Hi everyone,
Yes I guess now my postings are working. My daughter is 17 months old and has been having "unexplained fevers" since she was 3 months old. (just after her immunizations) the doctors say it is just coincidence. If something was wrong with the shots other kids would of showed up and so far it's just been Dom. Anyways she has had all the tests and the auto immune specialist has ruled out nutrepena, mediterean fever syndrome and doesn't want to label her as having pfda because she has no other symptoms. He says the steroids don't always work so doesn't recommend them He has formed a study group with two other specialists : a hemotoligist and a rhumitory arthiritis specialists( excuse my spelling) they plan to discuss Dominique at this months meeting and see if they can concur on a course of action. He mentioned a medicine that he had tried on another patient of his that was a plant extract (iris I think) that has been used in turkey for ages to treat all sorts of things. It is not a steroid and has no ill side affects . He will discuss this with the other drs and I will see him again in mid sept. These specialists all see a few cases like dom every year and don't know what to reccommend..they hope by meeting once a month and pooling knowledge they can come up with some answers.
I really hope so. Has anyones child outgrown the fevers? Can someone describe a typical episode so that I can compare it to my daughters. She gets a fever every 19 to 25 days varying and they last anywere from 3 to 4 days with fever spiking to 104' up and down but never really lowering back to normal until the last day . We give her tylenol and motrin but try not to give her the motrin because she vomits it up. the tylenol is in suppository form and seems to help take the edge off the fever. We though of not giving her anything but because of her age we can't get her to keeping a wet cloth on her head or hot spots or eat ice cream.
ana

Hi ana from Canada. Sorry about your child and you going through all of this. My child who is almost 4 has had periodic fever syndrome since 1-1/2 years old. She started with her fevers about every 4-6 weeks and now she gets them every two weeks. Her fevers use to last 4-5 days with swollen lymph noids and ulcers on her throat. Her temps ran as high as 105 and we treated her with motrin and tylenol alternating. She would get sick on the motrin but I would first give her Tylenol to bring her fever down and a bath and get anything to eat or drink in her system about an hour later I'd give her motrin and then alternate as the bottle would suggest. I spent hours upon hours holding her through the night and day and just loving her. Now the every two week fevers are successfully aborted by Prednisolone, as her fever starts she get 5ml. of her med. and with in an hour or so she is back to normal. Sometimes we have to give her a second dosage because she might have had a different virus that wasn't related to the syndrome. It get's confusing but in time everyone adjusts. Please consider the Prednisolone even if your doctor is not comfortable with it. Our immunologist in Denver was very comfortable and familiar with the drug. My Pediatric doctor is Dr. Arnold at Kaiser Permanente and she has done an extensive amount of care for my daughter, call her or have your doctor call for more information on it. Let me know if you want furher information to get a hold of these doctors in Colorado. Take care. Sheri

thank you for your feedback to my questions. I have an appointment with our autoimmune specialist in a few weeks. I will see what he has come up with and will reccommend the pred. medication and see what he says now. Do you give it to her all the time or just when the fevers start?

thanks again for your response.
ana

Hi ana. We give Jessica 5ml. only at the beginning of her fevers and if by the next day or so she still has a slight fever we give her another half dose. Then she doesn't get another dose until the next fever. Which in her case it is every 2 weeks. In your case, your child would only get a very small amount every 4-6weeks so there should be some comfort in knowing that. Good luck at the doctors. Sheri

Hi sheryl,
thanks for the feedback. Our Dr got back to us and suggested 3 courses of action.
take the steriods
take the colchicine ( from iris plant used to treat gout)
but he has used it sucessfully before
do nothing and wait to see if she outgrows it?
I'm still researching into all the medications and he wants to do more blood work on her just before the next fever and during to see if they can decipher what causes the fever. I have until then to weigh my options.
I will let you all know what we come up with and how it works.
Is your daughter doing well on the medication? Has she experienced any ill effects? ( I'm most concerned about the possible growth inhibiter) she's not that big to start off with and I can't imagine her not growing .
thanks again
ana

I just found this board. My mom actually came across it the other night. She told me there were a lot of people posting about Periodic Fever (PFAPS). My son is four and has had it since he was three months old. He wasn't diagnosed until he was 1 1/2, but the fevers seemed to start after being hospitalized for rotovirus and subsequently catching RSV in the hospital. I haven't done much research on this since I found out finally what it was and got the steroids which gave him more comfortable days initially. Though over time the fevers got even closer together after being on steroids for five days at a time during the fevers. So, I asked the doctor about giving the steroid for less days and that seems to help. Sometimes I don't have to give the steroid because now that he is a little older the fevers aren't always as severe. He also had a six month period of no fevers. I was hoping he outgrew the syndrome. I have heard they outgrow this. I hope that is true. The study I first read said a lot outgrow this by age 4. But we haven't outgrown it yet. My son can tell me now when he is about to get a fever and he asks for Motrin and Tylenol. He hates the steroid, but I talk him into taking it when I cannot get the fever to stay down with the others. The other frustrating thing is when I know he has this and he has to miss his activities. Now that he is older he tollerates the fever better while medicated and he does more than just lay there. He will play even with a 102 fever - that probably feels great compared to 106. I can tell he is going to have a fever because he stops eating, now he gets mouth sores, but he used to not get those. I read in the study that would happen. I guess his doctor forgot that would happen b/c when I mentioned it this last time he said "oh, maybe it was something different then". I don't think so.

It is frustrating as a parent b/c other parents think you are exagerating and so do the doctors. I hate seeing my child sick so often and he hates being sick. It worries me to leave him at school b/c if he doesn't get the medication soon enough he will spike a high fever. It is also frustrating b/c his appetite is deminished so much of the time. Also being that he is sick so often we have to let him drink (eat if possible) whatever he wants during the fevers. Now he is so picky it is unreal. He spits things out and gags. He is doing a bit better with eating as he is getting older, but it has always been a big struggle getting him to eat.

My doctor gave me some stomach medicine to try. I forgot the name (zantac), but I am afraid it will cause liver damage if given daily. I do give it for upset tummy though.

Any feedback is appreciated. I know this is long. Sorry.

When did your kids start having the fevers? What is working for you? Has anyone stopped having the fevers? Did anyone else start having these after RSV?

One more question.

Did you guys have sed rate tests done on your children? What were the levels, if so? Also, was the test performed during a fever episode or after?

I want to have another test for my son who had a sed rate of 47 (I think, may be it was 67, or 74 - now I will have to look at the record) when he was 1 1/2 now he is four. I knew that was elevated b/c a normal rate I read for that age was around 15. His doctor told me it was elevated, but nothing to worry about so I asked the number and he told me. Then I told him I wanted to find out what was going on with my son. Now I have a different doctor for the past three years, but even this doctor annoys me b/c it is like now he is comfortable with my son's fevers and he is pretty passive about it. He treats one or two other cases now. I have also heard this is a diagnosis that is being made more and more frequently for fevers of unknown origin. I wonder if it is being misdiagnosed or if it truly is increasing?

hello all,

my daughter has been diagnosed with PFAPA. She is 2.5 years old. I have done much research on this topic, and have found the article in the Pediatric Journal of medicine, which I carry to all dr appts. There has been only one study on this, and that was in 1987 I believe. The drs. on the study are Dr Alexander R Lawton and Dr Katheryn M Edwards from Vanderbilt University, Dr. Kastner from NIH, and Dr Henry M Feder Jr. from the University of Conn. Health Centers.
I have heard, so don't quote me, there is talk of another study being done within the next two years. If possible, try and contact these drs. I have there email and phone numbers, but am not sure they can be posted on here.

I have opted to go a more natural and homeopathic route for my daughter, we also do chiropractic care. I was not comfortable with administering prednisone, and cimetidine, and knowing that there is no real cure yet, I made this decision. We have seen a difference, and feel comfortable continuing with it.
so, for those of you with children that have these periodic fevers, I feel for all of you, I have been there. It is tough.
One last thought, those of you who work outside the home, check into FMLA ( family medical leave act)
Also, Knowlege is Power, and will bring comfort

take care
Paige
mom to chloe

[This message has been edited by moderator2 (edited 09-22-2002).]

Hi everyone,
In answer to tiredmom 0798 ,
my daughter started at 3 months, shortly after her first immunization shots? Her sed rates have always been within acceptable range , but they are now looking deeper into all her tests to find a reason behind the fevers , to hopefully end them not just treat them.

Hey paige ( cqmom)
I am also taking my daughter( 18 months ) to a chiroprator . She has found nothing extra ordinary in Dominique but did find that she needed an adjustment in her upper back and neck. What other avenues have you tried? I was thinking reike ( japanese healing) , acupuncture, naturalpath or homeapath as well but not sure which to try first? Have you tried any of these?
If you did how did they help? ( releive the fever a bit or did they abort the fever?) I appreciate your help with this as I too would rather avoid the steriod medications and the other medicine my dr. was thinking of also has horrible possible side effects.
thanks
ana

Does anyone else notice behaviorial changes after taking the steroid? My son gets hyper afterward.

About the Reiki (sp?) My mom went to one a week ago for her leg pain and she has been doing much better. It was $50 for an hour and my mom stayed an extra hour for another $25. She will be going back. Also while she was there the lady did something that helped my mom's sinuses. I am not sure about the whole reiki experience. I know there is a lot of talk about angels, and releasing negative energy. It is different. Some people might think it is weird, but I don't think it hurts anything. My son believes in angels and everything like that so I may let him try it. I think the benefits are similar to the benefits of massage. I am even going to give it a try for myself for my sinuses since it helped my mom who hasn't been able to blow her nose in 6 years and has had surgery on her nose to help her breath through it. After the massage by the reiki lady she could blow her nose the next morning. So, I may take my son during his next episode to see if she can help provide some comfort. He likes massage so I see no harm in it. Of course I will still give the Motrin and Tylenol.

hi ana

chloe has had chiropractic care, just adjustments. She is also doing homeopathic remedies, such as belladonna, aconite, and chamollia. we give these too her when she starts getting the fevers. In the past three months, they have only lasted two days, and never getting higher than 102.8. Chloe would be sick on average five days with high temps at 105.6. She is now having big gaps of feeling great, during the episodes. We also are doing what is called electro dermal screening, which tests for all sorts of things to see if her body stresses. things such as immunizations, detergents, molds, the list goes on. If there are items that stress the body, a homeopathic remedy is given and a month later retested. We have seen a change with this, and will continue doing it. You can read about the electro dermal screening online.
I am interested in the reike, i have not heard of that. Thanks for bringing that up.
good luck, hope this helps.
paige

ps since doing homeopathic, chloe only recieves motrin, advil or tylenol at night. she used to live on that around the clock with her episodes

I am not sure if this is exactly the right arena for this, but...

My daughter is 5 1/2, and has been having cyclic fevers (up to 106.7) since she was 8 months old, every 4th week to the point you can plot them on a calender. She has been hospitalized numerous times, as the fevers really dehydrate her, and can get very hard to control. During our last hospitalization, a very astute med student went online to search for a cause for the fevers, as our new pediatrician thinks the "virus" we have been told she gets every month is a nice way of saying no one knows. He came up with this PFAFP, and I must say, the description fits her to a "T".

We are now coming up on the 4th week, and you all seem to know what that means. On Wed, I should get a call from the school because she is burning up.

Now, I would like to know, when giving the steroids, do you give them as soon as the fevers start? Are there any particular labs that can be abnormal before OR after the fevers begin? (I know there are no labs for this in particular, but am very interested in any abn. values that might correlate this)

Also, are there any docs out there that are really into this? That seem to know alot about it? Maybe we can't post that sort of personal info on this, but it is worth a try, as our pediatrician is amazingly openminded and I know would be willing to call virtually ANYWHERE to find answers for us.

My heart goes out to you ALL, I cried when I read it the first time, as I empathize with you and know how frustrating and terrifying the whole ordeal can be (for both parents and child.)

Thank SO MUCH.

hi,
PFAPA is a mystery disease with no known cure, and no real reason. There has been one study done, and listed in a previous reply, I wrote down the Drs. involved in the study. It would not hurt to contact Dr. Kastner at the NIH. To get that info, go to the NIH website. I know that he has been very helpful with other parents/children that suffer from this. I hope this helps somewhat. Also please check for other PFAPA support groups. I know that they have all the emails and phone numbers of all the Drs that have worked on this research

paige

hi everyone,
Dom just finished her most recent eposide and of course it came earlier than I thought , so the tests the dr's wanted to do will have to wait until oct. now. The better news is that this eposide was much milder and she needed much less tylenol ( she went more than four hours in between dosages). It also only lasted 3 days with the first and last day needing only 2 dosages of tylenol. This could just be an isolated eposide or maybe it was the chiropratic treatments that helped or all my family's prayers, whatever it was it sure helped. I plan to take her to the chiropractor again just before her next eposide just in case.
I hope this might help someone else's child as well. I will sign in again next month to let you know how her next eposide was.
take care and keep your hopes up
ana

My daughter is now 2. SHe has followed the same path as so many of you children have. Fevers of 106.4 for 6 nights every 4 weeks like clockwork. Started one month before first birthday. Many Many lab work ups finaly seen at Bosotn Childrens Hospital.. Imuloigy refferred her to Rhematlogy. More test, SEd rate within normal range(Although on the high end) all IG's noraml except for IGD4 which was very low(commomn though) neg for rhematoid factor, very high CRP rate 10.4 normal range is under .5. DX Genetic Rhematoid disorder with Periodic fever syndrome. She has been placed on Colcocine. She did not haev a full blown eposode the first month on meds but did just cycle into a full blown one. We are currently uppin her meds. Was wondering if any body else has/is usung thias med? Doc's say she will need it for life to help keep the CRP levals down as th eelevated levela are very dangerous for the heart. I say lots of mention of Immuligts b but no Rhemotlgists, any one haev Rhem experience?

hi there,i am also fr canada..alberta in fact,,and my daughter is 5 almsot 6 now,,and for the last 2.5 yrs has been getting extremely high fevers,i am getting so tired of drs saying its only a virus,,and it will pass,,the fevers she gets all the time are only worring you and not harming her,I was told by a dr to day In a hospital.her fever was 106."DONT WORRY HER BRAIN WONT MELT" it was sickning,,,,so what sort of test did they do,,,to dignose this? who do i turn to?any idea's please help....i live in edmonton alberta,,,if u can recomend anyone....thank you
Originally posted by acloutier:
Hi everyone,
Yes I guess now my postings are working. My daughter is 17 months old and has been having "unexplained fevers" since she was 3 months old. (just after her immunizations) the doctors say it is just coincidence. If something was wrong with the shots other kids would of showed up and so far it's just been Dom. Anyways she has had all the tests and the auto immune specialist has ruled out nutrepena, mediterean fever syndrome and doesn't want to label her as having pfda because she has no other symptoms. He says the steroids don't always work so doesn't recommend them He has formed a study group with two other specialists : a hemotoligist and a rhumitory arthiritis specialists( excuse my spelling) they plan to discuss Dominique at this months meeting and see if they can concur on a course of action. He mentioned a medicine that he had tried on another patient of his that was a plant extract (iris I think) that has been used in turkey for ages to treat all sorts of things. It is not a steroid and has no ill side affects . He will discuss this with the other drs and I will see him again in mid sept. These specialists all see a few cases like dom every year and don't know what to reccommend..they hope by meeting once a month and pooling knowledge they can come up with some answers.
I really hope so. Has anyones child outgrown the fevers? Can someone describe a typical episode so that I can compare it to my daughters. She gets a fever every 19 to 25 days varying and they last anywere from 3 to 4 days with fever spiking to 104' up and down but never really lowering back to normal until the last day . We give her tylenol and motrin but try not to give her the motrin because she vomits it up. the tylenol is in suppository form and seems to help take the edge off the fever. We though of not giving her anything but because of her age we can't get her to keeping a wet cloth on her head or hot spots or eat ice cream.
ana

Suggest that children with the fever problem listed go see a doctor that is in the alternative medicine field. We give infants shot after shot after shot and expect their systems not to be affected. Traditional doctors are not "with it" ! Go to WWW.ACAM.org (http://WWW.ACAM.org) and check for a doctor in your area. They could help. Did you know that MANY of the vaccines used for infant shots are, of all things, MERCURY based ? One of the most deadly heavy metals known to man is used in these vaccines. Some childrens systems just cant handle it. There is ways of getting the mercury out of the body and a good ALTERNATIVE Doctor will be able to help you. You may not beleive in alternative medicine but I urge you to just give it a shot. It could save your child from an adult disease that the "medical profession can't figure out", such as MS and other nervious system problems.

My son is 12 years old and has had FAPA syndrome since he was two. From age 7-10 he had very few episodes, but we are back in the cycle now, although still not as frequently as when he was little. At one point, it was every 2 weeks like clockwork. He responds well to Prednisone. This syndorme is SCARY and a real pain-my son missed out on so much when he was younger. We have dealt with this for so long now that we are starting to feel like experts. This is the first time I have ever seen a "support" type of group. Hardly anyone has heard of the syndrome-including most primary care doctors. My son was diagnosed at All Childrens Hosp in St. Pete. I would love to communicate with other parents and families dealing with this!

My daughter has also been seen at Children's Hospital in Boston and they put her on Colchicine too. I just started a very small dose last week after a particularly bad episode of fever. Now she just started another fever yesterday. Her Rheumatologist tells me to give it more time. She's been getting these documented episodes for a year although at 2 years old I would call them her "mystery fevers". She typically gets fevers lasting from 2-4 days with fevers that have been as high as 106 - 102, always with white spots on the tonsils, swollen neck glands, chills, very tired and lethargic, headache, achy legs. I alternate Tylenol and Motrin which some episodes helps more than others. We had genetic testing done for Familial Mediterranean Fever at BU which came back negative which was no surprise since she doesn't fit the ethnic background. I've been surfing the net tonight for any new info and came upon this forum so it's good to hear that there are others in the same boat.

Hi. I am new to this board.

I have a 14 year old daughter who has been having fevers since she is 5 years old. Her is not similar to any of yours that I have read so far.

She gets a fever every 3 months, which lasts for more that 2 weeks at a time. At the beginning of the attack her fever is low around 100 and by the 5 or 6 day it spikes up to 105. Since she has gotten older it seems like the length of time has shorten so the fevers seem to last only 8-10 days.

Also she seems to only get a fever for 1 to 2 hours a day around 3p.m.

She has been to a Rheumatalogist (spelling) at Mt. Siani in NYC. He has ruled out FAPAS and FMS.

He just did some blood work to check to see if she has HIDS whic is Dutch Fever, but since we are not Dutch he does not feel she has HIDS.

He is recommending that we go to NIH in Maryland to have her seen by Dr. Kastner and have her genetics checked out.

I have been so fustrated to no answers for these fevers. She does not have the typical FAPAS symptoms such as fever sores, Vomiting.

Her symptoms are: Fever once a day for 1-2 hours ranging (100-105)She is given motrim to break the fever.
Headache when she gets a fever
Chills before fever
Hands and feet are cold
Her IGD is elevated
Does anyone have any ideas.

Thanks

------------------

wow - what a relief to have found this board. I have been surfing the internet under fevers, children, thypoid...anything I could think of - I'm not even sure how I ended up here but it sounds like im in the right spot. My 2 1/2 year old has had three high fever episodes in the past month or so. Visits to the emergency room and doctors office were unsatisfactory. Just yesterday we took blood tests for typhoid, typhus and a general blood count.
The use of steroids really scares me - we are a pretty natural family and up until now I thought I would never use baby tyelenol on a regular basis - then again I was sure my child would never own a plastic toy! Anyway... I am very interested in hearing if any holistic approaches have worked on your children and what they are. I will post whatever I find as I talk with my connections and observe any results with my daughter. Thanks Sams Mom

sheesh, I thought I had the only baby with night sweats that drenched her head to the midline of her back this had happened on and off her first three years. The doctors said it could be nurmerous things. I was blown off till we got back to her original Doctor- she tested negative for luekemia. I think it is related to shot reactions. When I was a kid I think we only had to get 4 at the most. Now its like 17 .D if D , D if D't. What is weird is she had one last night- she has not had vaccines in a while. This sound strange but, sometimes sweating is caused by constipation.

Hi,
My daughter is 22 months and for the past month has been having high fevers (101 - 103.6) periodically only at night. I have heard of Periodic fever syndrome but do not know enough about it to pursue it. Can some explain what it is or where I can get some information. I would really appreciate it.
Thanks!

Did you read above? I know its alot. Read GT4990 reply and also Cqmom reply she mentions going to the National Institute of Health site www.nih.gov (http://www.nih.gov)
and contact Dr. Kastner. Also mentioned something about colcocine.

[Please read and follow the board posting guidelines
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Address board concerns to the moderator privately by email.]

[This message has been edited by moderator2 (edited 04-08-2003).]

Thanks, hey there. I did read the above and I'm having a hard time locating that paper the cqmom is referring to. Maybe someone can provide a link? thanks!

I have a lump that has been developing over a number of years on the top of my head just in front of the hair line (sadly receding slighty).

It affects my confidance and I have been told by a GP that it is muscle tissue and that he would be to afraid to remove it. The lump is soft and about 1 and a half inches in diameter and is probably raised by about half an inch.

My issue is how can any doctor be sure of exactly what it is just by feeling it and why can't anything be done about it even if it is muscle.

What should I do?

Can anyone help me?

Thanks

Kevin

If I were you, I'd go straight to a rhemotologist because alot of times docs think it can't hit kids very much and it does! Skip the pediatrician or the family doc. I do alot of times and I am happy with the outcome over a fam doc or pediatrician. I don't care what people think. I've been there, done that.
Fam docs and peds missed my daughters problems for literally 11 years and more! I started going to specialists and found out gobs of disorders that I never knew! Amazing, isn't it????

------------------
ShaBaby

Sams Mom,
We are olso a 'natural' family fron Santa Rosa and looking for a GOOD pediatrician in Sonoma Co. for our 4 year old. We used to take her to a homeopatic/ family doctor, but now we feel she needs a pediatrician (she has had a few problems last year).
Do you know any good ones?

We have a six year old that has had many of the same symptoms you have discussed and we are all tired. They went away for about a year and are now back. We just got back today from a pedeatric rhuematoloist and she said PFAPA. Based off some information she had if our son has his fever again we are going to look at tonsils and if they show any signs of inflamation we are going to take them out. She said kids in studies whom have had their tonsils out and shown a high rate of no more issues. I'm 43 and my brother and sisters all had our tonsils out when we were young. My mom says we were sick all the time prior to them coming out. Is it possible we are so advanced to miss something this simple. Not one doctor has suggested it yet although we have seen blisters and sores when he is in his week of pain? For those of you who have kids with this appaerant diagnosis have any of you had their tonsils removed and still seen the same symtoms?

My daughter is nearly 2 and one half years old. Her fevers come about every 16-25 days, and have been doing so since January this year. Has anybody noticed if these things get better in the summer months? Here in Australia, summer starts in December and goes through to about March. My daughter's first five fevers were diagnosed as tonsillitis, the next eight were "viruses" and the last one was "probably tonsiliitis". Although her bouts started in January 2003 (the height of summer), we were kind of hoping that thaey would maybe ease up a little over summer.

My daughter is nearly 2 and one half years old. Her fevers come about every 16-25 days, and have been doing so since January this year. Has anybody noticed if these things get better in the summer months? Here in Australia, summer starts in December and goes through to about March. My daughter's first five fevers were diagnosed as tonsillitis, the next eight were "viruses" and the last one was "probably tonsiliitis". Although her bouts started in January 2003 (the height of summer), we were kind of hoping that they would maybe ease up a little over summer.

Just been to see my daughter's pediatrician again. She's having really high fevers again and is now refusing to take fever reliever medication. He's kind of thrown his hands up in the air and hasn't really come up with anything, other than vurises. We're going to try steroids tonight. Fingers crossed..

I accidentally came across your messages about fevers and was hoping you could give me more information. My son is 2 1/2 and has been having fevers every 6-8 weeks since he was about 8 mos old. My doctor has just been telling me he has viruses and an active immune system. Is there more to this than that? His fevers usually last 2-4 days, spiking around 103-104. I give him Tylenol and Ibuprofen but it wears off after only 3 hours. He also goes into ketoacidosis (has a very stong alcohol smell). They always occur after we have been busy for a few days- ie visiting relatives, holidays, etc. Is this what you guys are talking about or am I making a mountain out of a molehill? What does FPAPA stand for?

Thanks for your help,
Liz

Our sons ran high fevers on and off...mostly on. He would occassionally have other symptoms. For many months we fought with drs over the fact that our child was sick, not just getting one virus after another. Every abnormality in blood work would produce another theory at what was wrong with him, but after a test for the "disease of the week" proved negative, the assumption would be made that he just had a virus. After many months and many drs, not to mention countless hours of research we saw a dr who just happened to have the right knowledge and our son was diagnosed. Since then, it has been a long road in dealing with other complications, and I still feel like I am having to scream at some of these doctors. But slowly, we are progressing. I am not suggesting that your children have what my son has, but there are hundreds of thousands of people who have rare diseases that go untreated simply because the diseases are so rare that drs either don't know of them or don't think to look for them. In addition, many parts of the CBC's done on my child were IGNORED! why? Because it wasn't common for there to be a problem with certain factors, so they didn't bother to look.

Drs can not be expected to know everything. We as parents have to do our part in things and be persistent, be demanding if you must. Keep a detailed journal of your child's symptoms. Get copies of ALL of their medical records and compare test results yourself and look for consistent abnormalities. Carry copies of medical records with you to drs visits, even if its the same dr. Remind the dr of the past. I found that drs often want to know what's new and unless you remind them that this has been going on "x" months now, they seem to think it is a new illness. If possible, see the same dr every few days while your child is sick.. daily even if thats what it takes. Wake them up to the reality.

And.. one final note.. if motrin isnt helping the fever, avoid it. I found that neither tylenol nor motrin seemed to affect my sons fevers at all, and then we learned motrin was actually a trigger for him. Cool cloths on his forehead and back were helpful to comfort him and in time the fevers broke on their own, though they often got quite high.

Hi all. Just found these boards and thought I would post my experience with my son. C is 4 yr 5 mos and has been experiencing extremely high fevers (up to 106 at one point, but normally between 104-105 during an episode) every 2-3 weeks since 6 months. His tonsills used to become extremely enlarged, so we had those removed. Now, when he gets the fever his lymph nodes in his neck get HUGE. We recently saw a Pediatric Immunologist who diagnosed him with Cyclic Neutropenia. He believed it was that as opposed to Pfba (?) because his fevers respond to antibiotics. If he does not start antibiotics quickly, the fever will continue.

I feel glad that we may finally have some answers, but scared of the road ahead. Also, I keep questioning whether it really is CN as opposed to PFpa. The doctor suggested that we could do CBC's 3x's a week for 6 wks to solidify the diagnosis of CN, but I don't want to put him through that.

thanks for listening and prayers for all - Shelley

Hello,

Our daughter has recurring fevers as well. They last from 3 to 6 days. They will spike quite rapidly, so my wife has become an obsessive temperature taker when our daughter is sick.

Our daughter has not been immunized, which might allay some other parents' concerns over immunizations and recurring fevers. At least in our case, we know the fevers are unrelated to immunizations. We (parents and doctors) have not noticed any canker sores, though it is hard to examine a young toddler's mouth.

She has been a pediatric infectious disease specialist, who is equally as clueless. (To be fair, they ruled out all sorts of possible causes.) M.D.s sometimes attempt to pass a description of symptoms off as a diagnosis, but if pressed, will admit they really don't know what is going on as far as a cause is concerned.

Her febrile episodes come every 2.5 to 4 weeks, though there was one time recently were she was afebrile for 8 or so weeks. Her fever has gotten to 106. She is getting so used to the fevers that if we are able to get the fever down to 102, she is surprisingly cheerful.

You might want to look at this article:

http://www.aafp.org/afp/20030215/tips/25.html

I'll talk to my doctor about colchicine and cimetidine and see what he thinks. Thanks for the tips.

William

Hi. My son has been dealing with periodic fever syndrome since he was 9 or 10 months old. I know how you feel when you don't have a direct answer. I ended up switching doctors until I finally saw a specialist who diagnosed him. He is now just over 3 years old and his episodes have not gotten any better. I am considering demanding a tonsillectomy because I have heard this can dramatically reduce the number of fevers he may get. Anyone with info, please help me with my decision.

Was going through some of the posts here and just wanted to clarify a few points. Periodic Fever Syndrom includes many different types. Below is a very brief outline of some of them.

Genetic disorders
FMF - Familial Medeteranian Fever
HIDS — Hyperimmunoglobulinemia D or Hyper IgD -- caused by a defect in the mevalonate kinase gene.
TRAPS -- Tumor Necrosis Factor Receptor-associated Periodic Syndrome (first described as Hibernian Fever)
Muckle Wells Syndrom

Non genetic disorders
Cyclic Neutropenia
PFAPA -- periodic fever, aphthous ulcers, pharyngitis and adenopathy -- PLEASE NOTE--this diesease is currently a disease of exclusion. There is currently no test to determine PFAPA. All other diseases (including genetic) must be ruled out before a firm diagnosis of PFAPA should be made. All others must be excluded first.

There are more, but these are some of the most common.

My daughter has struggled with high fevers, hostpiatlizations, etc. for 7 years. I too, was told it was just viruses. But I did not give up and I urge all of you not to either. My daughter tested positive for HIDs. Some of these diseases, if not treated appropriately, can cause problems later in life -- again I urge you to push your docs to delve further.

There is a forum for PFAPA parents (they cover other diseases as well) and there is a wealth of info on all the fever disorders there. Go to www.*************.com. Search for the PFAPA forum and sign in. There are numerous articles, resources, etc there.

Dr. Kastner at NIH is recruiting patients to study these diseases. My daughter is being treated by her primary care doc through the direction of Dr. Kastner. All treatments are currently free. Although we have not found something that has helped her -- talking to other parents (many up at 3am and online the same as me) has been one of the greatest helps.

Keep searching for more info -- and always fight for what your gut is telling you.

after all the blood tests etc. We found one of the best docs. in the country...right here in Cleveland. With one look, he said tonsils are coming out. She hasn't had a fever in a year...it was 1 fever every 3 weeks. Steroids worked, but hated to give them so often. She dis get 2 cavities from the fevers draining her.