We met with Nora's neurologist today. For such a long wait to get in to see him, we really didn't seem to get any new info. We do like him and it will be good to have a permanent doctor that we see all the time. (or at least twice a year)
We did decide to put her on a new anti seizure medication, Lamictal. That is the one w/ the crazy rash side effect. We are starting very slowly with very low doses. It will take 3 months to get her to the level that she needs to be for treatment. We will also wean her off the med she is on now (which makes her cognitive development slow down). Hopefully, the Lamictal will be better for her and have no side effects. We shall see. We did ask why she needs to be on anything at all since she hasn't had any more seizures and the reason is that her EEG is still showing signs of abnormal activity... which may lead to seizures. This med is supposed to stop that from happening.
Nora will most likely need another MRI when she is 2 so we can check on her arachnoid cysts, corpus callosum, and the heterotopia. Just to make sure things aren't growing bigger etc. We'll have her hearing tested then too while she is under sedation.
Things have been a bit boring here. Just bringing Nora to school, speech therapy, physical therapy, Emma to swim class and doing summer things.
Hope all is well. Thanks for checking in!
Lori
This is Nora's story... Nora was diagnosed with Infantile Spasms April 24, 2007. Infantile spasms is a rare seizure disorder. Nora was put on an anti seizure medication April 26th called ACTH. Her seizures were gone after 1 week of treatment and haven't been back. Nora also has partial agenesis of the corpus callosum and arachnoid cysts in her brain. For more info, check out the history section below.
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