We went to Baltimore to see the neurologist yesterday. We talked about her current medication levels and about her milk allergy. Now I have to get with the pharmacist and see if any of her medicines are made with milk, because everything is, and if so we have to figure out what to do.
We asked a lot of questions and even submitted some the day before via email. We didn't come up with any solutions yesterday just more of an understanding that there's a strong possibility Cailyn has a metabollic/mitochondrial disorder and we have to get in to see a pediatric geneticist. I called the one he wants us to see today and the earliest appointments they are booking for is April and May. So hopefully Cailyn's neurologist can call and get us in earlier. He works closely with the geneticist already since they share 5 other patients.
We are going to try to lower her topamax again. Last time we were unsuccessful and she was miserable. Since then we have upped her two other meds so we are only going down .5 ml this time instead of a full ml.
She was very awake and alert for the appointment which was good. Usually she's either asleep or zoned out so he was very impressed with that.
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