I have posted about this in a couple different groups now but want to spread our story. Our experience may help others and I may find help from someone else who may have gone through what we are now.
Our son Nicholas is 8 years old and in third grade. He was diagnosed with ADHD in first grade. We also suspect ODD and he has anxiety and insomnia. Extremely impulsive and high energy. He’s always been like that.
Beginning of treatment
We started noticing he wasn’t like his peers around age 3. Preschool, kindergarten, and first grade I was in contact with at least one person from school every single day. In first grade he began taking strattera. We played around with the dose and when it worked it was great. Then he was off of it for a couple weeks during a laps in insurance and when he got back on it he was the worst he had ever been.
So we stopped that and went to see a child psychiatrist. He started him on Vyvanse last year. The first week was scary and we actually stopped giving it. He was having terrible night terrors and would be up for hours terrified. This would happen occasionally before the Vyvanse but not at all like that. I did some more digging on the stuff and saw that that was normal the first couple weeks, but that it usually subsided. We talked with our son about it and he decided to give it another try. A few weeks later he was doing great.
I wasn’t hearing from the school every day unless we forgot to give him his pill that morning. It was good for several months and then toward the end of last school year it started going downhill again. By this time we were very unhappy with his doctor for several reasons and chose to switch. We upped his Vyvanse a little and tried a few different booster meds in the afternoon. Nothing really helped.
Weight and treatment
At the beginning of all this in first grade he weighed 57lbs. He lost quite a bit on strattera and only gained a few pounds back on Vyvanse. The kid never ate. The doctor tried to give him a couple different things to help the weight but insurance wouldn’t approve them. With both the strattera and Vyvanse he gets really emotional in the evening when it’s worn off. At the end of August he had an appointment with the psychiatrist and everyone has to do a suicide assessment.
It was then he disclosed with us that he had thought about killing himself. He says he feels like that when he and his brother would fight and that he’s always in trouble and doesn’t have any friends. He was seen by the crisis team and given a case worker who comes to our house every week and sometimes sees him at school. It was at that point I knew we needed to try and find something else to help him.
I remembered my in-laws making the comment that they would rather see him smoking pot than taking pills when we first started them. So I looked into medical MJ in my state and stumbled upon CBD. I spent a hard week looking into it and talking with my husband. We ordered the Kats naturals sample and a bottle of elixinol.
Start with CBD
We began CBD September 15th of this year so it really hasn’t been long. On October 19th we had parent teacher conferences which is always a dreaded day. The assistant principal and counselor were there along with his teacher. I was pleasantly surprised when they had nothing but positive things to say about his improvements over the past few weeks. We had noticed huge differences at home and I was thrilled to hear it was going just as well at school. They asked if we had changed anything and I mentioned that we had started giving him CBD oil. The counselor had never heard of it so she wrote it down and was interested to learn more. The assistant principal said she had heard of it but didn’t really know much about it other than it was being used to treat all kinds of things. I had mentioned that I knew he was still struggling the last hour or two at school and I thought if he could have a dose around lunch it may help him make it through the rest of the day.
They said if I could get a doctor’s note that it wouldn’t be a problem to give at school. So we began the game of phone tag with the doctors nurses. She travels to several of our rural towns so it’s hard to catch her. Before we could even get the note from the doctor I received an email from the assistant principal saying that they unfortunately could not administer CBD at school as it is federally banned from school property. We threw our hands up and basically said that the school would just have to deal with him the last part of the day then.
Two weeks ago my husband got a job and now Nicholas has to go to a sitter in the morning and daycare in the afternoon which has completely messed up his dosing schedule and it’s basically like he’s not taking it anymore. So in my desperation to help my son I made a choice. Now it’s at this point I want to make sure everyone knows that I KNOW what I did was wrong. I knew it when we did it but chose to do it anyway. In my post on the main group I heard dozens of tones that what I did was wrong. There is no need to make any comments about that. I’m posting this to inform other parents.
With that said….. On Friday I choose to send two CBD gummies (ZERO THC) with him to school. I instructed him to eat one when he went to his locker before lunch and the other when he got on the bus. He knows what the CBD is and that it is to be treated like medication and you never share medication. I had no fears of him sharing or another child stumbling upon it. Yes I know it could have been terrible IF a child had gotten a hold of it and had A RARE reaction to it for whatever reason.
There is also no reason to comment on that. We are well aware. So before Nicholas went to lunch he’s getting into his bag and he’s struggling to get the plastic bowl open so it takes him longer and his teacher is urging him to hurry up. He gets the bowl open and grabs the gummy and holds it in his hand and goes to the line where the teacher noticed him holding something.
She asked what it was and he told her it was a CBD gummy. She had no idea what that means (it’s a substitute teacher) and assumes it’s like a vitamin and sends him to the nurse’s office with it. There she asks what it is and he tells her. They know about us giving him CBD and she sends him to the principal’s office. He has been suspended from school Monday and Tuesday, she had to file a report with the police department and DFS. I get a call from her at work and rush home because the police and DFS are coming to my house. I showed them all the products we have, and they wrote down what Nicholas is using and how we give it.
They’ve never had this kind of call so neither one of them really knows what to do about it. The lady from DFS does a walk through of the house and talks with the boys for a couple minutes. I assume they both need to go do some research on what we’re using before they even have an idea on how to proceed. Tomorrow I have an appointment with the principal to talk about this not being on my son’s record.
He did nothing wrong here and I don’t feel this needs to follow him around. I’m also going to set into motion getting him set up with an IEP or 504. If he isn’t going to be able to take CBD on the schedule that works for him then we need to look into other accommodations for him. I imagine I’ll hear from DFS or the police tomorrow. I also plan on getting an attorney to look into this and see if there is anything that can be done to get him the cbd at school. If we can’t work sobering it with the school to help him then we are open to moving to a legal state. Homeschooling currently isn’t an option although we are brainstorming ways to make it a possibility. I will update as we progress and whenever I hear anything from anyone.
Also, we did an at home drug test on him tonight and it was positive for THC. He takes Bluebird classic 6x in the morning and afternoon and complete at bedtime. About 25mg a day total.
