Just wanted to note that Matthew has only had one or two, 14 second seizures in about 6 months. He has not had seizure meds upped in almost 2 years. He has had his phenylbarb reduced by 1/2 tsp.
Wonder what the neuro is going to think about that tomorrow? I have missed the last 3 appointments but I have to go this time, just to so he can continue to get refills on his seizure meds. Usually Dr. Veda just looks at me funny and says well, just keep doing whatever you're doing. I usually just tell him, I'm not doing anything but loving him and praying for him... that's all...
The only thing that worries me right now is the times he gets pneumonia. It's taking him longer and longer to get over the stuff. I think next time I'll take him to the pool. I need help keeping him active. Peopld don't understand what I mean by that but I just mean, rolling him every few minutes or moving him from one place to another at least every 45 minutes... He's getting heavier and heavier,, maybe we need to see the endochrinologist again? I am going to post an older post regarding siezures and you'll see for yourself that prayer does change things.
If you'd like to read the complete post, you can find them in the archives on the left.
2004
Ok, I've done everything I know to do and still no luck getting the myoclonics under control. Now we are dealing with myoclonics AND laughing seizures. The lamictal has not done anything to help. All I have been noticing is that the jerks were getting harder and now it's a mix of jerks and laughing siezures. I wanted to avoid the hospital as much as possible for our little man but the neuro says to bring him in for another EEG and then he can either up the lamictal more or add another seizure med. Im going to tell him that I don't want matthew like a Zombie. He said that a few of the jerks don't bother him so I am much willing to deal with a few of the jerks than having him totally zonked out all day and night. That's no way for a little boy to have to live. What little bit we can do with him is out of the picture if he is sleeping all the time. THat also leaves room for him to get sick and possibly,,,
2005
Matthew is doing great. Only has seizure whenever he falls asleep. Maybe two a day . He gaining weight again. That vacation was a much needed one. We have not been ANYWHERE in three years, except for maybe a weekend getaway. I realized when I was watching the videos that we sure had a lot more fun that what I thought I did. I also realized that you couldn't pay me a million dollars to be doing anything else at this time in our lives. It's rough sometimes and we just barely get by but God always makes a way for us, like he did when we went on our vacation.
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