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PFAPA

GinEthansMomGinEthansMom
in Special Needs

Hi ladies,

In addition to some of the recent posts made concerning my son's behavior, I neglected to mention that he's been plagued by recurring fevers since he was about one.  Now at 3 1/2 the fevers come about every six weeks.  We had a break for a few months and now in the last 10 weeks he's had three fevers.  They come on with very little notice, race upwards of 103 degrees, last for a few days and leave us in the wreckage.  He's healthy between episodes.

I had DH take him to the pedi yesterday as it was my first day back at work and for some reason Dad taking the kiddo seemed to make our pedi take us seriously and he ordered tests for PFAPA.  He felt reasonably sure it was PFAPA, why he waited two years to order tests, i don't know.  I have been in about a dozen times with my poor bub for fevers with no other symptoms than swollen glands, aches, and a crabby disposition--always to be sent home saying it was a normal virus.

Anyone know much about PFAPA?  All I find online is a basic description.  Not a whole lot of info.  Would like to know if any moms on this board have any experience.

I never connected the recurring fevers with our behavior challenges and maybe there isn't a link but now I wonder?

Still looking into the other suggestions such as Aspbergers.  So far there are some things that lead me to believe that's not it but I'm still digging.

THank you for helping us!

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Re: PFAPA

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    GinEthansMomGinEthansMom
    Yes, they are looking at Mediterranean Fever.  Pedi says it's a stretch but still wants to rule it out.
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    MummyGruetzieMummyGruetzie member

    are you seeing an immunologist or hematologist? DD has recurring infections and slightly off blood counts on the standard blood test. When we went to the hematologist they did a different test that showed a more pronounced immunodeficienc, which makes her more susceptible to infections. They want to do IV/IG or subcutaneous IG treatments to help prevent them. We have an appt scheduled with an immunologist this month to see what they think about the IG treatments and to have them run some other tests.

    Also. I think I caught from Auntie's post that DS may be from China (?). Sorry-- I think I missed your other posts. . .  If you adopted him (we're in the process with DD), there are adoption centers at most of the major hospitals that know exactly what to test for in children from different areas, based on what prevalence rates are in that child's home country. If that is your situation, I'd get set up with them. Ours is run by an MD, PhD and has been very helpful to us.

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    GinEthansMomGinEthansMom
    imageMummyGruetzie:

    are you seeing an immunologist or hematologist? DD has recurring infections and slightly off blood counts on the standard blood test. When we went to the hematologist they did a different test that showed a more pronounced immunodeficienc, which makes her more susceptible to infections. They want to do IV/IG or subcutaneous IG treatments to help prevent them. We have an appt scheduled with an immunologist this month to see what they think about the IG treatments and to have them run some other tests.

    Also. I think I caught from Auntie's post that DS may be from China (?). Sorry-- I think I missed your other posts. . .  If you adopted him (we're in the process with DD), there are adoption centers at most of the major hospitals that know exactly what to test for in children from different areas, based on what prevalence rates are in that child's home country. If that is your situation, I'd get set up with them. Ours is run by an MD, PhD and has been very helpful to us.

    Thanks for the input!  DS isn't adopted, I think Auntie was referring to her hygienists child...

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