Do the clinical trial, if you can. It is good science and is enrolling all over the country. It is an important trial.
But what if your child is found to not be eligible for the clinical trial? Or what if what if they’re out of the age range?
Have a conversation with your child’s physician and ask about CBD. I would say that the feedback I get from families is the changes in recent years where they are putting CBD in a form like gummies have made it a lot easier to take than the oils, tolerability has been improved. There’s no evidence of organ toxicity.
There is the potential to show interaction with other drug metabolism. So that’s an important thing to talk about. We don’t really know what the dosing should be. We are studying pretty high dosing in the clinical trial compared to what it is going to say on the bottle of CBD. But at the same time, we don’t really want people going off and taking 10 times what it says on a bottle they get over the counter.
In this kind of situation, I tell families – I’m not going to tell you that I think CBD is going to hurt your child, if you’re following the basic recommendations on a bottle. I have never heard of an incident of a severe adverse reaction, and I don’t think there’s any good evidence it is toxic to your body. At the same time, I don’t know if it’s going to do anything to help. So, we’re just really honest about that. Reducing anxiety would be awesome if it happened, but we’re not sure.
As long as people are aware of the risk, with drug metabolism, and they are aware of the small risk of impurities, because it is a supplement, and it is not perfectly regulated, then I don’t have a problem with families trying CBD, and in particular, if they can obtain it fully legally without any associated risk.
I do ask families, if you are going to start this, be upfront about it, tell us what form you are taking, tell us what the dose is, bring the bottle in and we’re happy to look at it. Then at least we can partner with families and knowing what they’re taking, we move forward from there.
The other thing I tell families, the same thing we would do in a clinical trial, it is always good to have healthy skepticism, because we all want individuals to do better – your FX doctors want it, families want it, and therapists want it. It is easy to start anything and then “will” things to be better. So, have a healthy skepticism and say, “Maybe we should try it when we’re not changing other medications. Try it when there’s not a lot of other changes in our lives or the life of my child – though that is sometimes easier said than done.
Also, think ahead of time — If this new treatment was working, what would we want to see improved? And then asked yourself – is that any different? That’s a nice way of starting any new treatments; for example, make a list of what we think anxiety is as we observe it in the family, as we see it in our family member impacted by FXS. How do we see it? And then once he/she is on the CBD, is it different?
Maybe get input from others around you, other family members, school, therapist, and try to get a feel for it. So if you’re going to try something, try to do it in a regimented way if you can, because it’s very easy in my career, the last 15 plus years, we’ve done this a lot as clinicians, we try something new, we’re excited about it, and then we just have rose colored glasses, and we think things are better.
So, we don’t want to be negative, but we want to just be very rational, and try to think ahead of time, if something was better, how would that be? In a quantifiable way? For example, would your son or daughter be able to follow a one-step command? Would they be able to sit in their desk for more than two minutes at a time in school? Would they reduce their biting of their wrist or hand? In certain situations, are they able to tolerate sitting down at dinner at a preferred restaurant? Think about some tangible aspects and then see if that’s better. That sounds simple, but I think that’s a targeted way to look at new treatment, if you’re doing a trial, or something like CBD over the counter. That approach really makes really make sense.