Two and a half weeks. The time that's elapsed since Michael's previous seizure. The streak prior was a glorious eight weeks. This is the shortest streak since we began our CBD journey last September. I'm not disappointed, discouraged or tempted to change course in any way.
Last night Mike went to an Imagine Dragon concert. He was on the floor front and center. He had a wonderful time. He went to bed after midnight. This morning I thought about waking him at the usual time but opted to let him sleep later.
Then--- I heard the familiar guttural sounds and met Katie in the hallway on her way to get help. It was an intense tonic seizure but shorter than usual, lasting about a minute with an even briefer post ictal phase. Michael was alert enough to swallow his many AM pills within 10 minutes. He slept quietly and woke and came downstairs to breakfast a half hour later. He was taken aback when I told him he had a seizure. All good signs.
I'd prefer that my son never ever have another seizure. I'd prefer we could wean him more quickly off the despicable drugs with a myriad of "side" effects and lack of effectiveness in controlling his seizures for a quarter of a century! I'm still mad as hell that at least one third of those with epilepsy can't be helped by what modern western medicine has to offer. I'm pissed that politicians and bureaucrats are getting in the way of thousands of families wanting access to medical marijuana--- perhaps the last and best hope for their children. I'm enraged by the smug neurologists who have the gall to suggest that parents may be exaggerating the effects of CBD because, you know, they're parents who want this to work.
This I know because I am the mother, because I've lived with this 24/7 for 25 years, because I've seen firsthand the effects of thousands of seizures and observed the physical and cognitive deficits caused by the drugs so readily piled on over the years. This I know because we have weaned off one drug, have reduced two by a third and are halfway through the wean of another. This I know because I see my son standing upright on a paddle board taking in the beauty of a nearby lagoon. This I know because Michael relates repeatedly that he feels he's "coming alive".This I know for sure--CBD is working. We will stay the course.
Well it sounds to me like Michael must have had an AWESOME time at the show. If we have to live with seizures, we deserve to have a life too. Quality of life is EVERYTHING. Every success is everything. Love you guys.
ReplyDeleteThe most effective doctors are the ones who listen to the caregiver and listen to the patient. GO MICHAEL!!!! And GO MARYLOU!
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