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Old 01-23-2001, 01:04 PM   #1
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Post PFAPA or Periodic Fever Syndrome

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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Old 01-27-2001, 12:46 PM   #2
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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.

 
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Old 01-29-2001, 09:39 PM   #3
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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.



 
Old 02-01-2001, 04:45 PM   #4
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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.



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Old 02-02-2001, 12:12 AM   #5
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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.


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laney2377 (06-05-2012)
Old 02-17-2001, 05:59 PM   #6
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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.


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Old 02-19-2001, 08:07 AM   #7
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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

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Old 02-19-2001, 10:11 AM   #8
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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


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Old 03-04-2001, 12:21 AM   #9
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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.

 
Old 04-23-2001, 03:28 PM   #10
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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.


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Old 07-25-2001, 05:49 AM   #11
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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.

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Old 03-03-2002, 06:56 AM   #12
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HI 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???

 
Old 03-26-2002, 03:19 PM   #13
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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!

 
Old 04-10-2002, 12:23 PM   #14
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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.

 
Old 05-01-2002, 08:28 AM   #15
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Sheryl Lagge HB User
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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
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