I was able to get us out of the 24 hr. Video EEG stay. We just had a prolonged EEG
(4 hrs long).
The prelimiary results of the EEG was that there was an occasional spike but no seizure activity. His background was between 5 and 7 which is slow for his age but is expected because of the brain malformation.
Yesterday we had our 6 month recheck with Dr. C., our neurologist.
And I'll tell you again, like I do every time I see him. I love this doctor. He ALWAYS has something good to say about Daniel. He takes his time with you and will answer whatever questions you have. This guy in my eyes...is the God of neurology (for the things Daniel goes to him for). I always leave with a good feeling. He believes in Daniel like we do. He KNOWS that there is something there.
I can tell him how Daniel scoring high on the receptive language and he'll say "Well I knew he'd do that", or how he is doing something in physical therapy and he'll say "Well sure he is, did you think he wouldn't?"
Unfortunately we weren't able to see our favorite nurse "Ms. Kathy" as we visited at an off site location. But we did see our favorite resident dr. along with Dr. C.
So as of right now, we are sticking with what we are doing. 500mg of Vigabatrin 2x a day with VEP/ERG testing every 6 months (which will fall in July) and in 6 months another EEG.
According to the doctor 500 mg for Daniel size is on the low side but because its doing what it needs right now we are not looking at changing it. I get nervous because there is the chance of vision loss with the Vigabatrin, but it is controlling the seizures. And who knows if we'll have such luck with another anti-seizure medicine...and what are the side effects of those?
6 comments:
Melanie, good to hear the appt went well. Have you ever heard of
Scopolomine patches? It's a motion sickness patch that you wear behind your ear but it has a side effect of causing dry mouth. We have been using them for Faith since she was about 2. They work really good and we have had NO side effects. You just change them out when you see more drooling. The brand name is Transderm- Scopolomine. We absolutely love them! We have had this talk with some of Faith's dr's before too but as long as she does well with the T.S. we will stick with that. Just a thought...
Encouraging update! Seizure control is so difficult - control by a good physician is wonderful. He is so cute/handsome. Barbara
Man, he is cute!
So glad that things are going well and the seizures are under control. Trying to find the right balance of meds/side effects can make you a little crazy! And I totally agree about surgery. UGH!
We always have so much to think about with our kiddos!
Congrats on a good appointment. Glad to hear all is well with Daniel!
Sounds great to me! What sort of surgery do they do for drooling? Cut out a saliva gland or something?
I spoke with Memhpis's ENT about the surgery for drooling, which thankfully Memphis does not need to have, since he only drools when teething. Anyway, the ENT said the easiet and least painful way to stop teh droolingis with botox in the salivary glands. Not really surgery but sedation and injections, takes less than an hour. Just a thought, if you are considering it.
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