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life with Trevy

Posted Jan 30 2014 12:00am

 

 

Last Friday we finally got his lab results in.  I’d called the neuro asking for them because he’d had a handful of seizure-ish events at school.  Events large enough that he was taken to the nurse and a call home was placed.  Twice.  My stomach drops…DROPS…every time I see that number on my phone during school hours.




The labs revealed that his seizure med levels were DOUBLE what is considered safe for him. His neurologist felt that a BP drop like event was absolutely linked to the overdosing.  Two Fridays ago, we were *this* close to calling rescue for the second time in seven years of catastrophic epilepsy.  His face blanched right down to white lips.  He zoned out.  Non-responsive.  And that little voice in the deepest regions of my gut, where the very darkest of epilepsy truths live, was screaming that he was dying.  And OMG what are we going to do!!!  The rational side of me saw that he was still breathing and thought let’s give it a minute to see if it passes.  After about five, it did.  It’s no wonder I see a new line every time I glance in the mirror.

 

 

I called his neuro.  Which prompted the lab slip.  Which revealed the dangerously high medication levels in his system.  Which is why she gave us a plan that involved an aggressive wean. SO scary for a mom who has had it beat into her brain that you should NEVER miss a dose.  Never mind more than one. Honestly, it's been baited breath for a week now.




As a result of the withdrawal from weaning the med down into a therapeutic range, Trevor has been miserable.  Just SO uncomfortable in his own skin.  And unhappy.  He's had massive sleep disturbance, mood swings, a giant spike in his ADHD symptoms and seizures for that special little cherry on top.

 


This morning, I just sent him bawling his eyes out with his daddy.  They are off to get the next installment of labs. He doesn't even know yet where he's going. He's just sad.  And telling me he feels sick.  Because that comes with the messing with his epilepsy med territory.

 

 

Only, I haven't heard that all the moodiness and restlessness is such a common side effect of MMJ ? Hmmm?

 


Anyway, we're hoping like crazy that he's back into a safe range. And also, that all of the sleep, moodiness, impulsivity spike, seizures...junk...restabilizes.

 

 

And in the meantime, I’m scheduling an appointment with a doctor to discuss moving forward with medical marijuana.  Because we live in a compassion state.  And for the love…if there is a profile for who fits the need for some compassion…I think Trevor just might fit it.

 

 

…danielle

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