Living with Seizures

Zack is 26 years old and we believe has Asperger’s syndrome, part of the Austism spectrum. He rarely leaves the house but is very intelligent and is constantly teaching himself. He has taught himself Latin, some French, German and Spanish, loves Japanese and Chinese, English, HIstory, etc. He has auditory sensory sensitivity so he does not like to be outside much during the daytime - too overwhelming. He does not drive or ride a bus. His hearing is off the scale according to the Shriner’s testing.

He started having seizures in April of 2006. We couldn’t find anyone in our family who had seizures but my Grandmother on my dad’s side said she had small strokes all her life…she lived to be 94. Zack and she talked often about how similar their experiences were and how they felt. Zack’s seizures occur every 28-30 days. Just like clockwork. You can see the few days before they are coming and he has no ability to control them. He tries. On his “seizure day” he can have from 4-12 seizure episodes usually from 1-2 hours apart. I have a log. The worst was March 10, 2008 when he had 12 seizures over a 17 hour period. He experiences short term memory loss after the seizure day. He almost never remembers the seizure day. At times he will have a small seizure the day after his daylong seizure event. But he never has them any other time. He can start having a seizure in his sleep or awake.

The same place in his brain hurts severely after he has the seizure and accumulates so that when his seizures are done for the day he has a severe headache on the left rear side of his brain. He always ends his seizure day by uncontrollably vomiting. He often loses bladder control several times during his seizure day. He always starts his seizure pattern with several days of his stomach being upset or bothering him. Most of the time he stops eating altogether during that time. If he eats it is usually simple soup. I have FMLA on him and always leave work to take care of him when the seizures start. The worst place for him to be stuck when having a seizure is the bathroom. He has been injured several times and it is difficult to get him out while the seizure is ongoing. It is very stressful to watch him go through this every month and I can’t help but worry I am losing part of him.

He is losing part of himself. He rarely speaks during his seizure day until the seizures are finished. Then he has difficulty forming and finishing sentences. His ability to express his thoughts is greatly diminished. I can’t explain why the episodes are so patterned and predictable. I would love to know. Could it be something builds up until it just goes or could it be connected to something hormonal that occurs cyclically? We would both like any advise or comments. He has a neurologist and has been determined to not be epileptic. The drugs had no affect on his seizure pattern or episodes. They just made him feel strange. I fear some day he will get stuck and won’t be able to make it back. Does that happen? He says he is “in there” fighting to get back but it is overwhelming.