Parent and Caregiver Perspectives towards Cannabidiol as a Treatment for Fragile X Syndrome

The National Fragile X Foundation (NFXF) does not provide medical or legal advice or services. Rather, the NFXF provides general information about Fragile X as a service to the community. The information provided in this summary is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. The NFXF has not validated and is not responsible for any information or services provided by third parties. You are urged to use independent judgment and request references when considering any resource associated with the provision of services related to Fragile X.

Authors: Madison Maertens, Hailey Silver, Jayne Dixon Weber, Hillary Rosselot, and Reymundo Lozano

Summarized by Madison Maertens

Summary

Cannabidiol (CBD) is a non-intoxicating substance that is found in cannabis (also known as marijuana) plants. “Non-intoxicating” means that CBD does not cause a “high” feeling when someone uses it by itself. CBD is being investigated as a possible treatment option or supplement for individuals who have Fragile X Syndrome (FXS). So far, there have been studies showing that CBD use may be able to help reduce certain symptoms such as anxiety, sleep problems, and behavioral differences such as hyperactivity, avoiding social situations, and/or aggression.

The goal of this study was to learn about the experiences and opinions of those who care for individuals with FXS that have used CBD supplements. We did so by sending an electronic survey to parents and caregivers that was voluntary and anonymous. The survey included questions about the helpful and harmful effects of CBD supplements that they had observed. The survey also included questions about the type, brand, and dose of the CBD they used, the cost of the CBD, how often the CBD was given, why they had decided to begin giving the CBD, and any side effects they had seen. The survey was mostly made of multiple-choice questions, and there were some free-response questions as well.

The 15 parents and caregivers who completed the survey and were currently giving CBD reported that they used a wide range of types, brands, and doses of CBD when giving the supplements to the individuals with FXS. There were many reasons why they had chosen to begin giving CBD supplements; the most common reasons included that they had heard good things about CBD from members of the community, they felt that CBD had fewer side effects than other medications, and they felt that CBD was a more natural option. Most agreed that CBD helped improved some of the symptoms, including but not limited to anxiety, irritability, and hypersensitivity, and also reported that CBD made a positive difference overall for the individuals with FXS. Caregivers mainly reported that side effects were not experienced, and any that were reported were generally mild or very mild. Lastly, the cost of over the counter (OTC) CBD can be challenging or expensive for some, and a few parents reported that the cost was unreasonable.

Why This Matters

Some caregivers and parents of individuals with FXS have given CBD supplements to the individuals they care for and learning about their insights and experiences is important. This was the first study to learn more about their observations and opinions regarding CBD to treat FXS. Individuals with FXS can have a range of challenges such as anxiety, sleep problems, avoidance of social situations, hyperactivity, and/or aggression. These survey responses provided additional support for CBD having the potential to help improve or relieve some FXS symptoms. Therefore, it is important to improve our knowledge of this topic to promote safe, equitable access. Doctors should always be consulted before changing treatment plans.

Next Steps

Our study found that there is a wide range of different types, brands, and doses of CBD being given to individuals with FXS. The lack of consistency highlights the need for more unified information and guidance on how to safely and effectively provide CBD supplements. One main limitation of the study was the small sample size, so future studies with more participants would be beneficial. Incorporating caregiver surveys during CBD clinical trials may also provide additional valuable insights.

Acknowledgements

The authors wish to thank all the families who participated in the survey for sharing their experiences and insight. The authors would also like to thank the National Fragile X Foundation and their Research Readiness Program advisors for their feedback, collaboration, and overall support of this project.

FOR MORE DETAILS VISIT:

Read the full publication, Parent and Caregiver Perspectives towards Cannabidiol as a Treatment for Fragile X Syndrome, in the Genes Special Issue Epigenetics of Fragile X and Other Neurodevelopmental Disorders.

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