Hmmm... Where to start? I guess I'll just dive right in. After months and months of Michael trying to transfer his job to Colorado we thought, "Well, maybe there's a reason this isn't falling in to place despite our efforts."
That's the small thought that led to a grand discussion and ultimately, the decision to stay in Oklahoma. At least for the foreseeable future.
Our decision was not made lightly but once it was spoken aloud, there was a wave of calm that went through me. It felt like I had finally released a breath that I had been holding in for a very long time.
Rayleigh is the most important thing in my life. Do I think it would be beneficial for her to have different options in CBD oils and access to THC oil to use as a supplement to the CBD oils? Sure. Do I think the answer is to uproot and move to Colorado for their supply? Not right now. We have seen some great stuff from high CBD oil use. In fact, Rayleigh is currently taking Charlotte's Web Hemp Oil. She is still having 6-10 complex partial seizures a day, they are still wearing out her little body, BUT she is having random days of only 2 or 3 of these seizures. And, no joking, her eyes are so much more alert. The girl is AWAKE when she is AWAKE! We just recently increased the dose (you have to titrate your way up to an optimal dose slowly) and we have seen a little bit of movement coming back, mostly wiggling her arms or moving her head!
So, I'm not sure if high CBD oil is going to be our answer for seizure control or not.
But I'm going to keep on trying until I have reason to stop.
But I'm going to keep on trying until I have reason to stop.
To everyone that donated toward our Colorado move: THANK YOU! You have such loving hearts. That money was set aside and has been/is being used to buy the Charlotte's Web Hemp Oil. Each bottle is $250 plus shipping, so your help is soo appreciated!
Oklahoma recently passed a bill that allows only high CBD oils to patients under 18 with intractable epilepsy. Rayleigh fits the criteria (duh.) and has her neurologist's blessing. I've got some issues with the new law, the biggest being: How the heck are the patients to get the oil when it's still federally illegal for the providers to ship any form of medical cannabis outside of their state?
{Charlotte's Web was classified as Hemp Oil this past year and is currently shipping to all 50 states under that pretense. All other high CBD medical cannabis oils that I know of are NOT shipping nor classified as Hemp.}
After Oklahoma passed the bill OU Medical Center announced that they will begin the Epidiolex trial. This is for a big pharma version of medical cannabis, it is very high in CBD and extremely low in THC. I have heard CDKL5 success stories from the clinical trials of Epidiolex in other states so I am going to contact the coordinator and inquire about getting Rayleigh into the study. I will not put her in the study if it is controlled with a placebo. Why would I take her off a for sure high CBD hemp oil to put her in a study with the possibility that she gets the placebo?
In closure, we have a plan with her neurologist to wean her Banzel (one of her seizure medicines). Once Banzel is out of her system we will start either Fycompa or Sabril. She's been on Sabril before with good seizure control but some side effects, she's never been on Fycompa and while it's only been available for about a year I'm hearing good things. Decisions. Hopefully the medicine that we decide on and the CWHO will give Rayleigh enough seizure control that we can get back to weaning Onfi (the monster seizure medicine).
Thank you for your patience and love while we were in limbo about the move.
Oklahoma, you have a strong hold on this family!
And now, some pictures from the past year!
