Things are looking a little brighter over here for our little angel. The other day they started her on vitamin B6. According to the neurologist (as we call him, Dr. James Taylor), giving B6 is a first treatment for infantile spasm in Japan, but a study will never be done in the US to determine the exact effectiveness because there is no money in it. (Boooooo.) Mom and I noticed Sarai was a little more herself on Monday, cooing and a little more awake and active. Dr. James said that the “background” on the EEG (her brain activity when she’s not having a spasm) shows a subtle improvement since the B6. I think he originally felt that a positive response to the ACTH was a long shot, but he feels that with her most recent MRI looking good, no real red flags in from her head ultrasound, and the little improvement after starting the B6, he said, “My gut is telling me that she’s going to respond to the ACTH.” We’re going to have a long road, and it’s a long shot, but we’re going to go the distance!
The EEG is off. That was nasty. They glued the electrodes on with, basically, superglue, and took them off with, basically, nail polish remover. Could this process be any more like torture? I don’t think so. They smeared her head with bacatracin, and she’s going to have glue in her hair for days. But it’s just so nice to have her out of her crib, be able to walk her around, snuggle with her! She already seems perkier. She had a big dinner, cooed and even smiled a little. I miss her smiles.
The ACTH should be here tomorrow. Here we go. Let’s pray it will stop the spasms with no side effects!
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