We went to the wading pool today. It may be one of the last days of summer for us. Emma starts school on Wednesday! 9-noon, 5 days a week! Big girl. They teach French and sign language! It's our first experience with Montessori. Should be great.
Nora starts school 9/17. It is going to be a busy year I think. Hopefully Nora will continue to make progress and start catching up to her age level. Still no signs of talking but she is interacting so much more that I hope with all her therapies, we'll at least get some sort of communication soon (sign language maybe).
All is well with Nora's medication. We are slowly increasing her new med (Lamictal) and will be lowering the old one(Zonegran) in Oct.
Luckily, Nora is done with ACTH. Apparently, the drug co. that makes the steroid that got rid of Nora's Infantile Spasms is now increasing the cost from about $900.00 per vial, to $10,000 per vial. It seems a bit crazy I know. Nora's whole prescription cost about $10,000. IF she would need to have it again, it would possibly be $100,000. NUTS! Read the following article and see for yourself....
http://biz.yahoo.com/bw/070827/20070827005278.html?.v=1
I don't know how kids with IS are going to get the treatment that may rid them of the seizures.
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.
No comments:
Post a Comment