Conversation with the neurologist
Cathy talked to the neurologist yesterday. Maria is still having many episodes every day even on the medication. Each time we up the Depakene dose she has fewer seizures for a couple of days then they start up again. Cathy is reluctant to up the medication anymore because Maria has become…well, not sleepy exactly but lethargic. The doctor said that the temporary seizure suppression is a sign that the medicine is working so he wants to up it a bit more but told Cathy to start tapering off the Trileptal.
She also talked to him about the seizure emergency medication which I guess we never talked about in the blog. As our regular readers may remember, in July when Maria was first diagnosed with seizures they were so concerned about shutting them down immediately that they gave her Valium in her rectum. For home emergencies you can even get your very own rectal Valium kit! During our first visit Cathy asked him whether we should have that and he said that we should have some kind of emergency dose, but that there are also dissolving wafers that are administered orally. That idea seemed better.
The problem is we aren’t sure what is an “emergency” so Cathy asked him for advice. He of course couldn’t just give us numbers since every case is different, but we should be using the additional medicine any time she’s having a bad day with lots of seizures. We can all certainly think of past days where we should have and we’ll be more likely to use it in the future.
Maria’s episodes are still a mystery though. We’ve long known that some of them aren’t actual seizures but clearly deliberate and it’s hard to tell which are which. Even some of the more serious ones we can distract her out of, and you absolutely can NOT distract someone out of a seizure. Part of our worry is that none of them are seizures and we’ve been drugging her for nothing.
The school has been trying to get in a vision therapist and one finally started this week. She is, like everyone, concerned about her seizures. She thinks Maria should be going to preschool at Foundation for Blind Children because they can cater to her needs better, for example creating a quite environment where she is less likely to have seizures. We don’t that’s necessarily a good thing. As we’ve mentioned before, FBC preschool is basically all day so Maria’s at-home therapies would probably just disappear. Besides, it’s a tricky balance between catering to her needs and enabling her disability. We feel the public school strikes a better balance to prepare Maria for real life. Going to the FBC wouldn’t be a bad choice by any means but, especially now that Maria has adjusted to school, wouldn’t be the best choice for Maria.
She is *still* congested even after antibiotics. I think what probably happened was that there was a cold and allergies together, one bringing on the other, and the allergies are persisting. It’s also possibly she could be aspirating, especially during these episodes, but the pattern really doesn’t fit that. She was supposed to have her barium swallow next week, already rescheduled because of this congestion, but that’s pretty certainly not going to happen so it will get rescheduled again.
I don’t think she has anything much coming up until Thanksgiving, and then she’s going to be on the road for a couple of weeks. After Thanksgiving we are going to stay on with her grandparents so Cathy can attend a class for work and the week after that we head to Salt Lake City to have Shriners Hospital examine her. We aren’t sure if we are going to be able to come home in between or not.