Seems everything is starting to look up.
We asked another doctor to manage Ben's behavior medicine. She has more experience with CHARGE and knows what seems to work for those kids. She started him on something new and so far, so good. We are keeping our fingers crossed that he doesn't start back into his usual cycle (great at first on the new med, then a downward spiral). The medicine he is on now is called Naltrexone. Anyone have any experience with that? So far, the only bad side effect we are seeing on it is trouble sleeping and restlessness. With time, they say that should improve.
School is going so much better. His days aren't as bad and some are even good. He still prefers to be home, but a definite improvement.
The new day nurse who we really loved agreed to take on our case permanently. Couldn't be more thrilled about that. She has a big heart, is wonderful with Ben, advocates for him while he is at school, and has been picking up sign language really fast. We are very fortunate to have her.
No new updates on the Home Care Waiver front.
1 comment:
So glad things are looking up for you guys. Thank you for always sharing the good and the not so good as hard as it may be. We are always thinking about you guys.
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