The State of the Union

Things have finally slowed down here. I finished my spring classes and decided not to take a summer class. I am going to enjoy the calm for the next week. Super D will be finished with Kindergarten on May 17th. Josh and Aaron will be out on the 26th. We will have a couple weeks before the extended school year starts for Daniel.

Over the last few months we have had some big changes for Super D. We had another EEG done at the end of March. The neurologist said it looked different than the one done a year before at the Cleveland Clinic, but the same as the last one we had done at KU Med. Basically, it didn’t tell us a thing. That is what we expected though. His EEG results have been pretty consistent.

We did start him on a new medicine. He has been on Felbamate for a month now. This is a drug none of the other doctors had mentioned. It is also the second medicine we have tried where we were required to sign a waiver before starting the meds.

When this medicine was in the trial stages, they suddenly had 18 people out of the 100,000 in the trial die. This prompted the lawyers to require a waiver, and likely why we have not heard of it before. Here’s the thing, most of the people who died were middle aged women with autoimmune disorder. The youngest death was 13. It is a nasty medicine, but that is where we are at with his treatment.

Now for the good news.

The Felbamate seems to be working! We are cautiously optimistic at this point. We have seen other medicine and supplements work at first, but then fail after a period of time. So far, we have been on this medicine about 5 weeks and we have not seen a major seizure in 5 or 6 days. Even the periods of “activity” that often lead to a seizure have been reduced dramatically.

I got to hear Daniel call me dada Saturday. It has been years sense the last time I heard that.

Hopefully this is the divine intervention we have been seeking.

For our heart is glad in him, because we trust in his holy name. Let your steadfast love, O Lord, be upon us, even as we hope in you. – Psalm 33:21-22