Our Finnian is home. I am so happy so now we can get back to our normal, well what ever that is.
I don't know about his stay I have been getting conflicting reports from doctors. So called to get an appointment with his doctor and cannot get through to the office.Maybe they have my number blocked. I think I ruffled some feathers but hey its my kid and I only want the best for him.
I know he will always have seizures and even with medications we will always be chasing them.
The one thing everyone is so keen on pushing is Clobazam. It seems that this is the new wonder drug that isn't even FDA approved. Maybe this might be something that would work on Finnian but at least try the other meds first. I am not a lover of the benzo family of drugs. No more than the klonopin he was only supposed to be on it to get him off one med so we could put him on another but it seemed to be working so he has been on it for the last 3 years. The thing is we cannot go higher on the dose becasue when we do he doesn't stop drooling and needs to be suctioned alot. I will be damed if I have to add another med to stop him from drooling on top of everything else.
It seems like we are damed if we do and damed if we don't.
No comments:
Post a Comment