If you have CDKL5 and are interested in or are using CBD we have a facebook support group that is not brand specific
www.facebook.com/groups/CDKL5CBD/

CBD is an abbreviation for Cannabidiol, a non intoxicating compound found in cannabis. Both hemp and marijuana are cannabis. Hemp naturally contains high levels of CBD with low levels of THC, which is the cannabinoid that creates the psychoactive effect in marijuana. Hemp is defined as having less than 0.3% THC. With the addition of CBD to Harper’s diet we were able to stop her seizures, which changed our lives.

In addition to obtaining seizure control, Harper was removed from the Failure to Thrive (FTT) list, got better sleep at night, had better bowel movements, was more vocal and had increased eye contact.  She began to smile purposefully, could respond to yes/no questions, and learned to use an eye gaze communication device.  Her increased interaction strengthened the bond between herself and everyone around her, including her siblings.

With CBD Harper went from being an included member of the family to an interactive member of the family.  Harper moved beyond existing and started living!

In my experience with Harper we started with a pea sized dose of CBD at night for 3 to 5 days, and worked up slowly from there.  Moving too quickly with too high a dose can cause digestive issues.  Dosing will vary based on individual regardless of diagnosis. Everyones metabolism varies. It is important to note that while on CBD Harper was also on pharmaceutical Anti Epileptic Drugs.  Our goal was seizure control and we obtained that by adding CBD to Harper’s diet and leaving her other medication as is.  To prevent supplement interactions with pharmaceuticals always give supplements, including CBD 1 to 2 hours apart from any medication.

Contact us for more information on various dosing options for specific symptom treatment.

*This and all content relating to Harper’s experiences with CBD was created for informational purposes only and 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.