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Message
Posted by Wendy on August 31, 2000 at 11:16:19:

In Reply to: Looking for causes of sons Epilepsy and PFAPA posted by Randy on February 09, 2000 at 00:27:32:

: Hi, I would really like to get with you via email, my son will also be diagnosed with pfapa in about 6 weeks once this last test comes back negative. I have the ten year study done on pfapa and wish to share it with you. Also, I am currently reinitiating a survey for all parents going through this so we can find the CAUSE....there has to be one. Please contact me asap. Thanks, Wendy
: 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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