Well we got the call yesterday that we are being given the OK to start the new med for the seizures. He will be starting on Banzel also known as Rufinamide. This has been approved for children ages 4 years and older. It is more of a broad range drug in seizure treatment.
The only con right now is first we have to get him on the drug first before we can wean him off one of the others. So that means he will be on 4 meds and the keto diet for awhile. So fingers crossed that we don't have too many side effects. The most common are; upset tummy, sleepy and make him a little off balance but once the body adjusts most of these symptoms go away.
So now we just have to wait for the script and the wean on schedule it's coming in the mail.
Am I looking forward to him being on 4 meds and the diet? To be honest no but hopefully it will work. The poor lad had a rough end of April and May with seizures but the one thing he didn't regress. I think it has been the first time his speech didn't go. He has started to make new sounds the best is he does have a new word "this". Its funny to watch him we tell him " Finnian where is birdie?" He puts his hand out searching on his tray and when he gets something he will give a look and say"tis?" If he is wrong you just tell him no and he will let it go and search again until you tell him "Yeah Finnian you found birdie" he gets so proud of himself and gives a cheeky grin and a whole load of babbling comes out.
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