Monday, August 14, 2006

Sorry about not posting more often...
I just feel like I say the same thing over and over. I wish I had some good news to share. Well, I guess I do have good news but it is just overshadowed by the fact that she is still having seizures. The good news is that we can now take Sophie out in public. I am so paranoid about it, though. I spoke with three doctors before taking Sophie to our family get together this past weekend. I spoke with Sophie's main pediatric neurologist and he said it was okay. Then I called her pediatrician and she said it was okay. Finally, I spoke with another pediatric neurologist (while we were getting a second opinion on Sophie's overall treatment) and he said it was okay. With all that said, I was STILL paranoid about her immune system. Well, it's Monday and we survived the weekend. Actually, we did more than survive, we had a great time. Sophie got to spend time with her cousins whom she had missed incredibly and go swimming for the first time. Before Sophie became sick, we would spend so much time at my sister's house while Brandon was traveling out of town. This is actually the first time Sophie really got to play with them since she became sick. There was the occasional visit at the park but she was never allowed to get too close.

About that second opinion... We met with a pediatric neurologist last Wednesday to get another opinion on Sophie's treatment options. He agreed, for the most part, on the care Sophie is currently receiving. It is what happens next, if the Topamax does not work, that is debatable. There is one drug, Vigabatrin, that is considered a first line treatment for Infantile Spasms that is not FDA approved (but still easily accessible in the USA). Vigabatrin is highly regarded in Europe and Canada but is still being researched in the United States due to some of the serious side effects. Well, our current ped neuro is against it while the other ped neuro said he would highly consider it. Gaining seizure control is so important. The longer she has seizures, the less chance she has of ever gaining seizure control with Infantile Spasms and the higher the chance the Infantile Spasms will turn into another seizure type. I am most afraid of Lennox-Gastaut syndrome as there is a close relationship between Infantile Spasms and Lennox-Gastaut syndrome. Lennox-Gastaut syndrome is a severe form of epilepsy that is very difficult to treat. So that is why it is so important that we choose the drug with what we believe has the highest possibility to control the seizures.

1 comment:

Great Aunt Barb said...

I'm so excited that
Sophie gets a little change of scenery and can now share some experiences with her cousins. It must seem like a whole new world to her!! Hope she makes the most of the rest of her summer. Maybe we'll get to see her if we get in for Carrie's shower.

Love to all of you,
Barb