Seizures

Its horrible to hear that any child is having seizures but the worst blow is when you are told your child has Infantile Spasms. Seizures of any kind are bad but Infantile Spasms is not what you want to hear. IF left untreated IS will cause brain damage. When you have a brain damaged child and you are told Yes your child has IS the only thing is what can we give the child to stop these seizures. Well every child is different and what works on 5 kids might not work on your child. Our Finnian was diagnosed with seizures on the 3 of September2005, we were told he has seizures and they put him on phenobarbatol. I used to gag everytime I went to give him the med becasue of the smell of alchol off of it. But it seemed to be working but in October we had to bring him to the ER again with seizures, they increased his dose of med and it seemed to help but in November he finally got the Infantile Spasm diagnoses it was only then did his brain waves give the diagnoses but his neuro had suspected IS in October. So finally a diagnoses and the next thing was which treatment to start him on. They decided to try him on Vigabatrine but the only catch was we had to get it form Canada as it was not FDA approved. The one side affect is damage to the vision, but Finnian already had damage due to the stroke so we really didn't know how much vision he would ever really have. The Vigabartine worked and within 3 weeks he was smilling and interacting with us again. It wasn't until he smiled that I realized he hadn't done that in a good while. By Febuary he was having seizures again but they were different so not only did my child have IS but he was having other seizure types too. Today we have the IS basically controlled but its the other seizures that we are fighting with. So many meds and they all work for a while and then well thats for another time to talk about.
I go over in my mind that I should have pushed for him to be checked out for seizures earlier. I did have a child with brain damage form a stroke. But I thought that his "things" he did was due to the stroke looking back over what I know now he was having little seizures since he was about 2 mths old but I just put it down to a sensitive tummy and his brain damage as to why his was so jumpy, jerky. Do I feel like kicking myself in the rear end over the signs I missed hell yes and I do blame myself. And I wonder if ti was something I did that caused the stroke. I cannot beat myself up over it Finnian is Finnian and this is the Finnian we love the one with all his problems and yes maybe I do have a bigger attachment to him becasue he needs me more. But I cannot put all my time in him his brother and sister need me too and I still have not found the right balance to split my time between everyone. I guess I am still learning .