I just came back from Asher's first follow-up with the Neurologist and things are going better than expected. Since he hasn't displayed any seizure activity since early in his hospital stay, they are listening to my desire to ween him off of the Phenobarbital. We have an EEG scheduled the end of this month and that should tell us if he is still having seizures or not. If that is clear then we can start to cut back his meds. WOOHOO!!! Anytime we can eliminate a medication that just SHOUTS to the natural world how he is getting better! I remember a conversation I had with Asher's nurse, Bill, in the hospital before he went in for heart surgery. He told me to count the number of medication pumps he is on after surgery, then I would have a guideline for his progress each time I came in and saw fewer and fewer pumps ;) I feel the same way now when dealing with his meds. So far, we are through with the Methadone and now looking towards dropping the Phenobarb and possibly the Amoxacillin if his Kidney Ultra Sound comes back normal. That would just leave him with Vitamin D and Diuril (diuretic) ....and that I can handle...for now ;)
I'm just concerned that the drugs are going to handicap his mental and physical progress. I realized the other day that his EXCELLENT sleep cycle through the night might be connected to his phenobarb usage, since it can make you groggy, sleepy and a little disoriented. If it is connected, then I'll put up with less sleep if it is better for Asher in the long run....with God's help of course!!
Ash just woke up....gotta jet.