July 19, 2013

One year ago tonight, at this exact moment, Zaki had been asleep about an hour. I had given him his first dose of CBD (cannabidiol) I tucked him into his make shift bed on our floor where we had moved him to keep a closer eye on him due to having early morning seizures in which he would stop breathing as well as nocturnal seizures happening like clockwork every 2-10 minutes while he slept. That was unacceptable.

This was not a comfortable routine, but one I was used to. We had been battling his seizures for 9 years at that point.
The previous EEG showed subclinical seizures every 10 seconds while awake and 2-3 times more frequent than that while he slept. They were brief .5-1.5 seconds, but with that kind of frequency they were a major disruption to Zaki’s quality of life, learning and behavior. We had recently gotten a pulse ox machine which he hated to wear due to his sensory issues… but SUDEP and the fear that I would miss a seizure constantly ran through my mind. He had also started self-reporting “heart attacks”…possibly a new seizure type? Honestly it was the last thing I prayed for before going to sleep and the first thing I feared if I woke up in the morning before Zaki did. Would he still be here with us? Did he make it through the night? Morbid. But our reality. That was unacceptable.

Zaki had drifted into a solid sleep. I lay next to him staring. The seizures should have stared by now I thought. I looked at my phone to see how much time had passed. Hmmmm….. His little chest was rising and falling. I continued to stare…. About 3 hours later I must have fallen asleep. I woke with a startle…he didn’t have any seizures… I know this because his seizures were brief. But the jerks were so strong I described them as full body electrocutions. Expecting someone to be holding paddles to his chest and hollering “clear.” That was unacceptable.

Over the years he has had peaks and valleys. But he has never had a peak last this long. We are now over 9 months seizure free. I will not stop telling his story. If you had watched your child suffer 500,000 seizures before the age of 5, been through 17 pharmaceuticals, ketogenic diet, and a handful of other alternative treatments to no avail, only to stumble upon a plant that helped…. You wouldn’t shut up either.

I heard this quote today:

“Here’s to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes… the ones who see things differently — they’re not fond of rules… You can quote them, disagree with them, glorify or vilify them, but the only thing you can’t do is ignore them because they change things… they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.” Steve Jobs
I love this quote. I don’t think of myself as any of those things. I think of myself as a loving mother who only wanted to save her boy. But I still love the quote. You cannot ignore me, you cannot ignore this. Our children should have the opportunity for a better quality of life. They deserve that.
The intractable epilepsy community is vast. There are 60 million people worldwide living with epilepsy. 30-40% of them do not get control with pharmaceuticals. After 4 pharmaceuticals fail them, they have a .8% chance of finding one that will work. Parents of children with epilepsy and adults with epilepsy alike should have the freedom to choose this option for their children or themselves.

To God be the glory. I am thankful for His guidance. For His protecting Zaki this long. I know many… very intimately that have gone on. Over 50,000 die every year just in the US to a seizure related death. That is one every 10 minutes. That is simply unacceptable.

I feel like Zaki is finally healing. Maybe we all will? Zaki is recovering. He has a lot of collateral damage from all of the seizures and medications. I am not sure what the future holds… but from where I sit – it is acceptable… it is more than acceptable it is absolutely fabulous!


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