Posted by DEBRA LEMONS
on August 29, 2000 at 18:43:35:
In Reply to: Re: Looking for causes of sons Epilepsy and PFAPA posted by KAREN HALL on July 07, 2000 at 10:22:04:
: : 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.