Thursday, November 09, 2017

The straight dope on seizures and...dope.

Like me, I know a lot of you have kids (or other family members) suffering from seizure disorders of one type or another.  Like me, I know you've most likely been prescribed a number of different treatments over the years - switching from tegretol to phenobarb to lamictal and back again, changing doses, checking blood levels. 
Like me, you've still been subjected to seizures either frequent or occasional, whether your patient has been medicated or not.
Some meds work great for epilepsy but not so much for non-specific seizure disorders.  And sometimes the type and symptoms and strength of the seizures changes over the years.

My boy has had seizures all his life - thankfully not TOO frequent - but he always had just as many ON the meds as he did we made a decision several years ago to stop medicating him since it didn't make any difference to the frequency or severity.

The last maybe 3 or 4 years Josh's have been getting a little more frequent but still irregular...sometimes once or twice per month, sometimes once every two months.  It's very unpredictable.  They have gotten more severe though, his body stiffens and locks down and as you know back in June he actually gave himself a compound fracture during a seizure.
Granted, it was a weak spot where it had been cracked in the NICU by a nurse changing his shirt, and it was his "bad" arm (due to the cerebral palsy his right side is weaker and smaller and he doesn't really have any real control).
Plus it's healed all crooked and weird because they feared his bones too brittle to put any plates or screws in. So there's that.


I'm guessing most of you who have to deal with seizures have seen all the 'miracles' happening with Some Kind Of Oil Made From Weed, or Cannabidiol oil.
Like me, if you've heard of it or seen the videos crossing your facebook newsfeed, you've checked it out.
Like me, maybe you were totally confused by all the information.  Hemp oil, CBD oil, with THC, without TCH, what kind of dosage, pills/liquid/vape oil...DOES IT WORK? Which works best? Dosage for an 85lb manbaby? Will I overdose him? Is the OTC kind safe?

There have been a few small studies so far that indicate that while the CBD doesn't completely eliminate seizures in all patients, it does appear to lessen the frequency up to about 40%.
If your kid is one of the kind that has several seizures per day/week/month, 40% is a SIGNIFICANT number.
My expectations and hopes were lower - basically I was just hoping and praying that best case scenario would be to lessen the severity so they weren't as hard on his little body.

So I read and researched and asked & consulted & had friends in MJ-Friendly states ask around at their favorite dispensaries in case YOU are as skeptical about trusting random testimonials as I am.
I will tell you my personal story, since you already know me.

We're using the over-the-counter CBD oil in a suspension of grapeseed oil.  There is NO THC in it.
It is NOT Hemp oil.  You canNOT overdose on it.  Side effects are minimal and reported mostly a little drowsiness, dry mouth and in a few cases, diarrhea. 
Joshua has not had a seizure since he's been taking it...
...for 10 and a half weeks now.
No discernable side effects.
I give him half the recommended dosage, which is one dropperful per day.
Maybe it's still to early to tell whether it's just coincidence or the oil that is helping. I'm open minded.
But he does have "tells" and signs that typically start a day or two before a seizure.
He's had those signs a few times over the past 2 months...but no seizure following.
YES I KNOW I'VE JINXED IT NOW and he'll probably have one today.
If he does, I am hoping it's less severe.

NOW YOU HAVE A TRUSTWORTHY (hahahaha! well, you know I wouldn't mess with you about something as serious as this) TESTIMONIAL.
And I will keep you updated.
I'm thinking of taking this for myself eventually, as it is said to be good for chronic pain, but it is a little pricey at about $36 for a small bottle.

The place we get the oil is The Health Patch  - formerly Nana's Pawpaw Patch - in Midwest City. They have a couple people who've trained in holistic & naturopathic treatments and I can tell you they are VERY patient and thorough in answering questions and printing out info. Super nice, super helpful. (No, this is not an advertisement for them - but I do highly recommend)