any one heard of pfapa?

P.Richardson - posted on 01/24/2011 ( 3 moms have responded )

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I was told ny a dr. at childrens hospital Salt lake City that my son of 24mo. has pfapa it is a new seizure disorder in males only between the ages of 2-5..with unexplained fever but no reason for the fever and no illness or infection my son was fine and by the time the ambulance arrived he went from 100.2 to 106.3 his seizure lasted 15 min. and he stopped breathing the 911 asked if we had a fibrilator at the house...he roused and caught a breathe but was still blueish...very scary to me ...with each siezure his chance of another increases 10%..he was not diagnosed with epilepsy...or a true disorder and they think tonsils are a related cause of this siezure mystery....I know this seems mild for all of you that deal with this daily but he is my fifth child and I found him face down at 13mo. in the crib having a siezure he could not move he was partially blue and drownding in his own saliva..had I not heard him grunting from my room I would have lost him how do you cope with the thought of sleeping....I have not fully slept in 2 years......

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Sarah - posted on 06/26/2012

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Periodic fever, aphthous stomatitis, pharyngitis and adenitis or periodic fever aphthous pharyngitis and cervical adenopathy (PFAPA) syndrome is a medical condition, typically starting in young children, in which high fever occurs periodically at intervals of about 3–5 weeks, frequently accompanied by aphthous ulcers, pharyngitis and/or adenitis. My daughter has PFAPA and as well as many other females.

Stephanie - posted on 01/26/2011

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How scary for you. I remember reading an article a couple of years ago in the NY Times I think about unexplained cyclical fevers and seizures, and that for some reason taking out tonsils and/or adenoids totally stopped the pattern for a very high percentage of kids who met the criteria. Might be worth asking the doctors about.

Anita - posted on 01/26/2011

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The Emfit Seizure Monitor is an amazing piece of equipment that can detect unusual or no movement in their bed. This has been a lifesaver for my son many times who alarmed in the middle of the night having major status seizures that last between 30 and 40 minutes. We are now able to intervene easily when the alarm notifies us. They are 600.00 but will take monthly payments from you without worry of credit worthiness etc. just debit from your account as low as $50.00 a month. They are a wonderful company to work with. Their U.S. rep Christine, is a doll she is out of Austin Tx. You will sleep like you used to with this monitor on board. Their number is 512-266-6950 or you can contact the Dannny Did Foundation to recieve supplemental help to purchase one! Good luck!

Anita Herold
Beaverton Oregon

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