Wednesday, July 22, 2015

The Shortest Streak

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.

Sunday, July 5, 2015

Starting Over

So... hopefully tomorrow morning we'll be saying " this is day one of another seizure- free streak" or some variation thereof. Today I was contemplating what I'd do all day after I managed to haul my lazy butt out of bed. Then, even though I was hearing aid-less , I heard familiar rumblings down the hallway and once I finished my race to Michael's bedroom---well--- there he was face down on the mattress in the throes of a damn seizure. So our 8 week streak is over. I sat on Michael's bed, scrunched against the wall looking at the clock, waiting for the tonic movements to stop, watching his lifeless eyes hugely dilated, holding his hand---waiting. It only lasted a minute that I observed. His heart rate slowed, his breaths became less labored, more regular, he settled into a pretty peaceful sleep. Katie took my place on the bed---exactly where she was when I walked in the room! We'll have to practice more "get helps", I thought. These streaks of 8, 9, 13 weeks have made us somewhat complacent. Mea Culpa!
I didn't cry. I didn't feel discouraged. We didn't have a lot of streaks like this in the years before CBD oil. We certainly weren't able to reduce the miserable pharmaceuticals the way we have since being on CBD oil. We did not have the brighter, more aware Michael we see far more often these days. We're not where we want to be, but we'll take this as we patiently make our way.
We'll take this!