My name is Suzanne. I am the mother of a son with Regressive Autism and epilepsy. I want Kentucky to legalize CBD oil so my son and those like him can live their full potential. I don't want to do what I am about to do, though. I don't want to bare before the world my son's most vulnerable moments in life. My maternal instinct is to fiercely protect his dignity and there is nothing dignified in what I'm about to tell you. But families across this country are being told no by politicians who cannot begin to fathom what our children go through. They only know if we tell them, sparing no detail, so here it goes.
Alex was diagnosed with autism at age three. He was so high functioning that the child psychiatrist came back three times before rendering a diagnosis. All experts agreed that Alex was brilliant, so we had every reason to believe his future could still be bright. But by age six my son was severely autistic and back in diapers, with an IQ of 52. Nobody knew why.
His aggression was constant. Alex bit his own arms up and down and attacked me constantly. I couldn't work because I never knew if I'd need to remove him from school on a given day. Driving by car was terrifying because he'd pull me into the backseat by my hair as I struggled to remain on the road. Then he'd open the car door and try to jump out while it was moving. Grocery shopping was equally impossible because he'd take me to the floor by my hair as shoppers looked on in disgust. Not one person ever offered to help. To them I was just another mother who couldn't control her kid.
Clearly this child was in pain. It got so bad that he could barely function outside his home. Doctors said these behaviors were the nature of autism and there was not much we could do. When some friends suggested we rule out seizures I made an appointment with a neurologist. On the way to one appointment Alex dragged me by my hair through the streets of downtown Louisville. Once inside he lunged at my neck and missed, breaking my bra strap and yanking the entire thing off. That poor neurology intern bolted the room and brought in the big guy.
Anticonvulsant medication alone was obviously not cutting it, so they put him on Prednisone. On steroids my son's development took off. Alex grew more verbal and we got to know him on a whole new level. And most autistic stereopathy disappeared: arm flapping, verbal jargoning - you name it. I was thrilled that after years in hell my son was finally at peace. But there was a price. Long term steroid use risks osteoporosis, adrenal disease, and diabetes. We were risking his health to save his brain, which was unsustainable. After two years he came off steroids and somehow he's held up. No more rocket speed development though.
The only time we see that kind of aggression now is when he outgrows his anticonvulsant dose. When he starts having forty-five minute episodes where it takes three people to restrain him before he passes out that usually means it's time for an increase. If this is just epileptiform I'd hate to see what full blow seizures look like. I don't want to find out. My son is eleven. They say epileptic males often get worse during the teen years and puberty lurks around the next corner like a dark unknown. That's why I am in a race against the clock to get CBD Oil legal in Kentucky. I'm still traumatized by those early years and that fuels my efforts. I will not settle for break-through seizures and side effects. This is my child we're talking about. Would you?
CBD Oil is a safer option and it works. Children with epilepsy disorders even more severe than my son's are becoming seizure free and leaving anticonvulsants behind. And the parents marvel in awe how it has no side effects, because that's unheard of with anticonvulsants. My son had to come off his first anticonvulsant because it raised his liver enzymes and made him overweight. The medication he takes now carries kidney stones as a risk. He's minimally verbal. Now how is he supposed to tell us if he gets kidney stones? Enough is enough. Just give us the damn oil already!
Suzanne De Gregorio is editor of CBD Oil for Autism and Epilepsy. She lives in Louisville.