Hello family, friends and fellow fighters,
Today is one week exactly since we completely stopped Diacomit for Nova. The reason we chose to do this is we were not experiencing any more seizure control than we had while just on Fintepla, Onfi and Epidiolex. Along with not having better control, our main reason for stopping is we were seeing some very intense behavioral issues. Nova was banging her head against walls very aggressively, slamming her body against the walls and ground, pinching and biting herself and just overall being very frustrated and aggressive every single day. We have been told that Epidiolex as well as Diacomit increase Onfi levels- which makes sense, because Nova’s were VERY high. Stopping Diacomit would lower those levels and balance the side effects of Onfi to be less intense.
Only one week off, and Nova is already doing so much better. She still does these behaviors, but it is so much less often than before. I am so thankful this has already helped so much. She is so much happier, and we haven’t experienced much change in seizure activity that isn’t explained by something else. In particular the past few days Nova has had a very low appetite. This is likely due to stopping the Diacomit, so we are hoping it will get better in the next week or so. When Nova’s blood sugar is low, that increases her myoclonus (if you personally know us we usually refer to this as “twitching”). Seizure activity also lowers blood sugar. So, it’s been a back-and-forth cycle. Today was much better though. We focused on giving her food we know she can’t resist (yogurt, fruit, pizza and lasagna), and she did so much better! At lunch she had 2 whole pieces of pizza, a yogurt parfait and some goldfish. The rest of the day, her myoclonus was almost nonexistent. At dinner she finished her whole plate of lasagna. While this isn’t the “healthiest” foods, when Nova is struggling to eat we do whatever we can to get some decent calories in.
Overall, for our family, I am so thankful we decided to stop this medication. It didn’t DIRECTLY do anything bad for Nova, but it increased the side effects of other meds and didn’t do much in her favor for seizure control. Our goal is always to balance seizure control and side effects. Full seizure control is unrealistic for a kid her age with Dravet, so we really try and consider medications heavily and try and make the best choices for her.
“Children are a heritage from the Lord, offspring a reward from Him.” Psalm 127:3
Keep Fighting.
Addi Epilepsymama
