This is a bit delayed, but we finally got Alex out of KKI and back to Oregon! He won’t be getting back on OMMP any time soon as his new home is over 90 minutes away from us, making daily administration impossible. For the moment, though, this is a good thing, as odd as that might sound….
While Alex transitions to a new home and new staff, it’s critical that his KKI behavior plan is followed very closely so we can see how well it works in a less controlled environment. They have reported a fair amount of behavior reduction, and we want to keep his world as stable as possible for a while to monitor continued improvements, backsliding, etc. Adding in cannabis at this point would be a huge variable that would make quantifying the behavior plan’s success very difficult.
If we had ever managed to figure out precise dosage, the right strain, and other factors for a consistent experience, I might feel differently. But with the unknowns around cannabis and Alex, dosing him right now would just be a wild card he doesn’t need.
That said, once things stabilize, we’re hoping to get him closer to us (or us closer to him, though we swore we’d stop trying to follow him around after having uprooted the family twice already), at which point we will absolutely be pursuing cannabis again. With so much research coming out in favor of medical cannabis, public opinion changing (about time), Oregon finally allowing dispensaries, and more states (including Oregon) looking likely to legalize fully by 2016, I think we would have a significantly easier time than when we first tried it.
Don’t ask us about the plane ride home, though. While the flight out was surprisingly uneventful, the flight back was a nightmare, and I hope the poor kid never has to go on a long trip again.
I have been keeping up with Alex’s story for a while now my son shows the actual same behavior to a t we live in nc :-/ idk what to do to help my child any advise?
I can’t really make any good suggestions. KKI seemed to help Alex some, and the cannabis probably could if we could figure out the right strain and dosing, but that would be even tougher in NC than it is for us in OR.
The only real advice I have is to fight everything that seems wrong. The insurance companies, schools, in-home services denials… everything. We’ve only recently discovered just how financially motivated the “no” answers really are, and when push comes to shove the parents (sometimes with legal help, mind you) tend to win .
I recently saw the youtube video of your news interview, at the beginning of the Video is showed and stated that your son had growths of some kind in or on his Brian that was causing his autism. I was wondering about this because some similarities in my own son only information I get from drs is they are cysts and everyone has them. But was wondering what are the types of growths your son has?
Alex’s growths come from a condition called Tuberous Sclerosis, and are significant masses. I don’t know anything about brain cysts or whether they’re normal, but in Alex’s case he has many other symptoms beyond the growths in his brain. But I’m suspicious of most doctors at this point, thanks to all our bad experiences, so if you don’t think your doctor is giving you good information, I urge you to seek a second opinion.