Anyone's kids have PFAPA aka periodic fever syndrome?

Discussion in 'Family Life - Stories, Pictures & Updates' started by sangel4you, Jan 17, 2010.

  1. sangel4you

    sangel4you Chillin' With My Peeps

    831
    0
    139
    Apr 11, 2009
    Halifax, Pennsylvania
    Title says it all. DS was diagnosed about a month ago, has had these fevers for 2 years and his temp is high tonight but he actually isn't acting sick yet. This is the first one since diagnosis and we are going to start with 2mg of prednisone and see if that does anything. Just looking for people with some experience since it's kind of a rare condition.
     
  2. onedoodle3

    onedoodle3 Chillin' With My Peeps

    I have never heard of it. However, my son (now 16) ran high fevers from the time he was born until he was about 8 years old. He would run these and not have anything else wrong. The highest was 106 and he was rushed to the ER and put under cooling blankets. The doctor told me he would have brain damage due to the severity of the fever, but he came out just fine. His pediatrician was stumped. She could not figure out why he would run these. They scared me to death. Luckily my daughter (now 6) has not had them....well, when she gets a cold or something, she runs one but rarely over 103. My son's ran 103 to 106. The only explaination his doc could give was that maybe his normal body temperature was not "normal", that maybe his normal temp was at least 100 and not 98.6.

    Hope your little one does ok.
     
  3. sangel4you

    sangel4you Chillin' With My Peeps

    831
    0
    139
    Apr 11, 2009
    Halifax, Pennsylvania
    That's actually what my pediatrician said too. Maybe he just has a high fever center. But then after he counted the occurances in the past year and a half he was like "ok let's do some labs" then that turned into "ok, I have a friend who is a brilliant researcher and specializes with kids, I want you to take JAckson to see him" went, and he dx him with this PFAPA. Apparently it's not too common, but it's also been discovered more in the last few years so that could be why your son was never dx. I'm glad to hear he outgrew them, I think it depends on what type if they outgrow them and I really hope my DS does! He misses SO MUCH school and I am in college when he is at school so home schooling is not even an option. Plus I'm a bad teacher and wouldnt be able to do that. My DS is luckily is brilliant would end up teaching me I think. Glad to hear at least there's someone here on a more familiar board who has had some sort of this type of experience! And thanks!
     
  4. sangel4you

    sangel4you Chillin' With My Peeps

    831
    0
    139
    Apr 11, 2009
    Halifax, Pennsylvania
    ohhhhhhhhh [​IMG] TWO DAYS off the steroid and it's BACCCCK already! I can't believe it! We are all so tired and he is SO miserable feeling not to mention NO sleep for anyone and I have a CRAZY school schedule this week and am getting no studying done and won't be arond much at all this week to care for him! Can't wait to call Dr tmrw am and see what he says! This is insane! reoihgoijvhd g93[n9qytiheogi PFAPA! grrrrowuru]24rkwoefoiwe GAH! Ok thanks for letting me get that frusteration out! BAck to attempting to study and catch vommit and lower a fever all at once. Yay. Can't wait to go to clinical all week and do more of the same with other kids. yessss. that's exciting right there. Sorry all, I'm not a peds nurse. Just for my son.
     
  5. onedoodle3

    onedoodle3 Chillin' With My Peeps

    Awww....I'm sorry he's so sick. I hate to say it but the doc my son had didn't seem to really be interested in finding out why my son was having so many fevers. She would just say "give tylenol and 4 hours later, give motrin. Keep alternating until it is gone." He missed 28 days of school one year and I had to go before the school board with his medical records to PROVE he was sick. They thought I was just keeping him out of school. Am now going thru the same thing with my 6 year old daughter (the school fight, not the fevers) all due to her asthma and allergies. I follow their stupid rules and they are trying to take me to court. Their rules state: If a student is vomiting and has vomited at any time in the preceding 24 hours, he/she cannot go to school until they are vomit free for 24 hours. (confusing, huh), If a student is running a fever of 100 degrees or more, he/she cannot go to school until they are fever free for 24 hours. Well, my daughter's allergies and asthma cause her to run a low fever (100-101) and she has so much drainage during the night, she throws up 5 to 8 times during the morning to get all the mess out of her stomach. She's was on Singulair 5 mg but her doc said to give her 1 1/2 tablets to see if that would help. It has done great!

    I think it is fantastic that your son was dx'ed. I wish I had pushed more to get my son tested more than he was. They ran all kinds of blood work and chest x-rays on him and found nothing. I was kinda made to feel like it was all in my head and I was making it up (except I took him to the doc everytime he got one above 103). Now I can tell my mother and the other people that were saying I was just making it up and keeping him home for no reason what the problem was. I now feel vindicated. Thank you for that. You don't know how great it makes me feel. I'm just sorry your little one had to go thru so much before he was dx'ed with it.

    I hope he gets better soon, for his sake and yours.
     
    Last edited: Jan 24, 2010
  6. vstoltzfus

    vstoltzfus Chillin' With My Peeps

    199
    2
    111
    Aug 10, 2009
    Lancaster County, PA
    So sorry to hear about your son. My friend's daughter has that. Every 6 weeks she spikes a 105 fever. Her doctors were stumped as to the cause so slapped the PFAPA diagnosis on her. My friend is at her wits end. Good luck to you.
     
  7. sangel4you

    sangel4you Chillin' With My Peeps

    831
    0
    139
    Apr 11, 2009
    Halifax, Pennsylvania
    It IS awful the way they make you feel! And I'm glad I could help you feel it was a REAL problem! SAme thing happened with my son (missed 22 days last year between nov and april) but luckily they took the doctors notes etc. Not anytime he has a fever I call the office and have them fax a note immediately so I don't have to deal with it. And our school regulations are the same way. Like he can have a 102 fever bc of this disorder and feel FINE but if a teacher touches him and feels his skin off to the nurse he goes and of course he's sent home. It makes him mad because there are days he has fevers over 100 that he is able to function and feel ok but isn't allowed in school. I have half a mind to bring the research in so they can see he's NOT contageous and tell them they have to let him come to school! Lol Missed his thanksgiving party last year, a feild trip, and the whole last week of school. This year he missed the first day of school and their Christmas party. Poor kid misses all the good stuff! You should look it up so you can tell your family etc about the fact that you werent making it up! It's called periodic fever syndrome and the branch they THINK DS has is PFAPA. I'm sorry you're daughter is having issues now too, and I hope things will improve for her! MY best wishes and thank you for hearing me out! Sometimes I just need to vent to someone who gets it instead of other parents who are just like "oh he's sick again?!" And I know in their minds they're going 'really?!... honestly sick? Doubt it, you probably just baby him' so I don't even bother talking about it to other moms or my friends anymore because they dont get it.But then I love how if they're kid hits 104 they think it's the end of the world! HA HA MY kid runs 104.6 with both motrin AND tylenol in his system, they don't even WANT to know the numbers before the meds! Anyway, thanks again! :)
     
  8. sangel4you

    sangel4you Chillin' With My Peeps

    831
    0
    139
    Apr 11, 2009
    Halifax, Pennsylvania
    Quote:Do you know where she goes to have her seen? My son was diagnosed by Dr. Varma at Harrisburg, but he is now talking about sending us to Hershey to having testing done by a pediatric rheumatologist to determine what type. Dr Varma is actually seeing us probono as he doesn't take my insurance but my son's regular pediatrician is friends with him and called him up after his last prior episode and was like "look, I've got this kid who has this, this, and this, and I am stumped. Can you see him for me- you're more into the rare and researchables than I am" So he did and he is VERY knowledgeable! Our regular pediatrician told us prior to us meeting Dr Varma "he's awesome...like a wizard- seriously intelligent" and of course that made DS very happy to hear :) How old is her daughter? I don't know if it would be worth the drive but I would recommend your friend to Dr Varma. It's worth a shot. He's got us trying the steroids for now until we see the rheumatologist if it comes down to that. If she wants, I would be glad to exchange emails or whatever...it's REALLY nice having someone to talk to when these things go on...the episodes wear parents down just as much as the kids! Let me know!
     
  9. onedoodle3

    onedoodle3 Chillin' With My Peeps

    I know what you mean about other people thinking you're "babying" him. That is the attitude I got from some of my friends and from my parents. I will research it and print it out. My mother doesn't believe anything unless she can see proof. She's kinda annoying that way! [​IMG]

    As for the venting...anytime! [​IMG] It IS nice to talk to someone who actually understands and isn't just 1/2 listening to you with glazed eyes. [​IMG]

    Keep me posted on how your son is. If I don't post for a few days, my schedule has changed. I work a rotating schedule every week. Ahhhh....shift work! [​IMG]

    good luck!!!
     
  10. sangel4you

    sangel4you Chillin' With My Peeps

    831
    0
    139
    Apr 11, 2009
    Halifax, Pennsylvania
    I too have a rotating shift both at work AND with clinicals at school. Mine changes every few days, not every week like some people! agh! And thanks again, I really appreciate it! I will keep you updated!
     

BackYard Chickens is proudly sponsored by