An Autism/CBD Oil Success Story: Rebecca & Calvin

I recently interviewed Rebecca. Her son Calvin has autism without epilepsy and takes CBD oil. Autism is not a qualifying condition under Colorado's medical marijuana laws. Calvin qualifies under the pain category.

This story will break your heart, then make it leap with joy.

Suzanne:

Hi, Rebecca. Can you tell us what your son's life was like before he started on CBD oil?

Rebecca:

Calvin's life was very difficult.  Calvin is 15 years old, has autism, is nonverbal and has been self-injurious and aggressive since he was little. His behaviors escalated out of control in December of 2012. I'm guessing that the increased behaviors were onset by puberty. It was unbearable.

I too, don't want to expose Calvin's most difficult times. I want to protect him but I understand the power of a testimony.

Calvin would wake up screaming. He didn't walk anywhere, he ran, like he was panicked. He would run up the stairs, beating his head on the wall, screaming, "bath time" as he cried. He wanted a bath but as soon as I put him in the bathtub, he would scream, bite himself and beat his head on the tiled walls. Nothing I did made him content. Public schools were not an option for us. They couldn't handle Calvin, so we put him in an ABA therapy center. The ABA therapy helped, but like I said, all hell broke loose in December 2012. It was not uncommon for us to have to pull over to restrain Calvin in the mornings. He was physically aggressive with his younger brother (who also has autism) and he would beat his head on the windows so hard that the glass would push out and I could see outside.

My husband and I would drop Calvin off and cry the whole way home. We cried but we didn't speak. We didn't have to. We knew what the other was thinking. Every autism mom's biggest fear. Institutionalization. I didn't want to institutionalize him. I wanted my baby to be home with me. I found myself having a nervous breakdown in the parking lot of his therapy center. I found myself saying things like, "I can't do this anymore, I can't help him, I can't live like this." All things that I'd thought for months, but never said. I was exhausted.



Not only were Calvin's behaviors so out of control that we spent several hours restraining him per day, he was also waking up in the middle of the night and leaving the house. He figured out that he could climb out the window and leave - and he did. Our house backs to a four lane road and Calvin fears nothing. It was horrible. The only thing I can describe his life as, was hopeless. We were at the end of our rope. All of us.



Suzanne:

Can you tell us what happened to Calvin after starting Charlotte's Web? How is life different for him compared to before?

Rebecca:

We started with edibles. We were put on a waitlist for Charlotte's Web. It would be several week before we could begin the oil and we couldn't wait.

When I bought the edible I was told that if this would help him we'd notice a change in about forty-five minutes. We dosed him. It was an incredible moment. My son was legal and we had the edible. Totally surreal. That faded quickly though, Calvin was screaming, biting himself, head banging, jumping up and down as hard as he could. We waited. forty-five minutes came and went. My husband and I looked at each other, wondering if this was just another thing that we had such great hope for that didn't work. An hour passed, an hour and fifteen minutes - nothing. Then, at an hour and a half after his dose he looked at me. He cracked a small smile. We waited. Calvin began to calm down. He stopped jumping, running, screaming, hitting his head etc. This was right around the time (give or take half an hour) that we'd have to take Calvin down to the basement to prevent him from hurting himself. This is when we'd have to restrain him.

Calvin sat with us in the living room. He wasn't engaging in his 23 step OCD ritual that he had to do before entering the bathroom. Also, he wasn't asking to go to the bathroom every five minutes. He was just sitting with us, watching a video on his Ipad. Typically, he'd find a video and instead of watching it through, he'd pick a certain part and play it over and over. Not that night: he just sat nicely, watching his video appropriately.

After about an hour Calvin took me into the kitchen and asked me for applesauce. We didn't have any and he knew that. He opened the augmentative app on his Ipad and said, "store." Then, he pointed at the front door and said, "go." I went. I was most definitely going to reinforce his language.

His quality of life has gone through the roof. The MMJ slows him down so he can function. He's so much more focused, too. He's learned how to sync his IPad and add movies to it. Before, if it took more than 30 seconds to add a movie, he would become aggressive and self-injurious.

Two weeks ago, Calvin wanted a song on You Tube. He was searching "animals" in his augmentative app. He kept looking at me, like he was unsure of something. Then he pushed "bear." Immediately after he started singing, "oh the old gray mare she ain't what she used to be." See, he wanted that song but because mare was not listed in the animal section he didn't know how to request it. He found the bear because it rhymes. He's problem solving!!!!!

Suzanne:

Tears here. Tears, Rebecca, because I understand what this means: quality of life for your boy, finally. He can finally find himself and explore his world without being subverted by electrical storms in his brain. Huge!

What do you want people, and the medical community, to know about CBD oil?

Rebecca:

I'd like for people to know that MMJ is safe and effective. Initially, I was overcome with joy and heart ache. Joy for the progress that Calvin made so rapidly and heartache for everything that he had to go through before MMJ.

For years I took Calvin to various doctors. I told them what I was seeing and everything that I reported was discounted. I told them about the pain that he experienced and everything that I said was blown off. "Your son is behavioral." That was the answer that I was given for years.

I would report that Calvin had blood in his stools after ingesting gluten. I took him for allergy testing and was told that Calvin does not have a gluten allergy. I knew he did. Why wasn't it showing up?

Calvin would hurt himself, I would report that he was experiencing pain in his gut. They did not listen. I found myself in a world full of moms who were treating their kids on their own because the medical community failed them. Naturopathic doctors, homeopathic doctors, DAN doctors, special diets, protocols for ingesting clay. These moms were seeing what was seeing:  real medical issues with their kids. The medical community had no answers. We tried these things with nothing to show but empty pockets. We tried to go down that road but to no avail.

Instead of making a statement to people and to the medical community I'd like to ask a question. Why is it so shocking that a mom would try medical marijuana for their child? After discovering that we have an endocannabinoid system, why not feed it? Why is it so socially acceptable to give kids mind altering, synthetic meds that have horrible side effects? Why will doctors recommend removing part of a child's brain to stop seizures but the same doctor will tell you that MMJ is dangerous? Also, why are people so outraged about a child getting "high?" Especially, parents who have their kids on mood stabilizers, anti-psychotic, anti-depressants and benzos. Why is a man made chemical that causes a high ok? I just don't get it.

I will not give up on my son. I will do anything to help him. This is helping him tremendously. Autism must be added to state's lists of qualifying conditions. Especially now. Autism effects 1/30 school aged boys. We need change now. I don't want to see one more child institutionalized, one more family torn apart. Since sharing my story, my inbox is flooded with people in the same situation that I was in. If you don't have a child like this, you can not possibly understand the constant state of fear that we live in. Not being able to sleep because your child is eloping in the middle of the night, having to restrain him on a daily basis. Wearing long sleeved shirts to hide the bruises and scratches on your arms. Please, have compassion on us. We only want to help our kids.

Suzanne:

You mentioned in another conversation that at fifteen your son was non-verbal when he started talking after beginning CBD oil. Can you tell us about that? This is very rare. The only other case of a nonverbal fifteen year old I know of who started talking was a boy who had recently begun neurofeedback therapy.

Rebecca:

Yes, and I'm so glad that you asked today! We adjusted our dosing yesterday, and we're seeing more results. Today, we picked Calvin up from therapy and asked him what he wanted to do. He said, "I need some things from the grocery store." This phrase was on his old augmentative device. We said, "Do you want to go to the grocery store or do you want to go to Party City?" (Every time we go to Party City, Calvin picks balloons) Calvin said, "Party City, balloons." So exciting! Not only was he telling us that he wants balloons, his cognitive language is improving so much that we can have verbal exchanges with him!

Calvin is 14, almost 15. He is considered non-verbal. Before MMJ, he had a few words. "Pop", "all done", "go to bathroom", and an occasional "yeah". The night that Calvin took his first dose, he was watching Elmo in Grouchland. He's seen the movie 9836578 times. For the first time he started saying every word that they said, as they said it. He was singing too.

We were so happy but as you know, we want spontaneous, appropriate language. We started getting it. We were at PT and Calvin's therapist was so impressed with Calvin's ability to cooperate. Our typical PT appointment looked like this- Calvin hitting, kicking and scratching the physical therapist, as he tried to stretch Calvin's legs. Sometimes, Calvin urinated on himself because it was so painful. Side note- Calvin was having 5-7 instances of incontinence at his therapy center, per week. He has not had one single instance since he started MMJ, two months ago!

Back to PT- Calvin was doing so well since the MMJ. His therapist was so impressed. He looked at Calvin and said, "Man, you are doing such a great job, Calvin. I'm really proud of you." Calvin looked up at him and said, "thank you." Clear as day! We're seeing this daily. He started saying "no" too. That has made things so much easier. He has several new words and we're only two months into MMJ. My favorite, was day 13. Calvin woke up and came into the living room to sit down. I was walking to the back door to let the dogs in. Calvin and I locked eyes. We smiled at each other and he said, "love you." I waited 14 years for that!

Editor's Correction: 4/10/14

Though this interview focuses on CBD, it has been brought to my attention that Calvin also takes a full cannabis oil strain. It takes both to impart these benefits to him, as is anecdotally the case for many children with autism and some kids with epilepsy, though others with epilepsy just take CBD.   

Allow CBD Oil in Kentucky for Alex

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!


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Suzanne De Gregorio is editor of CBD Oil for Autism and Epilepsy. She lives in Louisville.