It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Rare Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 05-09-2010, 01:28 PM   #1
Newbie
(female)
 
Join Date: May 2010
Location: Iowa
Posts: 4
KR1991 HB User
Pfapa Syndrome

I had Pfapa syndrome when I was young, I was one of the first cases diagnosed. From the time I was a year old up to ten years old I was sick one week of every month with high fevers up to 105 F and abdominal pain. I was tried on countless different treatments for years. Finally one very smart doctor tried me on prednisone. And it helped my symptoms!!

I out grew the symptoms of Pfapa eventually, but then started a series of new problems. After the spells of Pfapa left, I began having severe abdominal pain... It is still continuing today. My blood tests, x-rays, everything comes back normal. I am sick almost everyday. Vomiting is frequent, the pain is in my lower stomach and I can barely stand the pain. Feldene masks the pain, but doesn't prevent it. It is causing me to wonder, since a lot about pfapa is pretty unknown, can this be an aftermath of the Pfapa? Has anyone else had health problems after pfapa they could share? Or any ideas? I'll take any questions to help kids with Pfapa as well, I'm no doctor but I can share my story if it would help anyone! Thanks! -K

 
Old 06-10-2010, 12:29 PM   #2
Junior Member
(female)
 
Join Date: Jun 2010
Location: Virginia
Posts: 18
jenna*** HB User
Re: Pfapa Syndrome

I really can't help you with your question, since I just found out my baby was diagnosed with PFAPA today, but I have a question for you.....

My son (18 months now) has not only periodic fever spikes with no apparent cause, but febrile seizures. Every time his temp spikes, he has a full blown full body twitching seizure. The doc said his PFAPA is triggered by puss pockets in his tonsils and a simple tonsillectomy will fix him. I might sound rude here, but everything I've read on this syndrome indicates it won't just go away with a tonsillectomy, although it may lower the frequency.

Considering I have to give my son Valium every time his temp hits 100 to try to prevent a seizure, I'm looking for other options. The doc suggested Prednisone, but I'm wondering if that's the best option. Unfortunately my baby can't talk yet and tell me exactly how he feels, but lately I've found him screaming crying like he's in horrible pain, but I can't find what's wrong. I give him Motrin and it seems to make it better, but I can't just keep my kid drugged up like this all the time.

Running out of options - any ideas?

 
Sponsors Lightbulb
   
Old 06-11-2010, 09:05 AM   #3
Newbie
(female)
 
Join Date: May 2010
Location: Iowa
Posts: 4
KR1991 HB User
Re: Pfapa Syndrome

I'm sorry to hear about your son. I can try to help by telling you what happened with me and my past with Pfapa, but I am sure it is like any sickness in that everyone reacts differently to medication and treatments.

I never had a tonsillectomy, because I could not. I hear it helps in a lot of cases of Pfapa. But one thing to consider is what happened with me. I was sick so often I became anemic, my blood was too thin and I would have lost too much during a surgery. I'm looking now at the small scar on my left arm where they cut me to test my bleeding time. I had this test done twice and both times I was not a candidate for a safe tonsillectomy. Before considering it too much, you might want to have your son's bleeding time checked to see if a surgery would be a safe option for him?

About the Prednisone, it helped me. I was put on the smallest dose possible to keep my fevers under control. Like any steroid you should use the smallest effective dose to prevent the side effects. I took it for years every time I had an episode. Other drugs would help my fever or my pain, but prednisone was the only one that truly made me feel the best I could at the time. It may be something to consider?

My prayers are with your son. I understand how heartbroken you must be as a parent, I watched my parents go through this too. As I got older, I remember the exact day when I thought to myself, pfapa left me, I'm not sick anymore. It really goes away as quickly as it comes. I never believed when doctors said I would just outgrow pfapa. But I did, and I pray that day comes soon for your son! If you need anything please ask. I'm not a doctor but I will try to help any way I can!

 
Old 08-14-2010, 04:35 PM   #4
Newbie
(female)
 
Join Date: Mar 2008
Location: Frisco, TX, USA
Posts: 2
sshermanco HB User
Re: Pfapa Syndrome

what was the doasage you were on? our daugther fevers every 30 days from start to start of fever, but they last 12 days! she is fevering nearly half the month--masked by motrin. did prednisone affect you in any discernable ways? we tried it 2 years ago and it caused extreme moodiness for days. I think we could do a lot less, if we went back to it, but I am not sure how little. thanks.

 
Old 08-18-2010, 10:57 AM   #5
Newbie
(female)
 
Join Date: May 2010
Location: Iowa
Posts: 4
KR1991 HB User
Re: Pfapa Syndrome

They had me on the lowest possible dose that would control my fevers. It took some trials to get the right dose... If they started your daughter out on a dose that seemed to control the fevers, ask if they could lower the dose until you found the lowest possible that worked for her. It's different from person to person.

The only effect I had from it was the puffiness. It can cause you to look a little swollen up if you are on it for an amount of time, but as soon as I stopped using it I lost the few extra pounds look.

It worked wonders for me! I hope it's worth a try for you! Doctors now think all the motrin I took before the pred. caused a problem with the lining of my stomach, so I would really recommend trying something other than motrin to control the fevers! My thoughts are prayers are with you!

 
Old 09-14-2010, 12:37 PM   #6
Newbie
(female)
 
Join Date: Sep 2010
Location: Phoenix, AZ, USA
Posts: 1
chocomom HB User
Re: Pfapa Syndrome

Has anyone heard of a connection of Pfapa Syndrome with a vaccine? My friend's son developed fever and vomiting after his third DTAP, and has had the same happen every 21 days (lasting 3 days each time). He recently turned 4 and was diagnosed with Pfapa. Fortunately, the vomiting appears to be dissipating, but he still has the cyclical fevers. Just wondering if anyone else has heard of (or experienced) that type of connection?

 
Old 02-04-2011, 07:37 AM   #7
Newbie
(female)
 
Join Date: Feb 2011
Location: Minnesota
Posts: 1
tshady HB User
Re: Pfapa Syndrome

Quote:
Originally Posted by jenna*** View Post
I really can't help you with your question, since I just found out my baby was diagnosed with PFAPA today, but I have a question for you.....

My son (18 months now) has not only periodic fever spikes with no apparent cause, but febrile seizures. Every time his temp spikes, he has a full blown full body twitching seizure. The doc said his PFAPA is triggered by puss pockets in his tonsils and a simple tonsillectomy will fix him. I might sound rude here, but everything I've read on this syndrome indicates it won't just go away with a tonsillectomy, although it may lower the frequency.

Considering I have to give my son Valium every time his temp hits 100 to try to prevent a seizure, I'm looking for other options. The doc suggested Prednisone, but I'm wondering if that's the best option. Unfortunately my baby can't talk yet and tell me exactly how he feels, but lately I've found him screaming crying like he's in horrible pain, but I can't find what's wrong. I give him Motrin and it seems to make it better, but I can't just keep my kid drugged up like this all the time.

Running out of options - any ideas?
I am just doing some research regarding PFAPA coming acrossed your post. My 7 1/2 year old son has had PFAPA since 4 months old. We had to make the hard decision to start prednisone when he started school. It has helped him from missing a lot of school. He is still growing normally between episodes. I would suggest to you to see an Infectious Disease pediatric doctor to get good information and direction for your son.

 
The Following User Says Thank You to tshady For This Useful Post:
sshermanco (02-04-2011)
Old 02-04-2011, 01:15 PM   #8
Junior Member
(female)
 
Join Date: Jun 2010
Location: Virginia
Posts: 18
jenna*** HB User
Re: Pfapa Syndrome

Quote:
Originally Posted by tshady View Post
I am just doing some research regarding PFAPA coming acrossed your post. My 7 1/2 year old son has had PFAPA since 4 months old. We had to make the hard decision to start prednisone when he started school. It has helped him from missing a lot of school. He is still growing normally between episodes. I would suggest to you to see an Infectious Disease pediatric doctor to get good information and direction for your son.
Thanks. Actually, my son ended up having his tonsils removed on July 29th and the periodic fevers stopped immediately. We tried the Prednisone, but although they reduced the fevers, it had a side effect of causing them to come closer together. The tonsillectomy was the best decision I could have made for him. He still has seizures when he gets a fever spike, but it's only if he's sick and we have time to get him meds to prevent a seizure. No more unexplained cyclical fevers! Thanks for your help, though!

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Pfapa huntergreen Rare Disorders 16 08-04-2011 01:48 PM
PFAPA -what? walli6 Rare Disorders 48 06-17-2011 12:31 PM
Is it PFAPA or another auto inflammatory disease? Help4Son Rare Disorders 69 06-10-2010 07:33 AM
Possibly PFAPA syndrome? arrowrug Rare Disorders 0 10-18-2009 02:18 PM
PFAPA (Periodic Fever Syndrome) gramstiles Rare Disorders 14 04-23-2008 07:26 AM

Tags
abdominal pain, pfapa syndrome, prednisone, vomiting, weakness



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



robertb (3), Stepper (3), melly88888 (2), cerse (2), ladybud (2), ReeAnn (1), hihopes68 (1), kim simone (1), bladerunner (1), Looly (1)

Site Wide Totals

teteri66 (1180), MSJayhawk (1013), Apollo123 (909), Titchou (856), janewhite1 (823), Gabriel (763), ladybud (755), midwest1 (670), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 03:57 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!