September 28, 2008

Seizures, seizures, and more seizures....

Well Gage has been on the ketogenic diet long enough that if it was going to work I think we'd know it by now...sadly I don't think it's going to do it.

In the beginning I was hopeful but if anything his seizures have worsened. I don't think it's the diet causing them to worsen...I think it's just the progress of the syndrome. I don't really know if he's having more of them but they have definitely changed and seem to be a lot harder on him. He's actually had moments where he just cries and cries afterwards.
It's so heartbreaking.

I want to talk to Dr. Z about trying lamictal again. We tried it once along with the dilantin but one of them caused him to breakout in a rash...we don't know which one it was though...and I'd like to try the lamictal by itself and see how it goes. Hopefully they'd check him into the hospital if they agreed to try it so if he did have a reaction to it we could quickly get it taken care of.

I just don't think the felbatol/depakote combination is working anymore and I'm ready to move on and try something new.

Have any of you had any luck with lamictal??? I'm also curious about vigabatrine...I've heard it mentioned quite a bit in another blog but it's my understanding that it's not sold in the US.

Anyhow...Gage still hasn't started school yet...the ramp in just about complete though so I'm thinking possibly next week. I'm just hoping this school works out. I'm not going to lie...I have some reservations about it.
His last school was just so wonderful and I'm really doubting that I'm going to be as comfortable with him at the new one.

We shall see though....

2 comments:

Anonymous said...

We had some luck with lamictal but it seems like meds work for a short time and then stop. The seizures are worse than ever. He is on a new med that we plan on taking him off of. He has had a really hard time walking and keeping his balance since he started it. Poor little buddy. He hasn't been going to school and we were in the ER last week. He really had me scared last weekend. We have been using lots of rescue meds. Lots of moms tell me that depatkote and topomax is the combo that has worked best. We are on to Felbatol next. I am thinking of you guys.

Christy

Jenny said...

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http://yennysworld.blogspot.com/2008/11/i-am-so-honored.html