I'm still trying to digest all that the doctor said. I'm still trying to digest all that my son told him. This is bigger than I knew. Much. Bigger. What I do know is I have a folder dedicated to all the appointments for tests that must be done in the next few weeks: MRI, Blood Test, EKG, 2 EEG's - and THEN we will meet up with Dr. Sutherling again and talk. Six weeks. Seems like a lifetime when you want your son to be able to get on with his life.
Did you know seizures could change and migrate over time? I did not know that. I find myself longing for the time when "Partial Motor" was the order of the day, and we could just call it an eye twitch. What Chris has described as an occasional warning to the onset of a seizure (sort of like an aura), the doctor is calling "Simple Partial," which then moves on to a "Complex Partial" involving his entire body, but does not render him unconscious. Chris describes it as his mind is racing and he is desperately trying to calm himself to make it stop. Of course, he can't make it stop. But he tried. In typical teenage fashion, he tried.
We discovered the backpack with his pipe and small stash of medical marijuana a few weeks ago, and of course, destroyed it immediately. The appointment with the new specialist had already been made. It seems we were all searching for a solution to a problem that appeared to be getting out of control. What was once under very stable control by the combination of 1600 mg of Tegretol XR and 500 mg of Keppra daily, had now morphed into a scary, constant state of uncertainty for our son. He tried to hide it. He finished his semester of college, but with a D- in two classes and a very gracious C from his teacher in the other. He was still driving, except on the days when his med side effects were too much to handle. But we noticed. Parents see these things, you know. It breaks my heart to even say this, but his eyes were dying. Not dead just yet, but dying. Once he moved home from school, it was even more evident. And we all knew something must be done.
According to Chris, he came across some information on medicinal use of marijuana for epilepsy on a website called "Stumble Upon," while studying abroad in London last fall (where he earned a 3.2 gpa, I might add). He did some research. He talked to people. He Googled. He tried it, making sure to obtain a Sativa strain that specifically helps with calming the nervous system. He felt relief, and argues still that it helped him. But the seizures did not stop completely like he'd hoped. The moments of despair and sadness still crept up on him. And the times he felt the calmest and most in control, we would describe as somewhat out of it and basically stoned.
He had put a band-aid on his broken brain, and it wasn't going to be enough. We are hoping beyond hope this new doctor has a livable solution.
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