View Full Version : PFAPA or Periodic Fever Syndrome

01-23-2001, 02:09 PM
My 3 year old son has been diagnosed with PFAPA. I would like to talk with anyone who is familiar with this syndrome.

06-06-2007, 06:35 PM
My son was diagnosed with PFAPA over a year ago. He started with very high fevers, and was at the doctor once a month for a year. Every time they told me it was a virus. I finally got fed up and took him to Duke Medical Center, where the infectious disease doctor there finally diagnosed him with PFAPA. He is given prednisolone every time he has a fever. I did some research and in a lot of the research they said that tonsilectomys were successful in more than eighty percent of children with PFAPA had shown no signs of it again. My son just had a tonsilectomy last thursday. They did a pathology report on the tonsils and it showed signs of Bacteroides. I am still looking all of this up, we just found out today. I will try to keep you posted as I get new info.,I am praying that this tonsilectomy works.

06-07-2007, 09:51 AM
wow! how old is your son?? i am anxious to see if the tonsillectomy works. my 2 yr old is experiencing the same thing. monthly high fevers with tonsilitis-always a virus as well. we started the prednisolone yesterday when i mentioned pfapa to the dr.
we have been battling this monthly for well over a year. how did they finally diagnose your son? any advice would be appreciated.

06-09-2007, 09:03 AM
My son was diagnosed with PFAPA over a year ago. He started with very high fevers, and was at the doctor once a month for a year. Every time they told me it was a virus. I finally got fed up and took him to Duke Medical Center, where the infectious disease doctor there finally diagnosed him with PFAPA. He is given prednisolone every time he has a fever. I did some research and in a lot of the research they said that tonsilectomys were successful in more than eighty percent of children with PFAPA had shown no signs of it again. My son just had a tonsilectomy last thursday. They did a pathology report on the tonsils and it showed signs of Bacteroides. I am still looking all of this up, we just found out today. I will try to keep you posted as I get new info.,I am praying that this tonsilectomy works.

06-09-2007, 09:12 AM

After doing extensive research and many doctor's visits, I am 100% positive that my 5 year old daughter has periodic fever syndrome and a tonsillectomy will be the cure. She has had the same symptoms for about 1 1/2 years. It happens every 24 days. Symptoms include fever, vomitting, sore throat, tiredness, chills, no appetite, diarrhea, body aches. These bouts last between 2-3 days. Her doctor suggested she see a specialist and be put under to have a "scope" done. I wasn't thrilled with that idea. We are seeing an ear/nose/and throat doctor this Monday, June 11th. I am also praying that this will be the cure for her. SPIKAR...please keep me posted on your child's condition. I would love to continue corresponding with you. It sounds like we have been going through the same thing. How did you get the doctor to take out your child's tonsills? I am bringing tons of correspondence to our visit on Monday.

06-20-2007, 12:05 AM
My daughter, age 6 was diagnosed today with PFAPA. I hope the steroids work for her. She has missed a lot of school from this. I am just so glad to finally have some clarity on what was making her so ill so often.

06-21-2007, 03:30 PM
Hi, I'm in the Cleveland, OH area. My son was officially diagnosed with PFAPA at 11 months (he's 20 months now). He had been suffering with the fevers since he was 3 months old. I started tracking them on a calendar at 7 months and my (awesome) pediatrician kept great records too. When we finally got to see a specialist (first infectious disease and then rheumatoid), they were ready to take us seriously because of those records.

Some of my son's symptoms (sore throat, mouth sores, terrible breath, skin texture changes) didn't show up until later. Did anyone else experience this?

The doctors tried the prednisone, but it made the fevers come more frequently. He is now on cimetidine (tagamet) and is doing better. It's not cured, though. He still gets a fever, but it is much lower (101 tops, instead of 105-106),it doesn't even last the usual 3 days, and they come 6-8 weeks apart instead of every 4 weeks. The doctors believe the tonsilectomy will take care of it, but my son is really too young for one. I guess they are complicated for toddlers. I was also told he may grow out of it.

PFAPA is pretty scary, especially with an infant! Maybe we all need a support group...

06-22-2007, 09:57 PM
My daughter usually starts with complaining of a sore neck, which is from the swollen lymph nodes, her tonsils get red and very big. She then fevers and vomits, has the mouth sores but they do not seem to cause her pain, she also complains of headaches often.

06-24-2007, 07:53 PM
well, i'm back. my daughter started her fever/sore throat again today. the last time i took her temp. it was 103.6. i started tracking her illnessess exactly 16 months ago. however, she is not consistent with an exact # of days between episodes. at the beginning of the month when she was sick (june 6), we did 2 days of the prednisone. i read that this sometimes helps them get better faster, but shortens the time between episodes. anyone find this to be true??
i guess we will try and get in to the ENT tomorrow. he wanted to see her when she was ill.
would love to keep in touch with the rest of you as to what works, etc.
she hasn't actually been diagnosed with PFAPA, but it's the closest answer to her symptoms..................

06-24-2007, 10:14 PM
Hello, I have a daughter that is 7. Her name is Mackenzie. She has been suffering with high fevers, body aches, sore throats, mood swings(big time), and many behavior changes. She was diagnosed with lyme When she was almost 3. She was on the normal antibiotics a few times and all of her symptoms still remained. The Dr.'s kept telling me that it was nothing to do with the Lyme. I on the other hand did not believe that. I found a ped. lyme specialist in Conn. He tested her and said she still had active lyme. 3 and a half years ago he diagnosed her with Babesia. In between this her primary sent me to a infectious disease spec. She said it was PFAPA. The lyme Dr. treated her for an entire year with Mepron and Zithromax. ALL of her symptoms were gone during this time. When she stopped the meds all of the symptoms came back.
She now went to a ENT specialist and he believes it is her tonsils. I am so confused. he wants to take them out. I am unsure of what to do. Iwould hate to have her go through the surgery if that is not the problem. Does anyone have any input? Please help, It has been almost 5 years of going through this. Thank You Tina

06-25-2007, 06:34 PM
well, we saw the pediatrician today and he seems to think we are dealing with PFAPA also. in the past, all the dr (it's a large practice) she saw believed it to be a virus, just a case of her being two........
we have an appt. with an ENT on thurs.
i'd be willing to consider taking her tonsils out if they believed that would "cure" her....
i'll let you know what he says.

06-25-2007, 09:24 PM
I know before I took my daughter to the infectious disease spec, her primary doc was thinking it was time to remove her tonsils. She never mentioned PFAPA, I had never heard of it until the infectious disease doc told me and she matches that to the letter. I will not have her tonsils removed until I am positive that would be beneficial to her. I hear it works for a lot of PFAPA kids.

06-29-2007, 03:29 PM
did the pred work?

well, i'm back. my daughter started her fever/sore throat again today. the last time i took her temp. it was 103.6. i started tracking her illnessess exactly 16 months ago. however, she is not consistent with an exact # of days between episodes. at the beginning of the month when she was sick (june 6), we did 2 days of the prednisone. i read that this sometimes helps them get better faster, but shortens the time between episodes. anyone find this to be true??
i guess we will try and get in to the ENT tomorrow. he wanted to see her when she was ill.
would love to keep in touch with the rest of you as to what works, etc.
she hasn't actually been diagnosed with PFAPA, but it's the closest answer to her symptoms..................

07-03-2007, 09:43 AM
YES! i was trying not to give her the pred. this time around. i wanted to let the ENT look at her throat during an episode. however, before bed, her fever had spiked again to 104.5, she still hadn't eaten (because of her inflammed tonsils) and i gave in. i gave her the 3/4 teaspoon. within an hour, her fever broke and she was eating normally the next day. the ENT saw NO signs of tonsilitis 2 days later. so...........he doesn't seem to think it's viral, but had never heard of PFAPA.
we are going to just keep tracking her episodes and the frequency. however, the pred. DOES seem to stop it in the tracks. i don't want her to be on steroids forever, but 3/4 tsp. is really not that much. :)

07-03-2007, 11:05 PM
Thats good that it worked and worked fast. Did it make your child really hungry or aggressive at all?

07-05-2007, 06:27 PM
Did not notice any change in appetite or aggression...............

07-24-2007, 06:45 PM
My son had PFAPA from July 2001 until July 2003. I just recently discovered that it was PFAPA by stumbling on a web site with the symptoms. He was a classic case. Recurring high fevers 104-106 that lasted 5 days every 25 days, mouth sores, etc. He was fine in between episodes, and his only real symptom was the fevers.

He was hospitalized 2 times for 2 weeks, saw infectious disease specialists, etc. and all they would tell us is that he just had a virus. The fevers became more intense, and motrin would not bring it down below 103 before the next fever would hit. In the end we were giving him motrin and a tylenol suppository at the same time, and it still would only bring it down to 102. Our pediatrician and ENT were getting very concerned, and they decided that we needed to do something. Although his tonsils never presented as a significant problem, they decided to try removing them.

My ENT actually called me the 2 days before the operation was scheduled and said that he had been at a conference and discussed my son's case, and he was very concerned that we could lose him in surgery. My son was only 2 1/2, and his main concern was that we woulld not be able to coax him to drink because he was so young, and even under the best circumstances a tonsillectomy causes a fever..and with my son being prone to such high fevers he wanted to hold off and let him get a little older. He said that every month we could go would help in his ability to understand that he needed to drink. So, we waited another 2 months, but then we got to the point where the doctors felt we had no other choice. When the doctor came out after the surgery, he was disappointed because the tonsils did not "present" as being the cause of his illness. They ran tests on them, and did not find anything notable. He was in the hospital for 1 week, but HE HAS NOT HAD A FEVER SINCE! He just turned 7 years old and has been free of the syndrome for 4 years. So those of you that are considering the surgery, it worked for us! ;)


08-04-2007, 08:29 PM
WOW!! that's great news to hear. our ENT does not think we should do surgery at this time, but he will consider it if we (our pediatrician and ourselves) really want to.......????
i am probably going to jinx myself by writing this, but we haven't had an episode since june 25th! :)

i'm keeping my fingers crossed we may be outgrowing it!

08-08-2007, 07:53 PM
Hello to all. We went to the rheumatologist today for the 4th time in year and were diagnosed with PFAPA. Our daughter is 2 and has had fevers basically since she was 6 months old. She has episodes every 2 to 3 weeks and runs fever for 4 or 5 days. Her fever has never been higher than 103. To make matters more complicated she was diagnosed with chronic benign neutrapenia when she was 8 months old. Her fevers continued and we begin looking for answers over a year ago. We had a complete “work-up” by the immunologist last fall and they came up with nothing. We also saw a cardiologist for Kawaski disease and that was negative and then begin with the rheumatologist. Over the past year her health continued to get worse. We have had her tested for everything under the sun including cystic fibrosis. This past May they did a bone marrow aspiration because of her neutrapenia and fevers and changed her diagnoses to autoimmune neutrapenia. We have been treating her with twice a week injections of neupagen to stimulate her bone marrow. It has worked wonders for her immune system but she still continued to have the fevers. So…..that’s when the decided the fever and the neutrapenia were not related and we began looking for other causes of the fever and that is how we got our PFAPA diagnoses today.
We have been very frustrated with all of this and it is so hard to watch your baby go through all of this. Our doctor is recommending taking Cimetidine daily and having her tonsils and adenoids removed. Our daughter has had ear tubes put in 3 times and we are trying to make a decision on doing them again for the 4th time. I was wondering if anyone else is using this medication? And have they had the tonsils and adenoids removed?

Can’t wait to hear from someone!!!

08-10-2007, 09:08 AM
hi katie
it's so frusterating, isn't it?
i have only treated my daughter with the prednisonole. That seemed to work great for her. All symptoms are gone within an hour of her first dose (3/4 tsp).
I have heard great success stories with tonsil removal. We are still going to monitor her for a couple more months before we make that decision. We haven't had a fever since the end of june! :)

good luck and keep me posted

08-12-2007, 03:49 PM
:) I am so glad to finally talk to other parents with this I have been so emotionally drained for 6 months now I just want to cry on someones shoulder.My son is 15 months he was hospitalized at 10 months and had every test under the sun all I was told is that he had a couple viruses that caused him to be very sick with elevated labs. got out of the hosp and every month i would take him to the peditrician and they would say its a virus but I will give you an antibx just in case its bacterial. three months later his fever spikes so high so fast he has a seizure and is in the hosp again. we go to the infectious disease at duke univ and he was dx as pfapa and given pred. He had a fever July 30 we gave him the pred and now 13 days later he is runing another fever. so we had no choice but to give him pred again just because motrin and tylenol does not work. I had to start rotating it every 2 hours instead of 3 and it still spiked. how soon did your son's fever return when you started the pred.

08-12-2007, 04:15 PM
who did you see at Duke We saw Dr Ross Mckinney. He the dr that gave us the pred we saw a spec in charlotte at levine childrens hosp who said no to steroids and a spec at winston salem who said yeah try the steroids. I just have so many questions to ask. Has your child had a febrile seizure??

08-25-2007, 08:48 AM
well, i guess i jinxed myself with my last post. my daughter had 2 episodes this month. the 11th and the 23. the 1 dose of pred. worked great on the
11th, but had to take 2 doses this past week. we see a new ENT on tuesday to discuss tonsil removal. i think we've hit our limit on dealing with this illness and the stats say a huge number of kids don't suffer after their tonsillectomy.
ANYONE?? have a success story to share???

08-30-2007, 12:04 PM
HELP!!! I have no clue what my three year old son has. This is his third time having fevers. There are no other symptoms. He seems to get them at the end of each month. They are all similiar. They last 6 days with fevers up to 104.5. I have to give him mortin around the clock. When the mortin works..he is fine. Right at 5 hours after having mortin he starts to get a fever. My daughter who is one...never gets sick. She even used his toothbrush. If it was a virus...I am sure she would have been sick by now. The doctors insists it is a virus and each fever is not related. Needless to say...I didn't believe them! They did take blood yesterday to determine his Ig levels. When they call with the results...what am I looking for? What needs to be elevated to be considered PFAPA syndrome. Who do I see next (immunologist or infectious disease doctor)?
Thank you,


09-01-2007, 07:38 PM
Have your doctor contact a local immunologist or Infectious Disease doctor who is familiar with PFAPA or any of the Periodic Fever Syndromes. Our son had the same symptoms for about 2 1/2 years. He was on colchicine for a while, but now, after everything, he only has those febrile episodes every six months or so, and while they can be rather high (last one was 103.5), the duration isonly a day or two. Then he just "snaps out of it." Good luck and keep in touch!

09-03-2007, 09:05 AM
to 35sooz-
wow, it sounds like exactly what we've all been dealing with for months now.
i finally switched pediatricians because i was tired of them labeling everything as a "virus". my daughter started fevering at 11 months. her highest fever was 105.6-most episodes lasted 3-5 days and were accompanied with extremely inflammed tonsils.
after 6 months we did extensive bloodwork which did not recover much other than an elevated SED rate.
she is now 30 months and we are probably going to schedule her tonsillectomy for october.
unfortunately with PFAPA, there really isn't a firm diagnosis, just a "ruling out" of everything else. the prednisone worked wonders when we tried it for the first time in june. her fever and other symptoms were relieved within 2 hours. she then was fever free for the whole month of july!! however, she suffered 3 episodes in august. (because of the prednisone, only lasted 1-2 days each time)
good luck researching this crazy illness, and keep us posted.

09-03-2007, 09:42 AM
I am very worried about the fate of our children. I am worried these are all cases of lyme. especially because of the cycling. if it can't be eradicated even with years of antibiotic, what r we gonna do?

09-04-2007, 03:48 PM
After all the other tests are done to rule out Lyme (western blot AND ELISA), the only way left to conirm the presence of Lyme's is a lumbar puncture. You may want to discuss this with your immonulogist.

09-05-2007, 07:59 AM
lumbar puncture is a very invasive test, and has a lot of false negatives. blood tests have a lot of false negatives too. doctors are supposed to treat based on symptoms, even the IDSA recommends clinical diagnosis and says the tests should not be used as a basis to not treat in cases of clinical symptoms. too many doctors are not taking this advice, they don't understand.

09-05-2007, 05:25 PM

I asked the doctor if they checked his SED rates. Her response was no. Do I need to check this rate when he is having the fevers OR can I check it now? I made an ENT appointment for Oct. and I need all my facts straight before I go. I will do anything to prevent him from dealing with this. I contacted an infectious disease doctor. He NEVER heard of this syndrome and told me I am probably misspelling PFAPA syndrome. Needless to say...I am not going to see him. How rare is this syndrome? I feel like doctors think I am crazy.


09-05-2007, 07:53 PM
to katiebug05 Or anyone else who can answer-

How long did it take for Cimetidine to work? Did you see the fevers go away immediately or did it take a few hours/days/months? I am going to an ENT, but what do I saw to convince the ENT that he has this syndrome? The doctors think it is always a virus. All lab results came back normal. They can't find anything. I am creating a file of proof to take to the doctors...including calendar of dates and information of PFAPA syndrome. Any other information would be great.


09-05-2007, 09:06 PM
hi suzie-
one course of bloodwork included a CBC, sed rate, rheumatoid factor, CRP and ANA panel.(??) I'm just looking at her records now, but can't quite decipher much. I do know that the first time I got all these tests done, the sed rate and rheumatoid factor were elevated (not sure of the numbers) and her pediatrician wanted her to see a rheumatologist. her records were sent over to them and their office reviewed them. at that time, they (rheumatologist) wanted to refer her to an infectious disease dr.
her pediatrician didn't agree with this (etc. etc. etc.) and in the meantime i was patiently waiting for a appt. (the soonest i could get in was 2 months away!) well, i truly believed at this point she was dealing more with PFAPA and not something else, so i demanded her bloodwork be redone. at that time, all her numbers came up perfectly fine. so........the appt. was cancelled. i then realized she had done the initial bloodwork very shortly AFTER an episode, which is why i think her numbers were skewed... so, i would advise to get the bloodwork done between episodes.-when your child is perfectly fine.

i'm not sure how common PFAPA is....the more research i do, the more common i think it is.
don't give up....go to every appt. armed with info. and your child's records for proof of timing of episodes. 2 different ENT's i saw were not familiar with PFAPA... however, with my pediatrician's support, we got them to do some research and agree a tonsillectomy may be our best bet.
i'm not running to get this surgery done, but at this time i feel the fevers aren't going away. so, i have to try something-anything!! it's so unfortunate that the kids have to suffer through this every month. my daughter missed her 1st bday, 1st day of preschool, etc. etc. and it's just not fair.
let me know anything you find out.

09-10-2007, 07:56 PM
My son is now 7 months old and on July 12 he started running a high fever. Since then we have been at the doctors office a total of 5 different times w/the same symptoms--fever, fussiness, and decreased appetite. There is no other indicator of infection or a virus visible. However, when he had his blood work done they said his WBC count was high on 3 or 4 of the occassions and on 2 he had a high C-Reactive Protein result. The blood cultures have shown nothing bacterial. Has anyone that has a child w/ this syndrome had test results with a high White blood cell count? They mentioned this and a immune deficiency.

09-12-2007, 06:43 PM
has anyone tried singulair as a treatment??

09-13-2007, 08:11 PM

I am new here. I hope to God this isn't what my son has as it sounds very difficult to deal with! My son is 19 months old and has had 3 fevers in 3 months - all exactly 28 days apart and all wtih no symptoms besides the fever. The first fever was 104.6 - dr's said virus. It was gone the next morning. The next fever was 103 and lasted 3 days. No other symptoms. The next was a few days ago, got to 103.8 during the day. Again, no other signs of illness - just the fever. They are doing a CBC with differential to rule out something more serious like cancer tomorrow. They checked for UTI - negative. I just pray he doesn't get a fever in October! I have it marked 28 days from now and I pray that these 3 mos of fevers are just a coincidence. The Dr's are confused. They know NOTHING.


09-18-2007, 10:33 AM
WOW! I cannot believe how many other parents have children with this syndrome! One year ago, when my son was 7 years old, he got a very high fever for 5 days. Doctors tested him for strep - negative; CBC showed slightly elevated white blood count, so they assumed an infection and put him on a round of antibiotics. He got better, but never determined why he was sick. For the next year, I tracked him getting sick with a fever every 6-8 weeks. The fevers would always spike to 103.5-104 degrees, the only symptoms being headaches and achy all over/tired. When we went to the pediatrician for his annual check up, I showed him all the times he had had fevers, as we had not always gone to the Dr. He was shocked. He immediately ran a series of blood tests through Children's Hospital in Knoxville, TN (where we live - thank G'd!). All looked normal. He suggested we talk to a Pediatric Infectious Disease doctor anyway to see what she said. Well, 3 days before her appointment, he got another fever. The Pediatrician immediately sent us to the Chidren's Hospital for more blood work. This time, it showed inflammation in the body. By the time we got to the specialist, the episode was gone.
Yesterday, he had another episode (they are now up to 3 weeks apart) and saw the Infectious disease Dr within hours and she saw sores in his mouth (1st time we saw that), swollen lymph nodes and pink throat. She had guessed before he probably had PFAFA, but now she is certain. We started him on steroids (prednisone) immediately and will see how it goes.
Since he is older starting this (not a toddler), we are not sure how long it will last during his life. I am going to track everything to see what patterns emerge.
Thank you for writing about your children! I wanted to cry, as no one else around me knows what I am talking about! I am not making this up!
from, Thomas' Mom

09-18-2007, 10:36 AM
I would try to see an infectious disease Dr and mention PFAFA. I hate to hear of such a small child starting steroids, but they might need that to help. Keep track of everything - when fevers occur, how high, ANY other symptoms, etc, so the Dr knows what they are dealing with. Good luck!

09-20-2007, 09:41 PM
After 8 months of fevers every three weeks, we finally got somewhere by going to Children's Hospital of Philadelphia - - specialist there is 95 percent sure that my daugther has Periodic Fever Syndrome - - we are having bloodwork done this week - - my advice is to keep track of your child's symptoms on a calendar and go see a pediatric specialist - - good luck to you and your child - - I am so grateful to have found this board - - there is lots of good advice on it

09-30-2007, 11:49 AM
Dear members of Hboards,

I am writing from Bosnia and I found this site on ******. I have a daughter who is suffering a lot of PFAPA. She is two years and five months old and sick from the very first month. Until now we spent approx. 100 days in
hospital getting strong antibiotics for her sore throat. She had it all, aphthous stomatits, pharingytis, and most frequently Angina Lacunaris – swollen and red tonsils. Her microbiological tests are all negative. She always gets a very high fever, 40 Celsius or 40, 5. Paracethamol and other medicines for fever do not help. Finally we were told and sent from our hospital to Belgrade where we found Immunologist in the Institute for mother and child’s care. We started to use steroid therapy (pronizon-prednisolone) in June 2007 and since than she had 13 febrile episodes. Finally her febrile episodes were one week apart. We ended up in the hospital again. Now I am waiting and praying God to postpone fever at least for one month. We consider as an option tonsillectomy but our ENT doctor says that her weight is too low for that procedure. She weighs 12 kg. I hope and pray for my daughter, PFAPA is very exhausting and hard for child and parents.
I appreciate any comment.

10-02-2007, 05:41 PM
Hi all--I'm a newbie on this site--trying to figure out what is going on inside my 3 1/2 yr old son's body. He has been having episodic fevers (103-105) for months...for a while 2-3 wks apart but w/out any course of treatment...just went almost 8 wks...now we're at end of 3rd day and he's bad again. Mouth sores, pain all over, esp. headache (forehead), tummy pain, diarrhea, even hallucinations...we've been to all sorts of specialists...ent, allergist, rhuematologist and gastroenterlogist...(pls forgive my spelling)...run all sorts of blood tests..both when in episode and not...not much showing up...i feel so helpless...it seems to be the worse this time...i've been reading most of what's posted..just found site today. Someone asked a question about child's irritability or aggressiveness..has anyone experienced that in their child?..minor but wondering if related...because i've seen his behavior change a bit this last month or so. Haven't mentioned this PFAPA yet to Dr..but will in morning...anyone else out there have a child w/some or all of these symptoms?...welcome any and all responses--thank you

10-09-2007, 09:05 PM
RAVENS MOM Hi my son was diagnosed with PFAPA about a week ago.He has been in & out of hospitals & doctors offices since he was 2 months old .Every time his white blood cell count was elevated but noone could ever figure out where the "infection" was coming from.His attacks are every 2-4 weeks with temps. ranging from 102-106.I don'tmuch about the syndrome but, I figured I should let you know your child isn't the only one with the elevated wbc count.

10-09-2007, 09:19 PM
I came on this sight hoping to find some answers.My 5 month old has had fever attacks since he was 2 months old.We were wondering if anyones child started out with just the fevers.If so did other symptoms occur over time (sore throat,sores in the mouth,swollen lymph nodes,etc.)or is it possible our son may only be effected by the fevers? His temps range from 102-106 & his attacks are every 2-4 weeks apart.With so many symptoms that come with this syndrome how do you know when it's an attack or something else?I might as well put my cott up @ the hospital & docs office.Does this make everyone crazy or is it just me?

10-11-2007, 08:59 PM
Some families are curious to hear from other families about growing out of PFAPA. Well my daugher just turned 13 years old, and just had another bout on her 13th birthday.

From the time she was 9 months old I was told that 'some kids
just have fevers'. It was so unbelievably frustrating and my
pediatricians at the time were one of the best in Atlanta so being
a first time Mom, I believed it. It wasn't until the fevers became
more frequent and more cyclical that I pressed further and just
couldn't accept their `answer' anymore. I ended up leaving Atlanta and
moved to Sarasota, FL and found an incredible pediatric practice that
actually listened to me. I ended up seeing several specialists and
ended up at All Children's Hospital in St. Petersburg, Florida.
After grueling bloodwork and numerous tests (they thought she had
cyclic neutropenia and Mediteranean fever) but after ruling everything
else out, she finally had a diagnosis . . . PFAPA! Her fevers came
every 3 weeks and were steady for many years. We would plan our
holidays, vacations, leisure time around those calendar days. I could
tell when the episodes were coming on, her whole complexion would
become extremely pale, almost ghostlike and she would be extremely
irritable. Within 24 hours of those symptoms PFAPA would arrive with
temps skyrocketing to 105 degrees. If untreated they would last about
4 or 5 days then disappear as quickly as it came. The other symptoms
that would present were mouth sores, pharyingitis and stomatitis The
only drug that has ever worked is Prednisone . . . within one hour of
taking it, she would almost be back to normal. As she approached
pre-puberty years, the fevers came less and less frequently and
were further and further apart until they didn't come back after the
summer of 2004. In April of 2005, she started up again and had about 4
episodes in a year since. Her last one was a year ago until 2 days
ago. We really felt as though we were out of the woods because we were
told that they would go away once she reached puberty. Now that she is
going through the mid stages of puberty, and we are still dealing iwth
it. We are considering a tonscillectomy to see if that stops
it from coming back.

10-11-2007, 09:47 PM
Was wondering if you had ever heard of any other children growing out of it any faster? Your story breaks my heart. Knowing kids can be effected by this for that long, & there is no cure. :mad: :mad:

10-12-2007, 05:42 AM
I don't know personally of anyone that has outgrown it any faster, although we thought we were done. Unfortunately that was not the case. Also, I do know of 2 others, one of which is 16 and the other 21 that still deals with it. :(

10-12-2007, 10:41 AM
We were under the impression if it was long term it was more likely to be Hyper IgD syndrome. That is were there is a broken protien in the body that tells the immune system there is an infection when there isn't. The body fights the infection that isn't really there which causes of course high temps & lasts life long. If PFAPA does last that long I've got a long ways to go before this is over. You might let people know about the Hyper IgD syndrome, it CAN be tested for.

10-14-2007, 01:45 PM
She's been tested for HIDS and it was negative, plus she presents with the other symptoms of PFAPA, cyclic, I could set a calendar to it in her early years.

We are going back to the specialists in St. Pete and I'll keep you posted on the prognosis and that consultation.

10-18-2007, 10:07 PM
My daughter is going to be tested for PFS tomorrow. She is 2 1/2 and has been getting fevers for the past year. Her Ped said it was a virus after the first couple of episodes. They did a CBC diff because I was worried about Leukemia. The test came back normal. She had several more months of episodes and I decided to take her back. They checked her urine and it came back normal. I was concerned with the viral diagnoses since the fevers occur monthly and my other children are not affected. I brought her back this month and the ped said that some kids get fevers and she will outgrow them. Hopefully that is the case, but not an accurate diagnosis. Finally, after I pleaded and shed some tears they ordered extensive blood tests. Her CRP came back elevated. They will be testing for PFS and she will be getting a chest X-RAY and bone scan as well.
Her fevers also are cyclic, they begin around the 6th of every month and last 3-4 days. Usually during the day she is playing with her siblings, then around 5-6 PM she starts getting her fever back. She doesn't have an appetite during these episodes. I have read where many children have mouth sores, my daughter is not experiencing those. I also read where a couple of people found the fevers were on the same cycle as the mothers menstrual cycle. I will check to see if that is the case for us.
Any advice would be appreciated as we are in the diagnosing stage.
Thank You!

10-19-2007, 07:53 AM
My daughter was "diagnosed" with PFAPA this past summer-after fevering monthly since Feb. 06. We did all the bloodwork, scans, etc. and basically they ruled everything else out. We have a T & A scheduled for this upcoming Monday (the 22nd). We are praying that this will help. Along with the monthly fevers, she also has extremely swollen tonsils, etc. Just recently did the mouth sores start. Although prednisone works great to get rid of all symptoms, her fevers started coming more often.
I'll keep you all posted.