autumn update

It has been far too long since I last posted, so I thought it was time to give you a quick update.

Calvin recently went nearly five months without having any seizures. A low-grade fever on October 1st triggered a breakthrough seizure, and then he had another seizure twenty-five days later. My hope is he will go back to having longer seizure-free stints, which I attribute to his use of the drug Xcopri (cenobamate).

In the past twelve months, Calvin has had only four seizures, which is down from fourteen last year, forty-plus in 2022, and over 100 in 2021 when he started taking Xcopri. So I have no doubt that the medicine is working to limit his seizures.

What has not changed is Calvin's impossible restlessness. I believe he suffers from a condition called Akathisia, which people can acquire from the use of, and withdrawal from, certain drugs. My understanding is that benzodiazepines can cause this condition, but we will be taking Calvin to a behavioral health specialist to see what they have to say. In the meantime, we struggle daily with Calvin's inability to sit still for minutes if not seconds at a time.

All in all, however, Calvin seems to be better understanding us and is more cooperative when we take him places to walk for short distances in less familiar places, which is a huge improvement over the stubborn boy who often insisted on trying to drop to the ground every few steps. I can only conclude that this improvement is due to having fewer seizures.

Another upside of Calvin having fewer seizures is that he misses less school, and when he goes to school I have the freedom to go for long runs between ten and fifteen miles, which I love for the mental and physical health benefits those runs offer me.

That's all for now. Thank you for you continued concern, love and patience. I'll try not to be such a stranger.