Monday, January 16, 2012

Rough Couple of Weeks

Ethan had been doing VERY well seizure wise. We actually went 4 weeks and a day between tonic clonics which is a new record! But after that he had 2 more within a week. Then we starting seeing the small jerks coming back. These are the same small jerks we starting seeing a little over a year ago. We had no idea what they were at the time as he was still only having tonic clonics then. At that time over the span of about a month those small jerks turned into clustering jerks, then clustering with loss of consciousness, then to almost non stop seizing all day. Unfortunately in the last weeks we have watched those small jerks come back, and now evolve into full myoclonic-astatic seizures with loss of consciousness. Basically they start with a drop seizure which has been knocking him to the ground which wasn't the case before, then the drops keep coming over and over, at this time it's about 10 in a row. Then it's followed by about a minute long absence seizure. He's unconscious the whole time. These have been happening several times a day now. The path things are taking is so similar to what happened this time last year, and I'm very fearful that we will end up where we were then. We were literally in the hospital every other week for a week at a time. We have an appointment on the 23rd with his epileptologist so I guess we'll see what the next move is then. It seems they always just want to throw more drugs at him. But these are the same drugs he's been on for a year+ that have never worked. I don't really know why they think increasing doses will do anything. I suppose they feel they have to do something, but it's very frustrating. There is a new drug that was recently FDA approved that we will be trying out though that's called Clobazam. It has actually showed promise in other kids with Doose, so we're hoping for the best!
Ethan has also completed his first 2 weeks of school! He loves it! He has a personal aid that says with him all day to keep him on track, and watch out for medical issues. It seems to be going really great so far! He shoves me out the door when I'm dropping him off because he can't wait to get in there and have fun! He seems to be adjusting well, and working on making new friends. He does have to wear a helmet when he's outside playing, but he doesn't seem to mind, and the other kids don't seems to notice. I guess that's a great thing about 4 year olds, they don't notice differences in kids yet. Taylor and I also have a great time when he's in school! We like to go out every day to play and run errands together. She misses so much one on one time because of all of Ethan's medical problems, so it's nice for her to have some time.
Ready for his first day!
So hopefully where the seizures are now does not get any worse, and we don't go down that road again. All we can do is try to stay positive, and realize that there will be ups and downs on this path!
Just because it's funny, can you see the squirrel he was trying to get??? He's going to have to be faster!