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.