Can you believe it I told the doctor today NO. They wanted to increase his Banzel again don't get me wrong its is a good drug but its not the answer for Finnian. IF it was we wouldn't have the night time screaming episodes and his "shouting" seizures would not be comming every 18days instead of every 6-8 weeks.
When we started Banzel we were supposed to wean him down or even off one of the other meds he is on but that hasn't happened. Instead all I hear is increase, increas, increase no decrease ever mentioned.
Like my God he is not even 5 years old and he is on 4 yes 4 seizure meds the keto diet and we have trouble getting him to gain weight and he is also on 2 supplememts along with the other crap the singulair, pulimcort xopenex when needed diastat when needed and sometimes we have to give him extra klonopin depending on the type of seizure we have to shut down. What he is on is not the right ones but what do we change. I am opened to revisit Topomax now we have the feeding tube. I do not want to revisit phenobarbital that was a night mare I would prefer to forget.The klonopin is a love hate thing but I would like to see it gone from his daily regime I just hope the withdrawl will be easier than pheno. THe Keppra is a med I never had problems increasing but I think its comming to the end of the working stage. Oh I don't know.
We are going back to the genetic doc in December and if she cannot think of anything else to test him for I think we will go ahead with the muscle biopsy and get things either figured out or ruled out.
Fingers crossed that we can get in for the MRI soon and maybe that will show something new or maybe answers.
Oh today we went and got Finnian casted for new AFO's they should be ready in 2 weeks we went back with the solid ones again so we will see.
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