Since Griffin is leaving for college in the fall I asked him to pick the summer vacation this year...what would he like to see? He said he'd never seen the Rockies. And that's how we ended up in Colorado this week. I don't know if part of Griff's curiosity had to do with the legalization of marijuana here, or if it was just about the incredible scenery: (my cup of tea this morning)
But I was all for it because I have so much I want to learn about cannabis and how its various products might help Cesare. New York has just legalized medical marijuana. I contacted his doc at NYU and asked to get rolling on that. She responded by email, very briefly, that they were not up and running yet. I don't even know what that means exactly. So I am happy to be in a state with lots more experience in this area. I love Orrin Devinsky at NYU and I can't pick up a journal or meander about the web without reading a cautionary article from him about the relative unknowns of using cannabis to treat epilepsy. When hoards of families moved out here to Colorado Springs to access Charlotte's Web for their epileptic children, Dr. Devinsky was featured prominently on the front page of the NY Times imploring families to slow down.
Nevertheless there is much to learn about what is out there for Cesare, and unfortunately, not much guidance. Given that I made all of these arrangements months ago, one would think I'd have done my homework before flying out here. But I did not, not enough anyway. Frankly I don't know where to turn. I rented this house, near Colorado Springs, hoping to somehow bump up against the epilepsy community here. (And if anyone from that community is reading this, I hope you'll say hello!). I joined a Facebook group for parents wanting to learn more about CBD oil for their children. The folks there have been very supportive about exploring what could be helpful.
What I understand is that three elements extracted from cannabis have healing properties: CBD (cannabidiol), CBN and THC which is the psychoactive substance in cannabis. Mary's Medicinals provides a lot of info about their products and what extracts might aid what ailments. I've learned that varying combinations of these elements can address different kinds of seizures. Mary's Medicinals makes transdermal patches and gels that have different ratios of CBD to THC. Without a doctor's script in Colorado a visitor like me is relegated to buying only products that are deemed "recreational". Inexplicably, Mary's Medicinals can be found on both sides of some of Colorado's dispensaries: the medicinal and recreational. And so I learned that I can purchase all of these extracts and potentially use them in combinations and very low doses to see what effect, if any there might be.
Doing so without a doctor's oversight makes me nervous. Finding that they help and then not being able to access the products once we return to NY makes me crazy. Dr. Devinsky recently wrote that families seeking treatment for their children with epilepsy should not be discriminated against based on their zip code. Right on. The legalities of providing my minor son with these extracts, and the prospect of getting them home with us is mind boggling. I have read that CBD extract is largely from hemp and no more illegal than buying any hemp product.
We're not just spittin in the wind here. Cesare has tried diets, IVIG, a dozen meds, the Transgeminal Stimulator and seven cranial and brain surgeries and still seizes almost daily. If he's not a contender for a remedy, no matter how controversial, that could bring him some relief I don't know who is.
We have a lot to think about before we leave the land of hope. Wish us well.
Lots of luck to you. I bought some CBD oil from a recreational shop in Denver (Cibdex was the name brand, I believe) to try for my son. It was tough; no guidance for dosage or anything so we were flying blind a bit. A two week trial did not help - if anything, I think his seizures were a bit worse - more frequent, and severe. Our doc here in NM told us not to give up - it might worth trying a different strain in the future. Even though medical MJ is legal in NM, the last time our neuro looked into it, they wouldn't allow it for kids. We were lucky in that it's just a drive for us, so getting it home isn't the problem, but I sure would love to try Charlotte's Web. I'm hoping it will get exported to NM soon, and our program allows it for kids. By the way, we also tried hemp oil, available online from Dixieland Botannicals - it wasn't helpful either, but may be worth a try for Cesare.
ReplyDeleteThat's helpful info, Jessica, not to give up due to the strain from which the oil is made, the relative dosing etc. We really should not have to fly by the seat of our pants.
DeleteI hope that Ces can get some relief soon. You shouldn't have to invent the wheel yourselves (dosages etc), but it's only important if it works for HIM. Doesn't matter if it works for 80% of some population or other...
ReplyDeleteYou're so right. Hard to know what element affects him. Could try product which could help but on a day he ate something that triggers him I could confuse the source of the seizure. Scientific studies do have a place...but every patient with epilepsy is sooo different.
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