I haven't updated this site in a while. I guess when things are going well, we're just living it and loving it.
Now that I have something to update, I kinda wish that I didn't.
Some of you are aware that Elijah's seizures returned in February this year. Just over 6 years after his last brain surgery. They started out as partial-complex (blanking out and staring) seizures. A month apart, and then a week apart and then every 1-2 days. Progressing in frequency and intensity, as his seizures have always done, historically.
He also started having larger, convulsive (tonic-clonic) seizures. He's only had 4 of those so far. 7 weeks apart, then 3 weeks, then 8 days- the most recent one was last Tuesday, and we are already getting so chill about it that he went to school after he recovered.
We've been waiting a bit to write about what's been going on, I guess hoping that there would be good news to share along with the not so good... And there is!
With the "thumbs up" from Elijah's neurologist, and the official medical authorization from his naturopath, we were able to start Elijah on CBD (medical cannabis) on May 20th! Since he's always been so resistant to medications, and has the VNS implant and done the ketogenic diet and 4 brain surgeries- CBD has always been next in our sights if the seizures returned. It's not easy to get, even in WA where it is legal for adults to buy it recreationally. But that's a whole 'nother rant for a whole 'nother blog.
At first, it almost seemed like the seizures were made worse by the CBD, but I am happy to report that as of this day- Elijah hasn't had a convulsive seizure in 6 days, and hasn't had a partial seizure in 10 days!!
I'm sure that we haven't seen the last of his seizures, but I don't mind celebrating little milestones in the meantime.
In usual Elijah fashion, he's handling everything like a champ. Before the last convulsive seizure, he was even able to call out to let us know it was coming before he fell.
So that's where we are. Thanks for checking on our boy!
Read the latest Journal Entry
4 Hearts • 13 Comments