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Aaron J Harding, MS is a retired naval officer and clinical laboratory scientist professional who has a 13 year old son with a neurodevelopmental disorder and rare disease, SynGAP Syndrome. This article is a summary of the countless calls and conversation Aaron has had with a number of parents asking him about CBD. Neither Aaron nor SRF (SynGAP Research Fund, who helped contribute to this blog) has any financial interest in any of the people or companies mentioned here. Further, none of this is medical advice, we are just parents sharing with other parents what we have learned to help our kids from day to day.

Our Journey

Confronted with a surgical option to control our son’s intractable seizures from a rare disease called SynGAP1 Syndrome, a friend recommended that my wife look into cannabidiol or CBD. After being put in touch with a family who had seen positive results, we began to research medical marijuana.

Having grown up in the 80’s watching Cheech and Chong and Spicole from Fast Times at Ridgemont High, we had to change our paradigm of marijuana. After talking with people, searching the internet and reading research articles, we grew more comfortable with the idea of using CBD. We spoke with our neurologist who wrote the script, then we were off to to see the medical marijuana physician who issued the card, which was crucial since our son is a minor child. Finding a local distributor for CBD wasn’t easy. Eventually, we had a 1 mL syringe with concentrated CBD tar delivered.

After a few days of giving a half a grain of rice sized amount — which was approximately 2.5 mg — we tested our son by placing him in front of patterned objects. We knew these objects triggered reflex seizures in our son. This time no seizures were observed. We were becoming believers.

After further research, we reached out to Jason David and started using Jayden’s Juice from Modesto, CA. Jason David is in the cannabis industry and his son has an intractable form of epilepsy called Dravet. Jayden’s Juice is what Jason David created for his son Jayden — there are a number of SynGAP parents in California who are very loyal to this product. For four-years now, we’ve had 100% control of our son’s seizures using Jayden’s Juice as a secondary medicine with clobazam. We tried to be on 100% CBD but saw seizures, plus the quantity of CBD increased driving up cost over $300 per month, so we had to reintroduce the clobazam.

Where to find more information

The following is information we found helpful in our journey with CBD. The documented benefits are real. Of course, it is recommended before starting CBD to discuss it with your physician. Additionally, any product used should be manufactured using Good Manufacturing Practices, which includes third party testing for quality and quantity.

Education and Support. Our primary internet sources of information on medical marijuana came from Dr. Bonnie Goldstein, MD and Realm of Care.. Here are a couple of videos that I recommend:

Dr. Goldstein on Medical Cannabis Treatment and Realm of Caring Research Registry. Additionally, Project CBD is informative with easy to read articles. We found numerous research articles on the use of CBD for seizures. Also, look for a local support group, this may take you outside of your comfort zone, but you won’t find a more supportive and informed group of people who can relate to your challenges.

Marijuana versus Hemp. Without getting into too much Botany marijuana and hemp are the laymen’s terms for different subspecies of the genus Cannabis. Marijuana CBD generally has 15–40% THC, while hemp is often 0.3% or less THC. CBD is the same molecule regardless of the plant it comes from, but CBD is extracted from the whole plant, so all the components — such as terpenes — of the plant are included, this is called the Entourage Effect. This is not a single molecule product, you are getting a benefit from the combination of cannabinoids like CBD, THC, terpenes, etc. In fact there are ten each having a different beneficial health effects.

Legality. With the passing of the 2018 Farm Bill this past December, hemp is removed from the Controlled Substances Act (major accomplishment) which results in a whole host of opportunities, but there is still a watch and see attitude for how this is going to all play out.  Without over simplifying this, essentially the federal government is caught up with states you have already approved its use and it now allows states slow to pass state legislation to align state with the new federal law. What doesn’t change, hemp will have virtually no THC, but Marijuana and the CBD oil derived from it has THC and is therefore illegal under current federal and some state laws. So, you can mail order hemp based oil, but not marijuana since USPS is a Federal entity. Confusingly enough, Epidiolex is now the first FDA approved CBD product for use in the U.S.

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Source: http://www.ncsl.org/research/health/state-medical-marijuana-laws.aspx

Charlotte’s Web Hemp Oil is widely available and can be ordered online anywhere in the US and, generally speaking, internationally.

If THC is available, why consider adding THC? CBD and THC work together on receptors which improves the effects of the CBD while CBD counters the psychoactive effects of the THC. Determining effectiveness of THC with CBD differs based on the medical condition. In 2018, the Minnesota Department of Health published a comprehensive review of medical cannabis research for defined medical conditions. For each medical condition, it describes what dose of CBD and THC, which is helpful as a guide. The ratio of CBD:THC you choose will be dependent on the individual’s response.

Side Effects/Drug Interactions. Based on Trial of Cannabidiol for Drug-Resistant Seizures in the Dravet Syndrome (Devinsky, O et al.), they reported side effects compared to a placebo group were diarrhea, vomiting, fatigue, pyrexia, somnolence, and abnormal results on liver-function tests. There also is some indication that CBD might harm the liver, especially if taking valproic acid. In the article Interactions between cannabidiol and commonly used antiepiletic drugs (Gaston,TE et al.), there is a comprehensive table that list if there is a drug interaction (Table 2) and in Table 3, it lists whether or not the interaction is enhanced or inhibited. In our experience, the side effects of CBD have paled in comparison to those of other pharmaceutical products.

Dosing Guidelines. Dr. Goldstein has a comprehensive handout — A GUIDE TO SAFE AND EFFECTIVE MEDICATING. As a general rule, you want to start on a low amount and go up slow, increasing the dose approximately once a week based on observed effects.

We hope you find this summary of topics helpful which is important to think about as you begin your journey to using CBD. We can attest that CBD can change a person’s life, especially if they are struggling with a neurodevelopmental disorder and/or epilepsy.

News: Aaron’s and Monica’s son was one of 56 patients that participated in this study. Here’s an article summarizing a published paper by the American Academy of Neurology, peer-reviewed neurology journal “Neurology ”: https://tinyurl.com/y8a84py9

Link to: The Syngap Research Fund, Inc Blog site: https://medium.com/@syngapfund

Blog Revised: January 14, 2019

*Disclaimer: This blog post and linked articles were prepared and written by parents from the SynGAP Research Fund in their personal capacity.  The opinions expressed in this blog post and linked articles are the author's own, and do not reflect the views or opinions of H2L2 Technology, Inc.  H2L2 Technology, Inc. has no financial relationship in any of the people or companies mentioned here.  This is not medical advice.