Friday, March 13, 2009

Goodbye Keppra, It's Time to Go !

Last week, we were given the go-ahead to start tapering Jessie off of one of her seizure medicines called Keppra. Dr. Vining, Jessie's neurologist at Johns Hopkins, reviewed her latest EEG and determined that there was no apparent seizure activity. (Praise the Lord !)

So we've began the taper, which will last approximately 6 weeks. At the end of that 6 week period, Jessie will only be on one anti-seizure drug, Tegretol (100mg, 3 times daily). This is actually a pretty low dose too.

Removing Jessie from this drug is not without risk. She could start seizing again, and Diana Pillas and Dr. Vining warned us of this risk. However, the upside is that Jessie will have less of a clouded mind at school. The bottom line is that seizure medications slow down the brain, so the less the better so long as seizures are not present. Please pray that this taper goes well, and that Jessie never takes Keppra again. We are excited and scared out of our mind, all at the same time. But this is a good thing that we have to try.

I'll let you know how it goes. It is estimated that as many as 50% of hemispherectomy patients have seizures that return. Generally, they are not as bad, and less frequent. We'll see how it goes. Dr. Carson left almost no brain tissue on the right side, so we hope that there is nothing left to seize. It gives us something to hang onto anyway.

Many of the children that had surgery about the same time as Jessie, in various parts of the country, have had seizures return. It is still a VERY Real possibility. Things have gone so well so far, and I hate to jinx it, so we remind ourself all the time that it could happen.

Positive thoughts....positive thoughts....positive thoughts....prayers...prayers....prayers.

I hope that everyone has a Blessed Spring Break with lots of family time and lots of rest.



Jane Stefanik said...

YEAH JESSIE!!! Have a GREAT spring break!!! Maybe it will be warm enough so you can do some more swimming!!! You guys are crazy kids!!

Jane, Samie & Nickie

Kelly said...

I'm going to leave you with different odds.... we were told (and have read medical studies) 80%are without seizures with Ramussen's.... remember others have the same surgery for different reasons. Abby is still 4years and not a twitch. We have vowed that we will not worry about seizures because TODAY she hasn't had one.

Anonymous said...

Sounds like everything is going great!! Chance too hasn't had a seizure August 6. That is 1 week more than 7 months now. Since the day he was born, he never had peace and is awesome!!! I am so glad that we chose to go down this path and I thank you all in Texas for giving me the initial 'can do' attitude that made the decision a little bit easier. I can't say thank you enough. You are doing good things with the foundation. Prior to this, so many (more than anyone could have ever imagined) people didn't have anyone to turn to and now you are there to hold their hands and help them along. Thank you from all of us. Hope to see you in July!!!

Holly said...

praying the wean goes perfect and no seizures.

Unknown said...

we will continue to pray for Jesse.

You are right. There is no infected tissue to cause problems, so I wouldn't worry too much. Did the seizure meds stop her seizures before her surgery?

Joey Alward