MR, Autism, and Epilepsy

[Dixiebell]

Hi -new here - your forum was highly recommended. My son is Joe, he's 18. He was diagnosed with mental retardation at three, autism at six, and I saw his first seizure at ten. Sometimes Joe would make horrible faces at me - but he's such an angry child I never knew why until he dropped to the floor one day with a grand mal. Hundreds of seizures later, I understand that the face making, running around crazily in the middle of the night and marching all over the house was either the beginning or the end of a seizure. Some mother huh - I thought he was sleepwalking.

I'm in tears as I write this - eight years later - and tons of medication and he's still seizing - lately up to two times a day. They've changed in nature - now the corners of his mouth drop - it's pretty horrible - and 10-15 seconds later it's finished. He's not back to normal right away - he can't seem to form a coherent thought for a while. He's been followed by a neurologist over 100 miles away and a three hour drive. I've called - his neurologist just keeps upping his medication - sees him once a year to check the levels and "listen" (yeah right) to me. He had the MRI (is it MRI - I'm not thinking clearly today) a year ago - nothing had changed so why do his seizures keep changing - why does he have them so often now? Why isn't the medication working?

I heard I could pour my heart out here.

[LIZARD]

((((((((Dixiebell))))))))). :(

I don't usually come to this particular BT board, but I saw your post and had to reply. I would post this under "Child Neuro," too. I know he's technically not a "child," but we have a few parents of older kids/young adults who might have some thoughts for you.

Also, I have (among other things :rolleyes: ) a lifelong history of epilepsy, and I have learned that some meds just don't work no matter how much we increase the dose, and taking too much may actually worsen szs. I have taken phenobarb all my life, and it completely prevents my GMs, but it's never done a thing for my simple partials. Also, be aware that if he has more than one type of sz, he may need more than one med. Many meds only target certain types of szs, and others may be known to work on certain other types, but they don't work for all patients. I'm fortunate to generally have SPs only at season change, so I'm not on anything for them except magnesium, which takes the edge off. :) It makes them shorter, fewer, and less intense. I used to have as many as 40 each time! :eek: :(

I hope this helps! :) Follow me to Child Neuro: http://brain.hastypastry.net/forums/forumdisplay.php?f=115

*hug

LIZARD :)