I've mentioned it before, but we've started John on cannabis. It is legal in Oregon, and we are properly licensed to both administer it for John and grow it. Of course I don't have the foggiest idea how to grow it and I hope I don't ever have to, but if it proves helpful I think we'll end up on that path. The problem is that you cannot find the correct strain in any of the dispensaries in Oregon. What we want is a very high CBD to THC ratio. It's the THC that makes you high, and so this is what everyone wants. A CBD only strain has little value for anyone except those suffering from seizures. There just isn't a big enough market for the growers. Plus, it is apparently a hard strain to grow and is very expensive.
So, for now we are giving John a 1:1 ratio of CBC:THC. It's not ideal, but we're actually hopeful that the THC might help with his hyperactivity anyway.
We get it from a local dispensary already in liquid form (it comes in a honey/glycerin base). We've always given him his pills with honey anyway so it was pretty easy to add a little of this to the mix. We are starting slow of course, and haven't seen any improvement yet. At least we don't think so. John does NOT have as many daily seizures as before but the ones he does have are big. Not sure if that is an improvement or not.
Hi Yoshi and David!
ReplyDeleteI was just thinking of you guys and found this bog about John. You have been
doing so much with him- you are clearly experts on therapy options now!
John has gotten so big. And even more coordinated than he was when I knew
him!
I just wanted to be sure that you know about the AAC specialist at
Providence (where I work now). I'm not sure what kind of language therapy
John is getting right now, but Beth Bertoti at Providence is great at
helping connect kids to AAC (and can determine with parents what is most
functional for kids).
http://oregon.providence.org/patients/healthconditionscare/pediatric-augmentative-and-alternative-communication-clinic/Pages/default.aspx
I'm sure you know about the Swindell's Center too- it's a great resource
for parents (support groups, presentations from various specialists, etc):
http://oregon.providence.org/patients/programs/swindells-resource-center/Pages/default.aspx
Best wishes to you all!
Becky Zeien (SLP from way back when you worked with Anna Dvortcsak)