Tuesday, January 21, 2014
Testimony I Would Have Given at Kentucky's Senate Committee Hearing on CBD Oil
I intended to sign up to testify at the Senate Health and Welfare Committee hearing for CBD Oil on January 15, 2014. However, I wasn't able to put my words together in time on account of my recent cancer diagnosis, work, and managing Alex's regressions. A week has passed but this unspoken testimony sticks in my brain like a splinter, so I've decided to bare it here. Thank you for listening.
Alex was born a healthy baby, but by age three there were undeniable red flags. He was so high functioning, though, that the professional evaluating him came back three times before she would even render a diagnosis: Autism. Therapists told us Alex appeared to be a genius, so we had every reason to believe his future could still be bright. But by age six he had an IQ of 52 and was back in diapers. Our child was deconstructing before our eyes and nobody could tell us why.
Eventually we learned that Alex had Multi-Focal Petite Mal Epilepsy and that this was likely responsible for his severe regressions. Simply put, some part of his brain experiences epileptiform activity all day long.
Alex's was prescribed pulse steroid doses for two years. Prednisone was a miracle. My son started talking again and most autistic stereopathy disappeared: arm flapping, repetitive behaviors, verbal jargoning. You name it. Gone. Progress came with great risk, though: osteoporosis, adrenal disease, diabetes. So steroids were abandoned, taking rapid developmental progress and complete seizure control with them.
My son's first anticonvulsant made him obese and raised his liver enzymes, so we stopped giving him that. The new medication gives him the impulse control of a toddler. Now I must constantly be on Alex or he may run into traffic, pull a boiling pot of water onto himself, or try to jump out of a moving vehicle. I won't even get into the aggression. And so, we see the neurologist at the end of the month to possibly try yet another anticonvulsant that will probably not fully control his epilepsy but will impart God knows what new side effects.
There are children in Colorado with Alex's conditions taking CBD Oil who don't live like this anymore. They have impulse control now, less repetitive behaviors, less rage. They appear to have all of the benefits Alex had on steroids without the risky side effects. Without any side effects at all, really. My son deserves that chance, too.
On January 3rd I was diagnosed with cancer. The peer review studies on CBD and full spectrum cannabis's ability to fight cancer seem endless. Here is a recent report from CNN's Sanjay Gupta called CBD vs. Cancer.
I want to access what I believe is my best chance at survival so I can take care of this child who will need me much longer than most kids need their parents. As it stands now, to access this I would have to leave my family and move to a legal state by myself. Since I would only do this as an adjunct to conventional cancer options, moving would make those treatments out-of-network, which I cannot afford. And besides, I need my family now more than ever. I don't want to be alone in a studio apartment somewhere in Denver throwing up into a garbage day-after-day.
WHY DON'T YOU JUST............
I'd like to address some of the suggestions often made to those of us seeking legal access to CBD in prohibitive states and state why these are not options for my family.
1. "Why don't you just move? I'd move in a heartbeat if it were my kid."
Would you? Would you, really? Does anyone really think it is that easy? Ask the families who just moved how that is working out for them. Yes, their epileptic children are doing better and that makes it all worthwhile, but these families are struggling. Jobs are scarce. Some families have had to split up, with half the family staying back home to make income while the other parent is in Colorado with the sick child who cannot legally leave the state with her medication. There are siblings missing their mothers, retirement funds depleted, families without support. All because politicians in home states don't want to allow this because they think it's too hard.
If we were to move it would take my husband a year to get his professional license set up. And, starting over in a new state with no connections would cut his income by half. Autism is expensive and requires every penny we make now, so my family couldn't make it on less. And, we can't risk our health insurance now since I need that now for cancer treatment. This is not the time for my family to be starting over. We shouldn't have to.
2. "Why don't you just buy it on the Black Market? If it were my kid I'd find a way to get it."
In his documentary "Weeds" Sanjay Gupta mentioned how marijuana on the black market is being bred to contain up to 30 % THC (unaltered strains are under 10%) and that this is why some people have adverse reactions to it like panic disorders. There's no way I'm giving that to my son. And, since high CBD strains do not produce a high and are not smoked, they aren't exactly available on the black how market anyhow.
Besides, I place a high premium on being a law abiding citizen. I just do. I'm a mother. A pre-school teacher. I don't care for anything mind altering. I even refused prescription medication after my C-Section surgery and probably will after my lumpectomy, too. Plus, my future is already so uncertain. I still don't even know what cancer treatments I may need. I don't need to be sitting in a jail cell with my bald chemo head when I should be spending every precious moment with my family.
I HAVE A BETTER IDEA
I have a better idea. Help us. Just help us please. Co-sponsor SB 43, The Cannabis Compassionate Care Act and update SB 50 to allow CBD Oil into Kentucky as hemp.
Suzanne Maria De Gregorio
January 21st, 2014