Mini Update/Nov

New Kiddie Kart to the left.... sleeping during therapy

We went to the neuro yesterday at Phoenix Children's Hospital. In the past month,we have not seen a significant improvement. Usually I try to be optimistic when I talk to the doctor, but fact is, we're still having over 30 seizures a day. Most are quick, but sometimes they happen in cluster.

The good news is, Matthew sleeps through the night, most nights. He is an early bird and I'm lucky if I get to sleep in until 6 AM. We go to be usually around 9, so as long as I go to bed with him, I'm ok (It's not always easy, when he's asleep it's a chance to do a few things around the house)

The doctor discussed putting him on the ketogenic diet. Again, at this point, I'll try anything. I may not love the idea, but if it improves his well being, I need to try. However, when I talked to the dr he suddenly was not wanting to start the diet. He knows that we are trying to get stationed either in Phoenix or St. Louis area. (Chris is still in Pensacola, we have been apart for about 5 months while I get Matthew better health care in AZ). Dr when you start the diet, there is a lot of follow up, labs, etc. It can have side effects on the body as well, so it needs to be monitored. He said he wants us to be in AZ at least 3 months to commit to diet. The thing is, I was ready to start the diet months ago, but he said the same thing, even though I told him I'd be in AZ until AT LEAST end of Nov/Dec.

We are continuing to play with meds. His current medications include:

Topamax

Lamictal

Depakote (although, coming off)

Klonapin PRN when he has bad clusters, even though it's supposed to "knock him out"...he doesn't even nap! Oh, and it doesn't usually stop seizures either

We are starting Prednisone. He was on it over a year ago, but his seizures were different then. We are trying it again. It's a short term med (only 1 month) because it's a steroid.

These are some past medications we've tried:

Keppra

ACTH (worked great but can't be on it long term...this is the only med that cleared his seizures)

Tegatrol

Banzel

We follow up with Neuro in 3 weeks.

Matthew has his kiddie kart now and has been making huge improvements with neck strength.