Some very encouraging news. Researchers at at New York University’s Langone Medical Center have reported results from clinical trials of Epidiolex, a pharmaceutical preparartion of CBD Cannabidiol. The study was structured to determine if the medication was safe, not to measure effectiveness as a an anticonvulsant. Nevertheless, 80% of the participants in the study decreases in seizure activity and on average. The average result for participants was a 54% reduction in seizures after 12 weeks of treatment. Additional clinical trials are still in progress. Continue reading
I need to start this post with a disclaimer. This post suggests that it may be worth asking your child’s doctor about checking Vitamin D levels if your child has MECP2 Duplication Syndrome. If there are signs of deficiency, it suggests discussing supplementation with the doctor. It is not intended to recommend supplementing vitamin D unless a deficiency is identified or without your child’s doctor’s approval, and it is not recommending excessive doses of vitamin D. Having said that, here are the reasons that checking might be worthwhile. Continue reading
A pre-publication manuscript of a recent study provides some more information on seizure disorders in MECP2 Duplication syndrome.
This research is very consistent with the parent survey results previously reported on this blog site on March 27, 2012. However, the study also includes information on brain electrical activity. Unfortunately, it suggests that seizures in individuals with MECP2 Duplication Syndrome are associated with different patterns of electrical activity in different individuals, which may mean no single approach to treatment is likely to be successful for all individuals with the syndrome. Continue reading
While there has been a lot of popular discussion of treating seizures with Cannabidiol, there have been few published studies of the results in children with seizure disorders. A study published in December 2013 in the journal Epilepsy and Behavior provides some encouraging information. While the study only surveyed a small number of participants and depended on parent perceptions rather than objectively measured data, the results were positive. Continue reading
About the Survey
This survey was undertaken to determine the perceptions of parents or caregivers regarding regression in individuals with MECP2 Duplication Syndrome. The purpose of the study was to supplement the information provided in the study by Peters and colleagues in 2013. It differed from the published study in several important respects. Continue reading
1 October 2013 Today begins Canada’s revised medical marijuana program. The new program will make pharmaceutical grade cannabis available to individuals who have been approved for treatment. It replaces a previous program that allowed approved individuals to grow small quantities for personal use.
So far only one LICENSED PRODUCER shows up on Canada’s Official Medical Marijuana website. Continue reading
This 15 -minute video combines the original youtube video with some of Sanjay Gupta’s CNN report. It is very hopeful. While these video’s report on children with Dravet syndrome at least one family is now trying it with their child with MECP2 Duplicatio Syndrome and reporting encouraging results.
Recent interest in cannabidiol as an anticonvulsant has many families asking if cannabidiol might be valuable in treating seizures in MECP2 duplication syndrome. There is no easy answer to this question, but here is what we can say for sure: Continue reading
This post starts with more than the usual disclaimer. (1) This is not intended as medical advice, and (2) this issue is based on early research that may or may not turn out to have clinical relevance. Having said that, the question remains:
Might anticonvulsant medications that contain valproic acid or closely related compounds be a bad choice for individuals with MECP2 Duplication Syndrome? Continue reading
This post is largely a discussion on one article on seizures in MECP2 Duplication Syndomre:
In 2009, Echenne and colleagues published an article on epilepsy in five boys with MECP2 Duplication Syndrome. They suggest that the seizures, EEG patterns, and MRI findings MECP2 Duplication syndrome are unique in some respects and recognizing them can become a key to diagnosis MECP2 Duplication Syndrome. Continue reading