Wednesday, February 18, 2009

St. Louis Trip to Dr.

Well, I wish I could say that today was fantastic. I can't. I liked the doctor, but I don't think he has seen this "thing" either. He did take her vitals and check her reflexes, along with doing the push/pull test on the muscles and eye/finger thing. I'm not sure what they are called, but know why they do them. She passed them. Her back was killing her after the 2 hour ride up there. I even gave her the front seat to lay back and put her feet up. She was in a "mood" in his office. She was annoyed that he chatted with us instead of her. She felt like he treated her like she was 5. He is a pediatric dr. Anyway, we answered a lot of questions and he read over Dr. Patel's notes. He jotted things down as we talked. That pretty much sums her visit up.
He gave us a lot of papers on dystonia, and a prescription for dopa responsive dystonia. It will be on a trial basis. We will start this med on Saturday, in case of bad side effects. She is already missing quite a bit of school, don't want to add to it. He also ordered blood work> yep, her favorite! and urine tests. Seems it will pin down or cancel out certain types of dystonia. Continue PT if you want, if she enjoys it. It does seem to help her walk. We are also to call The Movement Disorders Clinic at Washington U/Dept of Neurology and make an appointment. We can cancel if we don't need it. There you have it. Our day. Oh, one more thing, seems they don't have enough information on GARDASIL to know. He said a lot of parents come in asking about it just like we did, because of all the information on TV. I do think he copied 2 papers from the National Vaccine Information Center that I had. Was it a wasted day? No, but I think I was wishing for more. Like maybe he had a patient where he had seen this before. He did say there is not a test you can do ~ that will confirm or deny that it's dystonia. So, that's about it.

Cancun. He said play it by ear, she will know if it's too much. So, you know we are going. : )OR if she's having a bunch of episodes we shouldn't go..duh...and I'm REALLY hoping we don't move back to that point!! She also made the decision on the way home that she wants to try cheer practice tomorrow. She REALLY wants to do the senior dance. I'll call George R tomorrow and ask. She wants to get her life back to normal, the best she can. I get it. But, sitting in school is difficult, so those hours are limited. Here's to hoping the medicine works! Her next appointment is March 6 with Dr. Patel. Her follow up with Dr. C in St. Louis is March 22, day before we leave for Cancun. Dave picked that day so we can stay in a motel and leave the next morning, our flight is early. That way, she won't have so much sitting all in one day. We all need that 5 day break~ in the sun, on the beach, not a care in the world, regardless of where things stand when we leave. That's my way of thinking......besides, it's already paid for. Have a good day> keep the prayers coming her way.

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