Wednesday, January 13, 2010

Completely Normal.....

We spent the day at Children's Hospital today where they ran some tests to see how, if any, Kylee's Seizure Disorder had progressed. She's not having any new problems, and in fact has not had a seizure since August of 2008.

I must say I am as confused as I've ever been. The EEG was COMPLETELY normal, without one single spike. We have never had a completely normal EEG since this all started in 2006. The last EEG we had was so much worse than the previous one and by far the worst one since the beginning.

That is great news BUT the Pediatric Neurologist, can't tell us if it was normal because the seizure disorder is gone or if the test done today was a "fluke". He said it is quite possible either is true. The seizure disorder could be totally gone. On the other hand, he said it is possible that if he repeated the test tomorrow it may look like the last one, totally abnormal.

So what now?

Because she has done so well, seizure free since August 2008, he wants to rapidly titrate her off her seizure medicine. This TERRIFIES me. It was a terrible experience when she was first diagnosed and we were trying to get her seizures under control. I ♥ seizure medicine as it has given her a somewhat normal life.

Good news is, if she has a seizure after she comes off her medicine he has plenty of time to regulate her before it's time to get her drivers permit.

Soooo, starting in the morning we will start a dose reduction and in 6 weeks she will be totally off her seizure medication. In 4 months we will repeat the EEG and see how it looks.

Of course, I am ecstatic at the thought of this terrible condition being gone yet filled with MUCH anxiety at the uncertainty of the diagnosis and the coming days.

There is a part of me that wishes the test had not been normal today. That may sound crazy to some of you and believe me I have received my share of criticism for saying that. See, she has been doing so well on this current regimen of medicine. She hasn't had a seizure since August of 2008. If the test had been the slightest bit abnormal he would not have even thought of taking her off her medicine. We could have continued to smoothly sail right along.

Did I tell you I am a nervous wreck?

I am.

Just sayin'

I'll keep you posted, Friends.

Love you MUCH!



  1. That is amazing!!! Can you imagine the boost in your girl's self esteem if going medicine free is successful?!

  2. i agree a WONDEFUL report!Let's just pray the results are what they seem!

  3. Gracie, sounds like we can swap some prayers for our kids. Our 17 year old daughter has to wear a heart monitor for a few days. She has been having a rapid and intense heart beat on ocassion recently and the doctors don't know why. Finally saw a specialist yesterday. He thinks he can fix whatever it is (something with the electrical function of the heart). But, it may require a surgical procedure going up through a vein in her leg (so they won't have to open her up). We spent 1/2 of a day in hospital yesterday.

    So, Let's be praying for Kylee and Kristin. Hope both girls are ok.