I wrote about Caleigh having Dystonia back in January. At that time the doctor gave us a prescription for Artane. We filled the script, Caleigh's tummy took a turn for the worse, we hung out in the hospital for what seemed like weeks and came home with TPN. So we never actually started the Artane.
This week we had our follow up appointment with the neurologist. We talked about the Artane and other meds that help with Dystonia. I have concerns about Artane because of the intense side-effects. Toxic Psychosis being just one. I went into the appointment wanting a definite number of kids taking Artane successfully and not running around like crazy children. He assured us that Artane is his number one med for Dystonia and he has a ton of success with it. He was convincing enough for me and I agreed to try it.
While we were there we talked about Deep Brain Stimulation surgery as well. I briefly brought it up and I'm not even sure why! Curiosity I guess. Our Neuro said that Caleigh is an excellent candidate for the surgery and that her type of generalized dystonia is the type that is most successful with the surgery. We're talking BRAIN SURGERY here!! I kinda shut down at that point, grabbed Caleigh's head and said "not now." He then reassured us that even if he wanted to do the surgery and we wanted it too; that they don't even consider it until the child is 7 years old. Great, discussion closed...lets move on.
So we made it home and made sure that the Artane that we had filled back in January was still good and then gave her the first dose that evening. 3 hours later Caleigh was still awake, gagging, retching and crying. I finally got out the iPad and she told us that she felt sick and her tummy hurt. I asked her if she needed to throw up and she said yes. So we decided to give her some tylenol to calm her down a bit. It did the trick and she fell asleep. The Artane only lasts 3-4 hours at peak. So that could have helped too.
The next morning I called the neuro office and we brainstormed the issue. We decided to try the pill form of Artane instead of the compounded suspension that the pharmacy makes up. The suspension has a lot of artificial sugars, colors and flavors to make it taste better. That doesn't matter for Caleigh because we are giving it to her through her button. So by Wednesday we started the pills and she hasn't complained at all.
We won't be up to the full dose until the end of February 2011 if all goes well. It's a very very slow increase and that helps deter the side effects.
So things that we have noticed just in the last few days is that Caleigh is making more sounds and actually is saying a few words. She said Daddy the other morning twice during our school lesson. Repeating what I said. She also told the OT "I do" I do" when she asked her if she wanted to roll down the wedge. She does say "yeah" for yes and "uh uh" for no. The words are coming more and more. They are still not very consistent but it is getting better.
After the 3-4 peak hours on the med I can tell that it is wearing off. Caleigh starts grunting and pushing and basically becomes really dystonic while coming off the med. Over the next few weeks we will be adding a noon and bedtime dose so hopefully that will fix the sudden drop that she is experiencing.
I'm trying not to get my hopes up too much. So who knows if it will work or if Caleigh can tolerate it.