Well we came home after another stay in the hospital. The nasty seizures we keep trying to get on EEG don't happen when hooked up but of course happen when not. We did get an MRI done while we were in the hospital after a bit of arm twisting on my part. They had put him in for an MRI the guy from anesthesia came and then the next morning no word of it.They decided that he didn't need one but we would have to wait until Feb to get one done as an out patient. I was a bit peeved. They said when we were at the doc office in September they would order one but found out that the order wasn't put in until the end of October. So the Lioness came out in me and everyone was very surprised. I just said you want to wait until he is more stable the kid hasn't been stable since April and now you want to wait until Feb to do one and oh yeah I'm not agreeing to put him on the new med, my kid has brain issues and its not important well I will have to see about that. Not only did he get the MRI which would usually run about 45 mins to 1 hour he was in the MRI for about 2 hours there were additional test added.I am still holding out on putting him on the medication because I cannot see changing one benzo for another one and still keeping him on all the crap he is on. I gave the doc the link to some of his seizure videos and I asked if she had seen them. She said " Oh yeah the ones on seizure tracker" I said yes thats what Klonopin gave him but at least I know how to treat them. Lets put it like this she didn't know what to say.
On data I was able to find on the wonderful net I got them to agree to reduce his keppra down to see if we could get more control well now we wait and see if it will work.The one thing I did get was for them to finally say "Yes he does have Lennox-Gasteaut syndrome" Its not a great diagnoses its a very hard to treat form of epilepsy and some times medication resistance. I have always known that we would always be chasing after his bloody seizures. Talk about a child keeping you on your toes.
3 comments:
In my reading of parent blogs I truly admire how parents like yourself become so competent in the pharm stuff.
This week I listened to several presentations from the World Disability Conference (free) online. I learned about it on http://trevorshope.blogspot.com/
The presenters from Beth Israel were very impressive. You are in NYC, aren't you?
Not any help, but just wanted to give you credit for your management of medications for a very difficult to control form of epilepsy. Barbara
Good for you...for speaking on your sons behalf...I know it suck to have to get "ugly" with medical issues, but YOU live it every day, and you know, as a mom, what is best for your son!
Hope you all are having a good weekend!
Ironically, Brock was prescribd the Banzel for his seizures and our neuro said it is the best at treating Lennox-Gasteaut syndrome. We had terrible luck with it, but wondered if you had ever considered it? I admit I don't follow your blog often....but just wanted to say hi.
Seizures are dreadful, but docs need to know that each kiddo responds differently to medications. Best of luck with your battles, AND good luck with your Cristmas cards!! :)
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