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Periodic Fever Syndrome

LisaN517LisaN517
in Special Needs
Not sure if this is the right board but I'm trying to find any other moms dealing with this. It's been a rough 6 months and an overwhelming dr apt this am. Thanks!
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Re: Periodic Fever Syndrome

  • realisticdreamsrealisticdreams member

    imageLisaN517:
    Not sure if this is the right board but I'm trying to find any other moms dealing with this. It's been a rough 6 months and an overwhelming dr apt this am. Thanks!


    We were given this diagnosis a while ago now, for dd2.  I'm not sure how accurate the diagnosis really was, it was based on labs/clinical findings, but this was prior to knowing about her kidney issues, etc.  We were diagnosed by her immunologist & we started seeing her when she was only a few months old.  As M got older her fevers went up in temp too, the last one she had it was almost 106.  She is generally happy baby even when she has a fever that high.  However, she would vomit meds, so we had to give her tylenol suppositories which would get it down to 102-ish IF given as often as possible.  

    What dr did you see this morning?  We had seen a whole slew of doctors and were finally given prednisolone to give at onset of fever and it gets rid of it within 24 hours.  There are other meds that are supposed to do the same thing, as well as sometimes they recommend tonsils & adenoids removal. (that was recommended but the ENT said no because she was <0 percentile for weight, etc.)

    I know their is atleast one other PFAPA mom here, however I guess i just jumped the gun in assuming PFAPA was your diagnosis, since their are other periodic fever syndromes out there.

    Welcome to the board. 

    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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