Why I’m Not Hopping on the CBD Bandwagon

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

Share this article:

Share article via email
how to find a babysitter | Angelman Syndrome News | banner image for

As I drive around my neighborhood, there is no shortage of CBD shops within a 10-mile radius. They’re so prevalent that I thought it was time to seriously consider introducing cannabidiol to my 12-year-old Angel, Juliana. I joked with my husband that I was going to get some CBD lotion and use it like crazy.

Juliana is going through a rough patch of behavior as she moves through puberty. As I recently wrote, we got a reprieve  from her challenging behavior while we were doing some home improvements, but I think our grace period is over. With the return of the stressful behavior, I figured it was the perfect time to explore CBD as an option.

Recommended Reading
puberty

Tips for Dealing With Puberty in Angelman Syndrome

Years ago, my brother-in-law asked me if we had considered CBD for Juliana. His inquiry came long before there were signs on every street corner. Just mentioning it as a health alternative was still taboo. You could only purchase it in a few states at the time.

I did a little poking around and read a few articles about CBD’s advantages for special needs kids. I know things have changed a lot since then, so I headed back to the internet to do some more reading. I visited trusted sites to see how things might have changed since I last looked into it.

Time to pump the brakes

The plan was to find a good product and try it myself. Then, if I liked the results, I would try it out for Juliana. But I haven’t pulled the trigger because I couldn’t get past the possible side effects. Furthermore, an article I found about a special needs mom stopped me cold.

This mother turned to CBD after struggling to gain control of her daughter’s seizures. The CBD seemed to help, but later, doctors discovered a problem with their daughter’s liver. So depending on which articles you read, CBD may or may not cause liver damage. Honestly, there was enough confusion about it to give me pause.

I’ve decided that CBD is not the right option for Juliana or me.

There is research and promise behind the treatment Epidiolex, which was approved by the U.S. Food and Drug Administration a few years ago to treat Dravet and Lennox-Gastaut syndromes, two rare forms of epilepsy. Epidiolex contains cannabidiol.

The study “Cannabidiol attenuates seizures and EEG abnormalities in Angelman syndrome model mice,” published in the Journal of Clinical Investigation in 2019, highlights the possibility of CBD to treat seizures in Angelman syndrome, although it was a mouse study.

What now?

While current CBD research seems beneficial for epilepsy, that doesn’t help me right now. Nothing is in the data that points toward effectiveness for Angels and helping with behavior. CBD is not going to be the solution I was hoping for.

But some really good things have resulted from my quest for knowledge. First, I learned a lot more about CBD. I’m glad I took the time to do the research. I fought off the temptation to pop into a CBD shop and blindly try it.

Second, I received an important reminder: There is no quick fix when raising a child with Angelman syndrome. At the end of the day, I already knew this. But sometimes it’s still a message I must repeat to myself.

Of course, that won’t stop me from revisiting other options, like occupational therapy. Whether I feel ready or not, we’re on the brink of puberty. We’ll have to ride the wave and do our best to stay steady.


Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.

Comments

AJ avatar

AJ

We have seen incredible improvement in seizure control and overall well-being with the use of CBD. If you find the right provider and ratio, it can change your life. Be careful not to discourage parents in the broader community from trying something because of your hesitations. CBD is a lot more natural than any seizure med on the market.

Reply
Sabrina L. Johnson avatar

Sabrina L. Johnson

Hello AJ--The intent is not meant to be discouraging in any way. As a parent, I will always do what I feel is right for Juliana. I think most parents weigh things this way. This article is solely my opinion and what I feel is the right choice for us. I hope that any parent considering this path will discuss the best options with their neurologist or pediatrician. From there, they can make an informed choice as to how to proceed.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.