fevers up to 105 since he was 14 months old. He is 26 months old now. He is having a fever now. They come every 3 to 5 weeks. It has been 4 weeks since his last fever this time. I give up on bloodwork. It always comes back normal. I am always told it is viral...he never has symptoms. How do they know? Then I get told that it is normal for 8 to 12 illnesses a year...but he has had 13 and now they are stuttering when I ask them about it again. The docs don't know. going to a new one doesn't help....they just all tell me the same thing. I think it is sad that I have come to think he has periodic fever syndrome on my own. I honestly think it might be. I have no idea how to proceed. I was wondering...who finally diagnosed your child? Did you go to an immunologist. My ped doesn't think it is necessary. I have no idea who to go to though or if I can go without a referral. I just want answers. This is all also compounded by the fact that my son has had febrile seizures since he was 14 months old too. We have seen a neurologist for this and he says he will out grow them by age 6...but the seizures make him having the fevers even more scary.

aimist

10-03-2005, 11:27 PM

I totally understand how you feel about this being quality of life threatening. It has affected our entire life too. My son is 2 and he hasn't been diagnosed with PFAPA...the docs all don't know what is wrong with him and I am coming to this conclusion thorugh my own research. I am so upset and just want answers. It is even worse for us...because not only is my son having high fevers of 105 every 3 to 5 weeks (sometimes it comes in 2 week intervals...but mainly every 4 weeks) but he also has had febrile seizures for the last year. So if he gets fevers all the time, the chances for seizurs are higher. We saw a neurologist who said he will outgrow the seizures by the time he is 6. I just want the fevers to stop. I guess it would help to start with an immunologist? I honestly am stumped. No one seems to know. He was checked for juvenile rheumatoid arthritis and other autoimmune diseases....his bloodwork always looks perfect. One ped thought it could be cyclic neutropenia...but when he is sick in the ER all the time....his neutrophil levels are never low...so if when he is sick his levels are okay..how can it be neutropenia? I know it really has to be definitely ruled out by the bloodwork that your child is having 3 times a week...but it seems to me that when he is sick it would be low...and he would get far worse illnesses than he does.

It has affected our entire lives. I can barely work now. It is really eating me away. I am just so tired of crying and feeling so chaotic inside over this.

mom2rj

10-04-2005, 03:58 PM

aimist, I understand completely how draining this is. It is almost impossible to function in any other capacity when you have a sick child. Perhaps you could bring some of your research to your doctor and ask for a referral. Our doctor referred us to pediatric infectious diseases at our local university hospital, and that is who made the probable PFAPA diagnosis. After what your son has been through, how could your doctor not give you a referral?

About cyclic neutropenia, the way our specialist explained it is that the neutrophil counts dip before the fever happens. If you only test during the fever, you will not find anything unusual. That is why they test three times a week for six weeks. Apparently the dip can be very short and the count can be back to normal before a fever episode begins. We're one week into this testing, and yes, it's really hard. But EMLA cream to numb the arm or finger and an excellent and friendly technician are really helpful. I'm also hoping we can stop testing after he goes through a fever episode, instead of going through six weeks.

Good for you to find out about PFAPA on your own. It's so hard to know where to look when there are no symptoms other than the fevers. Good luck to you.

sm1231

11-10-2005, 09:22 PM

Hi. My 4 year old was just diagnosed with PFAPA. We were ready to see an Ear Nose Throat specialist to have his tonsils removed, but our doctor recommended seeing an infectious disease doctor first. My son was getting a very high fever (103.5) every 21 days. I could set my schedule by it. It was very weird. Other than the fever, he was just fine. He always developed yellow spots on his tonsils, but never complained of a sore throat. Throat cultures always came back negative for strepp and he always got over it in 3 to 5 days without antobiotics. We are now going to try treating it with Prednisone (a steroid) at the onset of the fever. I'll let you know if that works. It is supposed to.

From what I understand, this is caused by an overreactive immune system. Fevers are a reaction caused by the body to fight infection, only in PFAPA syndrome there is no infection to fight, but the body goes into action anyway. Strange!

tgonyea

11-14-2005, 03:09 PM

I have a 3 1/2 year old who has just been diagnosed with PFAPA. Her episodes are monthly and usually last 7-10 days. Her symptoms include headache, high fever, joint pain, sore throat, swollen lymph node (unilateral), cancer sores and vomiting. We have tried prednizone for the first time. The first dose halted symptoms but they returned 2 days later. We administered a second dose which halted symptoms again however, they returned again two days later (yesterday). I have heard so many success stories with prednizone. Has anyone ever had to administer a third dose? Do your children's symptoms persist after the prednizone? Thanks. Tracie

julzk

11-15-2005, 04:23 PM

I have a 15 year old son that was diagnosed with pfapa when he was 6. He suffered with fevers and all that for over 7 years until the fevers became fewer and farther between and finally ceased. He is extremely healthy and hardly ever gets sick. Well last month he came down with a high fever, 104, and soar throat with pustules. Lasted for about 5 days. Then guess what...here we are a month later and he comes home from school with the exact same symptoms again! I take him to the Doctor. He runs tests for Strep and Mononucleosis...both came back negative. He now is complaining of a lot of abdominal pain. Could this be a return of PFAPA??? Anyone else with this situation? Any info on older patients would be so much appreciated.

Thanks a bunch

Julie

TracyB

11-16-2005, 01:08 AM

Tgonyea, my daughter started prednizone in July. She is 2 1/2 and has had fevers since before 1 yr. old. It made her fevers go from every 4-6 weeks to every 10 days. One dose would stop the fever but not any of the other symptoms. Her doctor said once those started they couldn't be stopped. So, we had swollen glands, mouth ulcers, aching legs, no appetite and big time grouchies. About the time that cleared up it would be time for another fever. Anyway, her next episode we are supposed to give her the pred. on the first day as usual and then give her another dose on the second day to see if that will abort (or at least lesson) the other symptoms. I don't know how it will work but we have our fingers crossed. We are actually overdue for an episode now. Her last episode was really bad and the pred. only worked for one day. Sometimes after a really bad episode we get a longer break before the next one. Anyone else notice that? I don't think ours are as systematic as some of you. We know it's time, but it's not an exact thing. I am learning to tell from some of her actions also and can predict pretty well. Sometimes I think she smells different??

bluemuse

11-29-2005, 07:08 PM

Hi,
I'm new here, my name is Michelle. I was looking online for information relating to recurring fevers. I have a 12 year old son who became sick in February with Pnemonia. He continued to have what looked like illness every month except March. Every month he ran very high fevers over 105. By July I insisted the Dr.'s look at what was wrong, as my kids are never sick in the summer.
They suspected PFAPA and sent him to an infectious disease specialist in Boston. The specialist there was reluctant to give my son a PFAPA diagnosis. (Maybe she didn't have all the info she wanted from the pediatrician)

Currently my son runs very high fever every 19-26 days. He can tell just before the fevers come on that he is getting ill. If I give him Ibuprophen, then 4 hours later tylenol, and keep alternating them this way, it seems to shorten the length of time he stays ill to 1 or 2 days, and keeps him from having complications like nausea and dehydration.

Some of his symptoms are a bit different from typical PFAPA symptoms. He doesn't always get mouth sores (if he does they are quite small). He doesn't get enlarged adnoids either. He does get stomach pain and very bad headaches. Even when we have the fever under control he has massive pressure in his head. This usually last a couple days after the fever has subsided.

Has anyone had these set of symptoms? I am wondering if it could be something besides PFAPA.

This son started having frequent illness just before he turned one year old, then continued with monthly illness until he was 3 and we got his tonsills and adnoids taken out. At that time all the chronic illness seemed to stop...until this last February.

I have read how some people are treating with steroids but another child that sees my pediatrician was treated this way and her fevers began to occur twice as often and they had to stop using it.

I see that some people are recommending the Tagament (or cimetadine). I am also a little nervous about that because my older son had bleeding kidneys for a couple of years. Prior to the bleeding, I had given him tagamet for what seemed to be reflux, and I read that there may be a connection between that drug and some of these bleeding kidney conditions (the bleeding seems to have disappeared thank goodness).

I am concerned that this might be neurological. I know the fevers are not brought on by some contagious bacteria or virus. No one has gotten sick even after drinking from his glass or eating his food while he is sick. I am starting to suspect the flu shot I got him last year. The pediatrician's office recommended he get a flu shot this year but after reading about thimerosal in many vaccinations as a preservative, being a compound containing mercury I think I'll take my chances with the flu.

ehchemteach

11-30-2005, 03:43 PM

Hi:
Have you considered genetic testing for your child? There are several genetic periodic fever syndromes. My son has a working diagnosis of FMF. Although he just turned two, he exhibits many of the same symptons your son has. Most markedly similar is the headaches. My two year old complains about his eyes and holds his head. He is currently on a colchicine regimen at the suggestion of our doctor (a rheumatologist). Your son is also old enough to be eligible for possible involvement in clinical trials at NIH(http://www.niams.nih.gov/hi/topics/arthritis/prclinic.htm#1).

Good luck.

ehchemteach

01-03-2006, 10:33 PM

Our son's illness has been confirmed as Familial Mediterranean Fever, even though the genetic tests came back negative. However, his positive response to the prescribed colchicine regimen has proven successful, confirming the FMF diagnosis. The good news is that his fevers have stopped and probably will not return as long as he sticks to his pill-a-day regimen.

It was a rheumatologist that confirmed the diagnosis our immunologist had given us earlier this year.

We couldn't have asked for a better way to start the New Year.

claflamme

01-15-2006, 08:37 PM

I am so glad I found this post. My daughter who has just turned 2 in November 2005. Has been running fevers over 104 for just over 1 year now. Some for no apparent reason. She gets very sick and lethargic when her fevers hit. It is the most awful thing to watch her go through because she gets dehydrated everytime. She has been hospitalized 2 times. Last winter was awful within 2 weeks she had a cold that turned into rotovirus to flu then finally pneumonia. She has already had pneumonia this year christmas time 2005. Don't know where she got it from but most likely the bacterial one because it developed within 1 day the viral takes a few days. She is fine now. It is just waiting for the next fever. Usually every couple weeks it happens. The dr even looked at her chart and thinks she is sick alot. The weirdest thing is when she gets sick she hasn't been around any one sick within few weeks. I think she just has a very weak immune system. But I am going to ask him about this diagnosis next time.
Thank you for all the info I will do some research.
C

kajorgensen

01-18-2006, 01:54 PM

My daughter has pfapa, and started Kindergarten this year. We hadn't put her on the prednisone, but might need to now, so she might not miss so much school. Has anyone out there had to work with your school to give your child a consistent education? We're looking at an intermittent homebound program. Are there any other options?

Tory10

01-18-2006, 10:25 PM

Hi I'm 26 and have been diagnosed. I get them every week and have had severe to mild fevers for the last 4 years. I notice most sufferers are children. Is there anyone who is an adult who suffers from fevers or anyone who can help with an alternative to steroids in treating?

thanks

Elly

01-20-2006, 10:22 AM

Hello .....

i don´t write here a long time.
I told you for nearly 6 Month,that my son has PFAPA.
And that we are going to make a tonsillectomy.

The tonsillectomy was in September,and until then,he´s healthy!!!
Sice September,he does not have a fever attack,his legs or knees don´t hurt,he can visits the kindergarten/playschool,it´s fantastic.

I can say it to all of you: Try a tonsillectomy...... :)

My son is 4,5 years old ,now.

Greetings from Germany......

Michaela and Colin

claflamme

01-20-2006, 01:33 PM

I don;t know if this has any thing to do with it but my daughter who is 2,her right tonsil is larger than her left. I posted above about her fevers. I had to leave my job back in 2004 because she was always sick. I would love to get the fevers under control.
C

hjwilson

01-24-2006, 11:40 PM

Hi,

Our daughter is 12 years old. When she was 2-4 she had cyclical fevers and had her tonsils removed. The fevers immediately went away. For the past 8 months the fevers have returned. The fatique, joint pain and overall discomfort is worse tha when she was a toddler. Has anyone heard of a reoccurence after so many years? We are back to square one with our Pediatrician and being sent to Rheumatology again. More tests.....!

hjwilson

01-29-2006, 01:14 PM

Hi, I am curious to know more from bluemuse. Have your son's fever's stopped? My daughter also had fevers from age 2-4 1/2, had her tonsils and adenoids removed and then was fever free until just a few months ago. She is 12 now. I am wondering if the onset of puberty has triggered something again? We are heading back to rheumatology in a few weeks and hope they can give us more answers. How is your son managing school and friends? Thank you.

Jrhalstead

04-27-2006, 07:56 PM

I first want to thank everyone for writing information about PFAPA. My daughter is 10 1/2 yrs old and has just been diagnosed with PFAPA.
She started having fevers and symptoms just after her first birthday, for a long time we were told it was viral, but she was also tested for strep throat numerous times, she never had strep.
At 3 1/2 they removed her tonsils and adenoids. Her fevers stopped and she had several great years. Then at the age of 8 she started having fevers again, and this last year the fevers started coming more frequently, and her sypmtoms became much worse then they were as a toddler. The sore throats, stomach aches, headaches,& joint pain have caused her to miss over 16 days of school. We finally had further testing done by her pediatrician, and he sent her to the Rhematology clinic at Seattles Childrens Hospital.
At childrens hospital they diagnosed her with PFAPA, and gave her a prescription for prednisone, 2 tsps every 8 hours for 3 doses.
Now we are just waiting for the next fever to try the prednisone.
Has this worked well for other children? Are there any severe side effects?
I would like to hear more from hjwilson, have you found out anymore information for you daughter? I too was also wondering if the onset of pueberty was a trigger that caused the fevers to return after so many years without them??

swedcars

05-05-2006, 11:17 AM

Our daughter, who is now 3 1/2, had fevers early on. Our doc said ear infections everytime and gave an antibiotic. We went to an ENT doc and the next five fevers were NOT ear infection related (the others were not either, but the doc just guessed) he said it was just viral.
Next was a few UTIs (urine tests confirmed). We went to a specialist and she had 2 really bad tests done, her kidneys are fine. We then went to a infectious disease specialist who put her through several blood tests. The tests came back OK, except for the strepcoculous (sp?), 9 out of 12 were low. Her tongue gets white with every fever. She has had a fever every 2-3 weeks for about 6 months...before that is was bi-monthly. She also is stuffed up and coughing slightly with each fever. They are afraid to diagnose periodic fever... The Mortin hepls for about 3 hours, she plays like normal.

ANOTHER BIG THING IS slight hallucinations at night and weird dreams.
I read that Mortin can cause this...We were able to give it every four hours during the highest of fevers.

It is disheartening to see your child suffer with 101 - 105 fevers every 2 weeks. Our infectious disease doc said he may give a booster shot, or try the steroid when it starts...She has an appointment at 1:15 today. NOBODY can explain the white tongue, they say it is just dehydration, I don't think so. We thought it was sinus related, it seemed like an infection, but the docs said no.

Of course now she is scared of doctors and needles...

Anyone else have the white tongue thing? Anyone else have the cold like symptoms? Thanks

Bryan

oloaj002

05-07-2006, 12:07 AM

It so great to hear that others are struggling with this syndrome. We have a 4 year old boy who has been ill with fevers since birth. Like so many others we were told it's a virus. I gave up work and slowed down my studies to care for our son. We are now at the point where one of the many doctors has told us about PFAPA. Brendan has fortnightly fevers with terrible joint pain and the painful mouth ulcers sometimes. He has rigors so badly he can make our queen size bed shake. As a Mum I am emotionally exhausted. The thing that has made it so difficult to diagnose is that Brendan also gets a cyclic drop in his platlets, this is never within a dangerous count but is still low enough to cause serious bruising. Does anyone know of or does their child also have low platlets. The doctors are beginning to think that Brendan has two illnesses. We are waiting for the next fever which is due soon to try the cortisone. I only hope this will work for him. If any one knows anything about the platlets plaese let me know.

Jrhalstead

05-10-2006, 05:50 PM

Just wanted to answer the question about the white tongue, my daughters tongue does get all white when she has a fever episode. It could be from dehydration, lack of fluids. She has never had a sinus infection with the white tongue. She does get a cold with her fevers occasionally, but not always. The symptoms she has regularly with her fevers is the sore throat, head ache, upset stomach, & joint pain. Hope you found out more infomation from your recent visit to yhe doctor!

omerbilhan

05-16-2006, 06:21 PM

sm1231, what happened after you take the steroid? I really wonder because I am also about to begin steroid to my 2 year old son due to PFAPA diagnosis. It would be great help if you tell your experience about the steroids for your child.

swedcars

05-30-2006, 03:20 PM

After the last post, we went to the infectious disease doc. (our 8th visit). He finally agreed that it is PFS. Her tongue was white with "blisters." He gave the prednisone for the next one. Two weeks later (right on cue) it came and the prednisone knocked it out in one hour, tongue not white etc. Eight days later (2 days ago) she had another fever. We gave the prednisone, it worked within 8 hours, but not as fast as the first. Our doc said not to get hopes to high, but all 10 of his patients with this have completely kicked the fevers after the 3rd or 4th time using the prednisone. I hear this referred to as "fevers from unknown origins" quite often. The prenisone is a great thing, the only side effect we have seen is jittery and not wanting to sleep as easy (our kids love their sleep). If anyone has questions about this, please email me...

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05-30-2006, 03:25 PM

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swedcars

06-02-2006, 12:07 PM

Hello all! My daughter was diagnosed after two years of going through tests and thinking it is one thing and then another. So now she has PFAPA. I am not even sure if that is her only issue, she does have sore legs, high fevers, and mouth legions, but they are not sore. She also has a cough and spots on her tonsils. Anyway...since giving her the prednizone, the fevers are now coming every six days. Has anyone else had it come that often, the nurse seems to think that is too often and is going to have the doctor call. Every 6 days seems way to often to be on prednizone. The first time she had it, the fever was gone within two hours, now it is lowered, but she still has it for 6 hours or so. This is her third time of prednizone. My doctor said sometimes kids get over it after several doses, or else it is just a coincedense and they have outgrown it. Any thoughts on the subject would be greatly appreciated....oh one more thing....she had some UTI problems and they put her on prophilactic antibiotics...a low dose for 4 months...she had no problems during that time...are any doctors using the prophalactic antimiotics for PFAPA as well?

Thanks for reading my confusing jumble of thoughts from a MOM who is concerned, confused and just plain exhausted!
Thanks!
Jen

caleb99

06-12-2006, 02:20 AM

My son was one year old when he started getting his fevers. We went through numerous doctors , medicines, tests and treatments. At age six his fevers seemed to quit. Now he is seven and for the past 4 month he started the same fevers over again. Has anyone had this happen to their kids? His SED Rate is elevated as well.

My son went from a family practioner, to a infectious disease doc, to a Pediactric rhuemtology doctor who has done research in this area

perrypie

06-12-2006, 10:35 PM

It is so nice to know that we are not the only ones frustrated with the many unanswered questions regardning PFAPA. Here is our story...

My daughter started getting fevers just before her second birthday. Before she was diagnosed with PFAPA, her fevers lasted six to seven days and they peaked at 106 - 107, and were only kept below 102 during that week if I rotated tylenol and motrin every 3 hours on the dot - if I missed one dose even by a half-hour her fever shot back up. I was literally setting my alarm clock at night to give her these medications for a week straight. Also, she would vomit when her fevers peaked - early on these were the only noticable symtoms.

At first my pediatrician said the fevers were simply due to this or that virus but after the first couple of episodes I noticed that the fevers where cyclical - they came exactly 21 days apart. After two trips to the E.R. and five episodes later, I insisted that there was more to it than virus after virus and my pediatritian referred me to Oakland Children's Hospital in California. The PFAPA diagnosis was really only a process of elimination as test after test came back negative. They were at first reluctant to diagnose PFAPA because my daughter vomited with every episode - they said this was not typical for PFAPA patients. I was finally able to get her in to Children's Hospital mid-fever (the fevers always seemed to hit after-hours, on weekends or when we were out of town) and they noticed the leasions in her mouth.

Once officially diagnosed we were given instructions to administer one 3ml dose of Orapred at the onset of the fever. We waited and when her fever came we gave her the Orapred - I can't tell you how relieved I was when it actually worked! However, two or three episodes later the fevers started coming back a day or two later. Her dose was uped to 6ml of Orapred. this worked for two fevers then they started coming back again.

She has had these fevers for just over a year now and has been on Orapred for about nine months. All of a sudden the fevers have been coming closer together and she has had four fevers in less than a month. She will be 3 at the end of June.

Of course, no matter how confident I am in her doctors, I can never seem to get rid of that little voice in the back of my head that says PFAPA is just a fancy name for saying they don't know what is wrong with her - that perhaps she is living with something more serious than these periodic fevers with no real consequence to her long term health.

Also, I am curious to know the difference between Orapred and Cimitedine, which I've seen mentioned often in these boards, and their side effects. I've noticed no real side effects with Orapred other than mild loss of appitite and fussiness for a day or two after the dose.

I'd love to hear about similar stories and what has worked and what hasn't as far as treatment. I feel like my daughter is a bit lost in the cracks so to speak since her pediatrician is not familiar with the syndrome and Children's Hospital has more life-threatening deseases to deal with.

Thanks for reading my winded post. Any advice is much appreciated.

regmama

06-27-2006, 12:43 AM

This question is for those who may have had their childs tonsils taken out to help with the P.F.A.P.A ? How were the results and did it seem to help out at all? We have a 17 mth old and were just given this info. a month ago after many months of wondering what was wrong with her. She too had the symptoms of high fever, constantly thirsty, ulcers on her throat, swollen glands and just listless. She looks as if she is dying and we are so sad because we are helpless. We were told that the antacid med that starts with a 'c' could be purchased at Target. Then we were told that the steriod Predisone would help symptoms but make it reoccur more frequently and tonsils were last on the list of recommendations. Im thinking tonsils would be the best alternative as her throat hurst he so bad.

I just cant bare to see her go through this every month. This is just terrible!! It is nice to see that others have gone through this and have insight and can share with us on how they got through it.

I noticed that one mother mentioned her son complained of sore feet and my daughter has done the same. She also held her head and would cry in pain. Being that she is not old enough to tell us what is wrong makes it that much more frustrating for her and her parents.

Any advice to a new pfapa victim would be greatly appreciated.

eblodgett

07-10-2006, 01:45 AM

Ok, so I started reading all the different things on this website, and have been through much of it myself....but at the same time it is creeping me out a bit. My son just turned three this last week, and I have been through hospital stays, doctors, new doctors, infectious disease doctors, ear nose and throat specialists, and rheumatologists. It started with my son when he was about a year old. One week after his first birthday, I picked him up from daycare because he had a 103 fever, got home a half an hour later and it was over 104 then another half hour later it was above 105. At this point I took him to an after hours pediatrics group who then said they wouldn't see him because he needed to be taken to the hospital. Ever since this day he has had these extremly high fevers.
That night by the time I got him to the hospital, his fever was 106.7. His don't seem to happen as often as I've read about some, but his are about every four to five weeks. His doctors have always said they thought it must be ear infections or viruses until this last January. He was admitted to the hospital the first week of January for a high fever, and swollen lymph nodes. I had never heard anything about this PFAPA stuff. When the doctors admitted him they just said that it was because of the size of the lymph nodes, because it looked like he had swallowed a golf ball. He was there for several days, they said they would biopsy it, but they didn't. Then they said that they would do a CT scan, but they didn't. He was released on an extremely strong antibiotic that he was on for two weeks. The last day of his antibiotics, he spiked another fever. By the time I got him to the hospital it was almost at 107 again. They admitted him again, and ran tests for a week. It was so much trauma for my son that he was even having night terrors in the hospital. AFter about a week, an infectious disease doctor came in and gave me her thoughts on PFAPA. Since this time, I have tried to do as much research as I can.
My sons doctor has started giving him prednisone every time he gets a fever, but she only gives one or two doses and the fevers stop within a day. I am confused, because I have heard a lot of different things about prednisone. We are also trying to see about tonsilectomy because I have heard lots of good things, but the ENT that he went to said he didn't believe in this PFAPA thing and wouldn't do it. Does anyone have any ideas on this? Or is there anyone that has had the tonsilectomy and had good results?

Thanks...hopefully you can understand my mumbo jumbo and help!!

etta1211

07-18-2006, 09:21 PM

i just went and saw a immunologist today and this is the diagnosis so far without all the test done yet but eveything I read hits it on the nose. does anyone know why it happens and when it goes away. my sons been doing this every month and i wrote it down and low and behold it starts on almost the same day as my period each month. to say my house is nut with me being pms and the baby with 105.3 fevers for a week is putting it lightly

MERRIEKNITTING

07-24-2006, 02:34 AM

I really need some help to all of you out there who may be as frustrated as I am. My daughter is 2, and we have been battling for several months if not longer with recurring high fevers and sore throats about every 6 weeks or a little less. I've gotten to the point that I don't even want to take her to the pediatrician because he always tests her for strep ( because of the pus on the back of her throat) and then tells me it is a viral infection and that she is just prone to picking up stuff from other children. Well, I have 2 problems with that. One, she isn't in day care. She is in a private home with only her and her sister. Secondly, she has the same type of infection every time; if she was just prone to getting sick wouldn't it be different things each time? Anyway, over the last 3 months I have begun to notice patterns and doing some of my own research. She is fine and then suddenly begins running a fever of about 103-104. I usually control it with ibuprofen, but it only goes down to 102 for about 5-6 days. She has a very sore throat with pustules on it and will not eat and sometimes will not drink. As soon as the fever subsides, she is her happy cheerful self. Otherwise, we rarely have few problems with her health. Now that she is getting much more verbal, she is now complaining of her back being sore too. But I can't tell if that is just being in bed for a week. The last time I took her to the doctor for this, I made him aware that this was an ongoing problem and that I was concerned. He did prescribe her some codeine to help with the pain, and asked me to start journaling her illness. I have not taken her to the doctor for each episode because my school schedule does not allow me to take off work for such long periods of time. Basically, I'm venting here because we just finished her last "episode". But I would like to hear some practical suggestions for helping my doctor and what things I need to take note of. How long does this last, if this is what is wrong with her? How do you deal with your jobs having to stay home so much? And what do you do about school since the kids are usually sick for about a week every month or so?
Thank you for your time

hpendleton

07-26-2006, 03:00 AM

My daughter is 6 yo and has been just recently diagnosed by her pediatrician with possible PFAPA. She was admitted to Phoenix Childrens for 5 days this month and all her test came back negative except for elevated sed rate and crp. They weren't sure what was going on, but mentioned pfapa. They also weren't sure if she had a possible urinary tract infection. Therefore, they decided to treat her for a urinary tract infection. However, 2 weeks later the fever returned and again no other symptoms but the high fevers and swollen neck glands. She underwent more testing and all was negative except for the sed rate and crp. It was at that point I was talking with her pediatrician and mentioned the hospital stay and how they questioned me about a frequent fever syndrome. He decided to give her a dose of prednisone and the fever ended in about 14 hrs, instead of her normal 5-6 day course. We are still in the uncertain phase. She started these fevers about 6-9 mo ago and I have noticed the intervals between fevers went from 6 wks to 4 wks to 2 wks. I was happy to read that other people are familiar with this disorder. I had never heard of it before, but after reading several quotes I have found so many familiar symptoms. Thanks for the information. I will try to post how our treatment pattern goes!

amyebyrd

07-26-2006, 07:37 PM

Hello everyone, I am new to this board and I was hoping someone might be able to help me out. My son, Noah, is five and was recently diagnosed with mono about two months ago at which time he began running a fever that stays at about 100' and occassionally goes to 101'. The mono is now over, but the fever remains. We have had blood work three times and everything shows normal and the CT scan is normal. They are sending us to an infectious disease specialist next week to see what is causing the constant fever. Do either of these cause a constant fever that does not go as high as 105'? He was given a steroid for 5 days to help with the swollen glands and spleen during mono, at which time his fever seemed to subside and then came back quickly and higher than before. Also, tylenol and motrin do not help the fever at all. The motrin actually gives him nose bleeds. Does anyone have any suggestions for me. It is a terrible thing to know that something is wrong with your child and not be able to do anything about it.
Blessings to all and you are in my prayers.

carayod

07-27-2006, 10:20 AM

This is the first time that I've posted a message but I visit these boards frequently and want to thank all those that contribute to them. They have been a comfort and an encouragement.
Our son who is now 11 has had fever problems since the first months of his life. We spent many years giving antibiotics for tonsillitis, probably for nothing. His fevers lasted between 4 and 6 days. We have had several "remissions" but these episodes reappeared nearly two years ago with a vengeance. The symptoms were sore throat, mouth ulcers, sore legs, bad head aches, moderate stomach pain, vomiting and at times swollen neck glands. The doctor of more recent years kept telling me the episodes were viral. Blood tests showed inflammation. I changed doctors and things began to move fast. After an appointment at the Children's hospital with a specialist and blood tests in hospital during a fever episode we were told he probably had PFAPA. Having missed so much school already in the past, we were desperately looking for a solution. After several courses of Prednisone which seemed to work only on the fever (if he could keep it down) we decided to take his tonsils out. The operation went well but 3 weeks later we had all the same symptoms back again minus the fever. We have recently been for genetic testing for FMF since the specialist no longer thinks he has PFAPA. She says all the symptoms should have disappeared. I'm not sure what I think! The strange thing is that for the last twelve months at fairly regular intervals (about a month) he's been waking up at night and vomiting, several times, then the headaches start with tummy pains and ulcers usually present as well. I haven't read anywhere on these boards about other children doing that. Has anyone else had a similar experience? We have to wait quite a few weeks for the results of the blood tests. If anyone has questions about any of this please ask them and I'll try to answer. Maybe our experience can help others.
Take care

regmama

07-27-2006, 01:58 PM

Reply to etta1211 You mentioned something interesting that has me wondering. I too have my menstrual cycle the same time my daughter comes down with P.F.A.P.A. I know there are many boys that have P.F.A.P.A so makes it more complicated to understand but i wonder if it plays a role in all of this. I have been logging down each month things that she might be eating and behavior around the time of her P.F.A.P.A episode.

I think as parents trying to figure this out on our own it would be helpful if we listed things that we might all have in common. For example i have noticed that she has been my only child ( have two others) that has not been given much milk. She started having P.F.A.P.A a month after going off formula. She drinks mostly water and so i dont push milk as much as is should. This month i have been giving her more milk and her symptoms were not as bad. It makes me raise a brow to that. I will keep watching and will experiment and give her milk each day this month to see if things change next month. The doc at Riley Childrens Hospital did mention their is an antacid (cant remember the name) that would help some of the symptoms. I will look for that information but what if the two are related. What if there is something in milk and this med. that are related? Im no Doctor but just raising questions that may or may not be worth much. Just thoughts! What about you all? Do you all give your children milk? Are there pets in the home? Sorry but just trying to find what the each of our children might have in common that could be the culprit. I havent had much help from the medical field and doing as much research on my own. This is so strange and boggles my mind. It has me asking all kinds of questions, Why now....You never heard about this stuff 10+years ago.

regmama

07-27-2006, 04:48 PM

I just got off the phone with a professor of Clinical Pediactrics who has been giving us info on P.F.A.P.A and he does not think milk has anything to do with it. Still we will keep that in the back of our minds as it is odd.

I was also told the med. was cimetidine(tagament) and she is to take it everyday and should help all symptoms. We are going to give it a try once she is done with this episode. I will let you know how it goes.

carayod

07-28-2006, 10:33 AM

Hi again
Your comments about milk are interesting. I must say I can't make any direct correlation. I do keep a diary which I make entries in when my son is sick. For the last year that I've been doing that I can't say that I can see any pattern with any food or drink. My son is 11 though and probably wouldn't consume as much milk now as some younger children. He had shocking bowel inflammation as a baby and had to have a predigested medical formula - he couldn't tolerate my milk or any "normal" formula. Allergy tests (bowel scrape) did not show however that he was allergic to milk, though by want of a better explanation they put it down to that. His older brother had that too although he doesn't get the fever episodes. My specialist seems to think the whole thing is not allergy related as the episodes are too cyclical for that. In respect to the questions about "cimetidine" we live in France now and I must say the specialist has never ever mentionned its existence to us though I see through my reading on these boards that it is used quite a lot in some English speaking countries. Here, cortisone seems to be the favoured drug and then a tonsillectomy. Maybe my son's age has something to do with some of those choices.
Keep up the good work everyone..........thanks for your contributions.

Hannahls73

07-31-2006, 01:25 AM

Hi there - I don't know if anyone will read this or not - but we are going through something right now with my three year old. He's been getting sick for about a year - with no known reason really. I finally started documenting the last three months and I took it to his Ped on Fri and they are running tests again. We've been to ID twice already where PFAPA was ruled out - I am not sure why other than I didn't have any documention to back up my story - and they ruled out JRA. He did have this huge lump on his neck and they sonagramed it - and find it to be nothing. They told me that if it was lymphnoma it wouldn't go away. And it does - but then when the fevers come back his neck gets sore again - we've been to the emergancy room twice with possible menagitis scares cause he wouldn't move his neck. But they said it was just pain from the fevers.

SO - have any of you heard about this lymphnoma thing - that if you have it that it won't go away? Cause now I am scared again. They also told me that if it was cancer or something like this that he wouldn't "recover" between the episodes. I don't know. I am really scared- and my husband is one like yours who figures if he doesn't acknowledge it then it must not exsit. I went back to work this past year as a teacher - but I had great family support. I hate depending on my mom to watch my kid (not that she minds) but I also know that my parents want to travel now that they are retired.

I don't know. If anyone reads this and knows about the lymphoma thing then I would appreciate a comment back. Also - if anyone wants to tell me if they actually KNOW of anyone who has outgrown this thing then I would appreciate that as well. The outgrowing thing is starting to seem to me as real as a unicorn. I guess I am just getting depressed about it.

Thanks for reading this - and please keep us in your prayers as I will keep all of you in mine,

Hannah

Hannahls73

07-31-2006, 02:21 AM

Man oh man. I feel like crying. I just sat and read all the post on this website and I can relate to so many! I can't believe that my son has something so . . . uncommon. You know? You hear about kids having rare disorders - but you never think your own will.

My son turned 3 in May, his name is Aidan, and he has been getting sick since he was 2. At least that's when I started noticing. Because what kid is sick during the summer? Rarely is there a "reason" - ear infection, bronchitis etc. And normally during those times he and his older brother (5) have it.

We have been to ID because his SED was 80 something and his CRP was high. They kinda dismissed us and said it wasn't JRA. And he looks good! Well of course he did because he wasn't fevering.

We have been to the emer. room a few times and after hours care a few times - for possible menengitis. Because he wouldn't turn his neck. But he was 'okay" and they sent us home.

Then he got this huge lump in his neck and was sent to get a sonagram on it - but it was okay. I was assured that it wasn't lymphnoma - because lymphnoma doesn't go away. Those people tend to get sicker and sicker. But he recovers between cycles.

WE went back to ID - and they tested his immune system and said he was fine - again.

So Fri he started running fever again and I took him into the ped and showed him a calendar (Ii only started charting three months ago) of the three month pattern. It was 30 days, 34 days and 35 days in between. So he checked his blood in the office and his white cell count came back normal and whatever else they check their came back normal. So no lukemia (thank God) - but now we are waiting to find out the results tomorrow on his SED and CRP. And whatever else he was testing - I think his ANA.

I have been hearing for a year that it's a virus - even though his brother never had them.

I know that it's not 'life threatening" - but do we really know that? Really? And what about these kids that I am reading about on the board who have had their tonsils out to "recover" only to come down with it again when they are older? Would they still if they had their tonsils? I hate the uncertianity of it all.

And - (sorry this sooooooooooooooo long - but I have all these questions) what are the long tern effects of using more than a bottle of motrin a month and tylenol on my child? That can't be very heathly.

Ugg. Why can't they figure this out? Wouldn't it be cool if we could just all gather in one room and TALK and bring all of our notes? But of course - trying to figure out a time when one of kids wasn't fevering would be impossible. :)

I feel so bad for him. He's only 3 - and before I started reading all of this I've canceled kids coming over so they wouldn't "get" what he's got. My five year old is housebound as well - I feel terrible for him.

I have felt like the worst parent. Like maybe if I remembered to make him wash his hand EVERYTIME before he ate he would be fine. Maybe if I made him eat those darn green beans then he would be fine. Maybe if we adhered to a better bedtime schedule he would be fine. Maybe if I hadn't gone back to work last year then he would be fine. I still feel like the worst parent - I mean - something causes this - what if it's something I've done????

Sorry sorry sorry for the rant . . . I just feel so helpless. If anyone has any answers or comments to my inane thoughts then please reply - I would love to hear from you all!

Please keep us in your prayers as I will keep all of you in mine,

Hannah

summerday148

07-31-2006, 02:15 PM

Hannah,
We've all been there. My daughter was finally diagnosed with PFAPA last week and now I keep thinking this has to be the last episode. After all the time, and work, and listening to doctors telling me its a virus, now that it's diagnosed...it will just stop. (Maybe I'm just hoping that we are wrong)

There is a conference in Hershey on September 9th. I think I am going to take my daughter. I learned about it through the yahoo board.

I told my daughter and she was so excited (she is 5) She said, you mean I get to play with other kids that have the "sick" like me??? I didn't realize that she was going through the same thing as I was thinking that I was the only one going through this.

I know that it's scary when you dont know and it's your child. It's easy for other people to say it's not lifethreatening, and its just an inconvenience,but it's a lot harder when you're the one living with it.

Trish

Hannahls73

07-31-2006, 05:43 PM

Thanks Trish - I guess we are on 2 of the same boards! I am still waiting for my Ped to give me the results of the SED, CRP and ANA today.

Nice that there is a conference in Hershey - we used to live in NJ - too bad we aren't there anymore! It sure would be a lot closer than Tx. I forget - how long has your daughter been going through these fevers? I think we have a year under our belt. Well - at least a year.

I am a teacher - and I am now trying to figure out how I can take up to a week off every month - my husband gets 5 weeks of vacation a year - so maybe between us we will manage - but if this cycle goes on for several years - then I can't imagine working - but it would be really tight without the my money - :) Do you manage to work and take care of your daughter?

Thanks again Trish . . . I wish no of us were going through this . . .

Hannah

summerday148

07-31-2006, 09:03 PM

Sami has just been getting sick since last October. She has always been sick a lot, but that is when I started to realize it is about every month. She was hospitalized over memorial day weekend for 3 days and that is when I started to track it. It has been every 26 days give or take a day. Like I said before, I still can't believe she actually has this.

We live in Illinois, so I haven't decided if we are going to drive or fly. It's kind of a bummer because that is where I took my kids for vacation just last month. So I dont really feel like turning around and driving back! My husband says just to read on the internet...that is his answer for everything..."just google it" But I think it would be nice to meet more people going through this. Especialy since we are just beginning.

Yes I work too. I have been lucky to this point because I have older daughters who have been able to stay home with Sami. Sami will be in 1st grade and I have already started working with the school. My job has been very flexable with me so far. My husband can't (or chooses not too) miss much work. My job has always been the "second job" We are just so used to my income. I will just be playing it by ear this year. Like I said, I'm still not convinced that it will continue.

Trish

summerday148

07-31-2006, 09:08 PM

Hannah,
I was just thinking. Whatabout speaking with the babysitter and do the same thing I am doing with the school. By getting a letter stating that they are not contagious and pose no risk.
Trish

moderator2

07-31-2006, 10:04 PM

Please read and follow the posting rules.

Hannahls73

08-01-2006, 12:15 PM

Yeah - that's a possibility. I know he feels terrible when he has the fever though so I hate the thought of taking him to school. He and my five year old go to a little church school right across the street from where I teach - talk about conveinant! There were so many times that this past year (my first year to teach) that his school would call me after nap time and say "you need to come and get him - he's fever 102" or whatever and I would go and get him and finish out the day with my second grade class with him on my hip. It's hard - cause really I just want to take him home and let him rest on the couch . . . but at least no one said anything about him being in my classroom - the superintendant said when someone complained (not at my school - but at another campus) about people having their sick children at work - that he thought it was admirable that people were so dedicated that they didn't want to miss a day of teaching - more like they were glad they didn't have to pay a sub . . . :)

I will talk to his school though . . .

Illinios huh? That is a drive to Hershey . . . when is the conference?

Hannah

summerday148

08-01-2006, 03:03 PM

Most of the time, not always, Sami usually feels ok during the day when the advil kicks in. Deffinetly more whiney, but ok enough to make it through the day. She starts to get miserable around 5 or 6. By that point she is done with the world and wants only to go to bed.

My husband and I differ on this. He wants her home anytime she has a fever (of course he doesn't offer to stay home with her) But I think if she is up to it, I'm going to leave her there.

Trish

mamoda

08-02-2006, 05:03 AM

We just got a possible diagnosis tonight after a year of fevers. :rolleyes: Our DD is 18 months. I am really afraid of the steroid treatment. I would love to learn of other options. :confused:

summerday148

08-02-2006, 09:39 AM

Sorry to hear that, I know your feeling. I still have not given my daughter steroids. [ REMOVED ]

Good Luck...
Trish

regmama

08-02-2006, 08:48 PM

This is just information i recieved from our doctor on prednisone that it will will make the episodes more frequent. According to studies of others who have P.F.A.P.A. the steroid will clear up quickly but occur more frequently.

I feel your frustration and sadness for your children. We too are so frustrated and would like answers. I am so thankful to have your stories and input. Take care and God bless.

Hannahls73

08-03-2006, 12:22 PM

I talked to Aidan's school - and can you believe it? The Admin. said her daughter had the same thing from when she was a baby till around the time she started kinder . . . she is now 11 and still has them - but only like every 6 months - so she told me to get a letter excusing his fevers as not contagious and she would let him come.

So I talked to the doc and he said no. He said we don't know enough about it - or Aidan's fevers - to know if he really does have a virus or is cycling ... so okay.

But I thought it was interesting - that her daughter had it to. They told her that it was just something that she woul outgrow - they didn't diagnosis it as anything.

So maybe your ped. will be different and give you an note.

Thanks!
Hannah