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Posted by Christine Longton on September 14, 2000 at 13:04:01:

In Reply to: Re: Looking for causes of sons Epilepsy and PFAPA posted by Denise Ryan on September 13, 2000 at 20:36:19:

My son does not have Epilepsy but was diagnosed with PFAPA by a Dr. at the Connecticut Children's Hospital. I've read many articles on the subject but they don't mention a failure to gain weight. My son will not eat during his episodes which causes him to lose weight. Then, between episodes, he gains the weight back but no more. He's 2 yrs. old and was at the 75% for weight and has dropped to 45% because he hasn't gained a lb. (26 lbs. and holding) in the last 6 months. I was wondering if any other parents of children with PFAPA have experienced the same thing. I feel that I'm handling the episodes okay, just the fact that I'm putting him in the same clothes for fall that I was in the spring while I seem to be constantly shopping for larger sizes for my 4 yr. old. Anyone is welcome to e-mail me at

: : I would also love the articles that you have been giving on PFAPA my daughter was just diagonised with this today. 9 -13-00 please respond to my email. : : My son was diagnosed with PFAPA in May of 2000. He to is a very heathly child except when he gets his fevers.
: : : We seen a specialist at the Childrens Hospital in Denver, CO. The the mentioned that PFAPA could occur in families
: : : with a history of cancer sores. My husband has a history of cancer sores. My son fevers started over a year ago. We were hold
: : : one of the treatment was to give steroids within the first 24 hrs of the fever. This is not a cure. The steroids needs to be given until he
: : : outgrows FPAPA. My son just had another case of FPAPA last night. His fever was 104.2. He has not had a fever since.
: : : Our doctor has given us 3 Medical Journal articles on FPAPA. If you would like copies please let me know.

: : : : Last November(1999) our son had a grand mal(tonic clonic)seizure
: : : : which lasted about 15 minutes.
: : : : He was taken to the hospital and spent 3 days there where he had an
: : : : EEG done, cat scan and numerous other tests. He was then referred
: : : : to a pediatric neurologist and was diagnosed as having primary
: : : : generalized epilepsy based on the EEG(cat scan, MRI and all other
: : : : tests came back normal. He was immediately put on Depakote 125mg
: : : : twice a day(the carnitor is to counteract the side effects of the
: : : : depakote). He was a very healthy child up until the beginning of
: : : : last year(shortly after he turned 3) when he also started having
: : : : a fever around once a month(he did not have a fever when he had his
: : : : seizure). The fever lasts for 2-3 days, goes up to around 104
: : : : degrees and there are no other symptoms with it. We were referred
: : : : to a pediatrician just recently for this(because our family doctor
: : : : could find nothing that was causing the fevers) and was diagnosed
: : : : as having Periodic Fever Syndrome or PFAPA and they feel that the
: : : : fevers and Epilepsy are not related. We are wondering though if
: : : : the two could be related or if the fevers may be a form of
: : : : migraines or if he has an allergy of some sort that is causing all
: : : : of this. He has not had any more grand mal seizures, but he has
: : : : what we call "starts" of seizures where he will suddenly jerk
: : : : forward, but then it is like he catches himself. These seem to
: : : : occur when he is tired or stressed. The cause of his Epilepsy is
: : : : unknown and they say he may grow out of it. There is also no
: : : : known cause for PFAPA and it is also something that they say
: : : : he should grow out of. So we don't know if we should just
: : : : accept what the doctors say or look for a possible cause or
: : : : where to start if we do.

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