Friday, July 16, 2010
Today has been an interesting day for Reagan. She slept in. I finally had to wake her up at 10:30am and she was not happy about it (never wake a sleeping baby...words to live by). She's been doing this coughing thing when she wakes up, I don't know if it's her trying to clear her throat or what, but I don't like it. Coughing makes me nervous. She only does it when she first wakes up (or choking on something during the day)...but it still makes me nervous. Then we headed into town to see the movement disorder specialist. Reagan was kicking up a storm in the car but once we got there she calmed down a bit. I liked the doctor. She said that Reagan's chorea is either Syndeham's chorea, caused from strep infection or rheumatic fever, or just another neurological quirk. She took video to review with some other movement disorder specialists and ordered a ton of bloodwork. She recommended a few treatment options...1) try a short course of steroids (which can sometimes stop the chorea for good, but may do nothing while taking a shot to her already weak immune system) 2)try something called Fluphenazine (which has been known to work but also has the potential side effect of tardive dyskinesia, an irreversible worsening of the movements) 3) try tetrabenazine (known to have a side effect of sedation and apparently very expensive). In my opinion the second one is completely out of the question...we don't need to make matters worse. So then it's between the other two. I like the idea of the steroids stopping the movements for good (although that seems almost too good to be true). But we really just need something to use on an as needed basis, when the movements get out of control and interrupt daily life (like preventing her from sleeping). The doctor isn't sure if the tetrabenazine will work like that (usually you have to build up a level of these meds in order for them to work effectively). Where does that leave us? I don't know. I told her I wanted to think about it. I'm interested in seeing how the bloodwork comes back. They took 8 tubes of blood...I think that's a record. Poor thing. She's so good though, not a peep out of her. On our way home she fell asleep in the carseat and once home she continued to be groggy. She'd be asleep one second and awake the next. She kept making these sweet little cooing noises. She's such a cutie. I didn't even think about it til now, but that's a lot of sleeping today. And to top it off, she fell asleep early tonight. Not sure why she's so sleepy. Hopefully she'll still sleep tonight. Please keep it in your prayers that she stays happy and healthy.