Later in the week, Avery had a Neurology appointment with Dr. Feyma. In the beginning of September, we started Avery on a new med called Clobazam, This is in effort to try and reduce the number of daily myoclonic seizures, as well as the subclinical seizures she was having that we couldn't see. The plan was to add Clobazam, and then ween off of Topamax, a med she's been on for nearly 4 years. Topamax is known to significantly effect cognition and development. Some history- about 2 years ago we try to ween Avery off it, only to have significant increase in seizures, and 2 GTC's within a week, so we had to put her back on it, but agreed to it, at a significantly lower dose than before. So, at the end of Sept, we began weening Topamax for the 2nd time, we lowered it about a 1/3 of her daily dose, and then Avery got a respiratory infection/cold. So we stopped the ween until she gets healthier, today, she's still sick a month later, but slowly getting better, with the hope to start weening again soon.
Also something to note, Clobazam is a commonly used med for most Dravet kids, and it's only been available through Canadian Pharmacy, an out of pocket expense to the family. Unfortunately this is too common for most of the meds effective for Dravet kids, they aren't available in US, and families have to go through other resources, and pay out of pocket, some meds at the cost of a mortgage payment. The good news is, just last week Clobazam was approved in the US. Hopefully we can start getting it through our pharmacy soon.
We also discussed at the appointment that Avery has been having more twitches when she's been sleeping, seizure related? from her cold? from the Albuterol neb? we don't know, so Dr. Feyma has scheduled a 24 hour EEG on Nov 21st. to take a closer look. Keep you posted.
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