Apointment with Neruologist

Well, we met with our neurologist, Dr. Kornblum on Tuesday. I had a huge list of questions which he did his best to answer. And we left feeling more than a little down.

Basically, because there are so few cases of this a lot is not known. And I hadn't considered the possibility that maybe nothing, not even surgery would stop her from seizing. I did have it in my head that maybe we should skip to surgery, since I know it can have a very high success rate in eliminating seizures entirely - but my expectations were brought back down to earth. The Dr. said he would not want to operate until she was a bit older, like 6 or 12 months old. And that was only if, at that time she was a strong candidate for the surgery, which would involve another hospital stay, in depth testing and possibly getting a second opinion (in depth testing included) at another hospital (he suggested John's Hopkins or Harvard Medical School).

It is really hard to sit here and watch her have an episode, especially when she screams every time she has the spasm (which can be 20-40 times in 8minutes). Researchers beleive that these spasms aren't harmful, the problem is they prevent the brain from it's regular learning which can slow developement, and after a seizure people tend to be confused for a bit and then want to sleep. Dr. Kornblum says that it isn't the spasm that can cause autism, epilepsy or development problems, it is the thing that is causing the spasms.

I emailed out the link to this blog to my family and friends and almost right away my cousin Julie got back to me. It turns out someone she knows has a child with a very similar diagnosis. So I'm looking forward to talking with her. On her blog about her son Ty, she had this link about surgery as a cure for Epilepsy. http://www.msnbc.msn.com/id/18786765/from/ET/ I thought you might find it interesting. Of course, we are still hoping that the medicine she is taking will help. Cross your fingers. The Dr. just doubled the dose, so hopefully there will be some improvement.

As far as the chiropractor goes, the neurologist is strongly against it. He said it won't help and it could hurt. Acupuncture is the other thing we were looking into, and he supported that although, he feels the needles would be really uncomfortable for Marleigh and that you always have to be careful not to expose her to infection. I think there is also a kind of pressure point massage they can do, and I like the spiritual aspect of it. We are going to avoid herbal treatments for the time being, aside from the vitamin B6 that is. As for me, I'm still going to make a chiro appointment ;)

Keith is doing good. I think it is hard for him to be back to work with all this going on. But he has enough vacation that he can take days off when she has an appointment.

Dylan is also well. He has a lot of fun at his preschool and enjoys being a Big Brother. He was pretty worried when we were at the hospital, asking a lot of questions about the wires on her head and the IV. But now he seems better. He likes to lay on the blanket with her under the play gym.

And finally, Marleigh is actually doing great. When she is not having a spasm she seems totally normal. And today, for the first time, she smiled back at me. She had been smiling, but this time I know it was in response to my smile. That gives me some hope that she'll be OK.