Happy Thanksgiving!

Monday morning we heading up to Gillette for the 24 hour EEG scheduled a few weeks back. This EEG was scheduled to 1. take a look at how she's doing, and see if theres any change since March with the addition of Clobazam, and 2. observe nighttime "twitches" and movements she's was making more frequently soon after the clobazam was started.



Avery playing puzzles while they hook up the EEG

After the EEG was hooked up, it was hang out in the Hospital room while they monitored the EEG and video Avery for external signs. We had a good time, played LOTS of puzzles, read books, even watched a movie. 

We didn't spend the whole time hanging out in the room, Avery was unplugged from the monitor to stretch her legs and take a walk around the unit.

Tuesday morning finally come, and we sat down with Dr. Feyma to discuss the results of the EEG. We got some good news, First, the "twitches" we were seeing at night when she was sleeping were NOT seizures. They were just involuntary movements while Avery sleeps, something considered normal. Second, the EEG captured the subclinical and Myoclonic seizures Avery has everyday while awake, typically when stimulated or eating, the positive news was although those seizures were still there, and showing up, they were not as long of duration as shown in the March EEG. So, we are not making any med changes for the moment, going to stay the course, and continue to ween off the Topamax in hopes that Avery continues to improve.

With this news, we had a lot to be thankful for this Thanksgiving, and we had a great day with our families. Hope everyone had a great Thanksgiving as well.

Happy Halloween

Avery and Nick had a great Halloween this year. Avery dressed as Bella, and Nick as Mario, we headed out visiting a few friends, and ended up at grandma Jeanne's and grandpa Tom's to hang out, and hit the neighborhood. Cousins Marae, Harley, and Addison also stopped while we were there.

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.