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Posted by PFAPA SYNDROME on December 20, 2000 at 22:03:13:

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

: 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.

My son was diagnosed with Pfapa Syndrome last year at age 4. It took almost 4 years to diagnose him. He does not have epilepsy. He did have mono at age 3. HIs Pfapa fevers are accompanied by fever of 105-106 and last from 3-7 days. We do not know the cause. His syptoms almost always look exactly like strep throat, but the culture is always negative. He gets bad diarea with it. He gets terrible back pain with it, and often throws up when his fever spikes. He gets night sweats and moans a lot at night. Our infectious disease specialist put him on a course of cimetidine, which he took for 6 months. His episodes have become much less frequent, although not gone completely. Specialist sees Pfapa as possibly autoimmune. Hope this helps.

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