Hey friends! First off, I am sorry for my venting last week-sometimes these things are just hard! My hope in sharing the hard times, is when another parent is up researching instead of sleeping and their feeling alone- maybe they can see that it’s okay to be sad and angry sometimes. Getting all of those feelings off my chest gave me some clarity on next moves. We were able to schedule them an appointment at Nicklaus Children’s Hospital in Miami-I actually have seen REAL PEOPLE with Dravet who go here! Their appointment isn’t until May, but they did say do to the girls’ frequent seizure activity it may get moved up. This doesn’t necessarily mean we are officially switching neuro providers, but we are going to go in for a second opinion and see how it goes.
We FINALLY got some movement on Nova’s myoclonus! I know if you’ve read all my posts you’ve probably seen me post about Nova’s previous experience with Depakote/Valproic Acid. While her past experience was very scary, there were a lot of other factors happening. Depakote seems to be most people (and doctors) recommendation as “best” medication for myoclonus specifically. So, we very cautiously, are trying it again. We are starting on a slow journey to her full dose and doing lab work weekly to check on how her body is handling it. While I don’t think this is the magical answer, I am hopeful it will help enough that Nova can gain a little bit of her quality of life back. About a week ago she got to her full dose of Fintepla, so I really really hope that she can see some relief soon. We were able to play outside with chalk for 15 minutes the other day! This felt like the biggest win in the world!
Today Miss Thing had quite the knarly fall during one of her myoclonic fits. She got her head pretty good, and me being my overprotective self, called the ambulance and we took her in just to be safe. Thankfully, she didn’t need any stitches and has been acting great so she looks to be doing well. They also gave her a dose of rescue meds to get her through the night. (Sidebar) We have the most amazing EMTs in our area. There are a couple who remember the girls and know their story- that truly makes the biggest difference. Having that little weight of doing the full run down of their history taken off my shoulders means the world, especially in scary moments. I can’t say how much I appreciate the people we’ve met along the way that truly care for the girls.
Denver has been seizure free for a few months, which has been amazing. (I’d like to note that in my previous experience with Nova, this is pretty typical around this age and then things get a little crazy.) We got labs for her as well and her Onfi levels were elevated, so we just decreased her dose today. That may affect her seizure threshold, but we will see, and we are prepared. She also had her 15 month vaccines on Tuesday, and previously we had just done a 48 hr clonazepam bridge and Tylenol/ibuprofen rotation for that time. However, today she was running a 100.2 fever and after consulting with her neuro we decided to continue that bridge and tylenol/ibuprofen for another 48 hours. This will be the game plan for vaccines moving forward as well as bridging the day prior to prep her. I feel much better about this. Her poor head drops were pretty bad for a bit today. I am hoping we can get her nonconvulsive seizures under control soon as well.
I feel so good about where we are at with the girls and I am so glad I made that post last week. It really pushed me to find some more solutions for them. Please remember November is epilepsy awareness month- wear your purple and let everyone know about Dravet! We love you all, thank you for your support! Please, if you need advice, to vent, to share experiences, or just want to say hi- email us at info@warriorprincesses.org or DM me on IG or Tiktok @addiepilepsymama
Keep Fighting,
Addi Epilepsymama
