Friday, April 01, 2011

The flip side...

Before I continue on with my positive streak (I know one positive post doesn't constitute a positive streak but that is the direction I am going to try to go in), I will update on meds and seizures.

Since Sophie had her third relapse since surgery, we have made the following med changes... Weaned Dilantin. Added Vimpat. Weaned Vimpat. Reintroduced Dilantin. Weaned Depakote. Weaned Dilantin. Added ACTH. Weaned ACTH. Added Prednisone. Added Zonegran. Weaned Prednisone. Added Vigabatrin.

So, currently, she is on 225mg of Zonegran at night and 500mg of Vigabatrin twice a day.

She is tired. She is very wobbly. She is not talking as much.

She is only having one small, very mild cluster in the early morning.

We are waiting to increase Vigabtrin in hopes that some of the side effects will subside. We may have to decrease the Zonegran. And I hope with every last ounce of my being that Vigabatrin will work. Because the next option is to seriously consider surgery. And something as simple as putting on her backpack will no longer be simple. And I cannot bear to go there.


Anonymous said...

Sending only positive thoughts Sophie's way!!

Love, Aunt Barb

nchlsgdk said...

My Thomas didn't have surgery, but did have epileptic spasms reoccur after 10 years seizure and med free. We did Zarontin and Depakote, then Depakote and Keppra, then Depakote and Zonegran, and finally Depakote and Felbatol was the one that worked for us-been about a year seizure free on that. Zonegran was no good for him-lost 20 pounds due to lack of appetite,school work declined-just a bunch of yuck. Felbatol was a godsend for us.

kelley&brandon said...

praying hard for you all and that the med works - praying that you never have to consider surgery again for beautiful Sophie