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PFAPA..Anyone on here have a child with this?

BabyCakes3BabyCakes3
in Special Needs

My DD had monthly fevers starting at 10 months old. As she started talking more, she was having headaches, leg aches & stomach aches at the same time. Then when she was 2.5 yrs old, her lymph nodes & tonsils were getting HUGE with each episode and not really going back to normal between episodes. Saw an ENT & after some other allergy & blood tests, she had her tonsils out. She has not had a fever since last April!!!!!!!

BUT she still has the leg & stomach pains. Lately, the stomach pain has been intense. TUMS seem to help short term. I'm desperately searching for something to ease her stomach pains. Vitamins, diet, meds, etc.

I'm having a hard time finding information online about why she's still having monthly "pains" and what causes it. I'm assuming it's inflammation related. But none of the doctors we've seen know anything about PFAPA. It took over a year & a half for her pedi to even mention this to us.

So, anyone know of a doctor I could contact with some questions?? Anyone know how the stomach pains play into all this crap?! What vitamins, meds or special diet are your PFAPA little ones on?

 THANKS!

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Re: PFAPA..Anyone on here have a child with this?

  • realisticdreamsrealisticdreams member

    Their are a couple of PFAPA related posts on this first page.  M has stomach problems but she doesnt' speak yet so I can't really relate.

    You need to see a rheumatologist.  GL 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • ToastieSimonsToastieSimons member

    Ditto PP about a rheumatologist.  DS had periodic fevers for 7 months (every 2 weeks 105+ degrees).  And then they just stopped.  However, our rheumatologist was very conncerned if DS showed any type of joint inflammation or joins stiffness or soreness during the episodes.

    They could all be related or isolated issues.  However, I would confer with a rheumatolgoist. 

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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