my daughter janelle who is in the process of weaning her pheno. 5 months old has daily seizures averging 5-9 a day my question is has any parents been through this process, i understand phenobarbital has a long pastlife and remains in the system for weeks since janelles first dosage change was a month ago and labs on the first of this month, her level is 10 she usually ranges 35 or so.
i thought by taking janelle off pheno. she would be more awake, but all she does is sleep. she is also taking toppamax 125ml and 200ml bid of keppa.
would it be wise to try tampering her off keppra right away, and since she is still having seizures should we try another sz's med.?
i'm conveince toppamax is doing the trick-but if we go up anymore on the dosage she will never wake-up bad enough she already has trouble being able to drink a bottle .i wonder if i should be satisfate with the decrease of seizures and accept it for the way it is or continue the fight! and see if another medication is possible?
with not being able to enjoy normal baby milestones such has her first smile, favorite toy, words ect..
its hard to see her seize, and i really want to stop her seizures and let her have a chance to develope but i wonder if i could be rushing it and causing more damage?
just a curious mother looking forward to reading other concern mom/dads who have been in this situation responds-