Wow time is flying!!! So Miami... Good news/Bad news...
First off we received an official diagnosis of Infantile Spasms. She has always shown the characteristics of the disorder, but never any of the EEG markers that are typical. So she was hooked up to the video EEG for some thing like 24 hrs and the readings showed the beginning stages of hypsorythmia. This is the marker of the infantile spasms. So that was the bad news, as this is something that if not controlled can be very damaging.
Good news. They started us on a medication that is not FDA approved. It is the first line treatment in the rest of the world, but due to the fact that it is not made in the US, no one profits, so no one is working towards getting it approved... Well anyway we were able to get the drug on a compassion basis. So we started her on the meds right away, and it has made night and day difference. She is still having the seizures, but she is smiling, and cooing, and talking. She is holding her hands in a very relaxed manner on her chest. She is following things with her eyes. She has really come out of the funk we had fallen into. The Dr told us not to expect to see anything for at least 10 days. Well the first day we took it I could see a difference. Praise the Lord!!! We are enjoying getting to know our new little girl. Please continue to pray that the seizures will indeed stop and that complete healing will come to her.
3 comments:
I am so glad she is doing so much better! You can tell everyone is much happier now! We are still praying!
You all are in my prayers every night! Love you all so much, big kisses to Avangeline from Aunt Kari!
It's so awesome to see the difference already! We'll keep praying that things keep improving. Give me a call so we can schedule my makeover! ;)
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