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How One Family Uses CBDV To Manage Rett Syndrome

At Blue Forest Farms, we truly believe in the power of the hemp plant. We’ve witnessed the effects of this plant firsthand and have made it our mission to help share its benefits with all. Recently, one of our customers, Ed Kammerer, graciously shared his experience with our 04 CBDv tincture.

cbdv rettsyndrome

Ed’s daughter, Barrett, has an atypical version of Rett Syndrome known as CDKL5, which is where his family’s journey with hemp began.

Kammerer describes Rett Syndrome and CDKL5: “It’s basically watered down to a protein deficiency on a chromosome, which typically affects girls more often than boys. Rett Syndrome takes girls from normal development and life until about age 2 or 3.  It then reverses that development, rendering them unable to speak or walk, causing intractable epilepsy, scoliosis, among lots of other things. CDKL5 is another type of protein deficiency that is similar but different enough to be considered atypical.”

One of the hallmarks of CDKL5 is intractable epilepsy, which CBD, as well as other cannabinoids, have been found to help manage the seizures.

“As parents, we’re trying to find a way to make her more comfortable and not suffer from seizures. Barrett was maybe four or five years old when we started looking into cannabis. We started having a lot of people reach out, ‘Have you seen this? Have you seen this?’ Yes, ‘we’re aware of it, and we’re looking into it.’  I think that that outpouring of support and interest from our family members and other people that knew us just gave us the confidence to dive into it more and investigate it.”

Eventually, Barrett started to use cannabis under the supervision of her doctors. However, they found that it was hard to track the effects since they were using full-spectrum CBD products, which often vary by batch due to the nature in which hemp grows. Full-spectrum CBD products contain all of the compounds within the hemp plant but often vary slightly with each harvest, as many factors dictate cannabinoid expression and ratios.

“I wanted to know exactly what I was giving my daughter each time.”

Ultimately, Ed began using precision dosed products made with CBD isolate and THC distillate so they knew what exactly was affecting Barrett. For a while, Barrett’s CBD routine consisted of a high CBD, low THC tincture, until her doctor suggested investigating a slightly higher dose of THC.

“Our doctor felt that cannabinoids do not really like to be separated. They work well in tandem and they work well together,” said Kammerer.

Ed’s journey investigating CBD and THC ultimately led him to CBDv, a rare cannabinoid found in our 04 CBD advanced formula.

“I read a very interesting article in a magazine about how a company was looking at CBDv specifically for Rett Syndrome and I became very interested in it. Over time, we started to look for some alternate, lesser-known cannabinoids that we felt could help as well, which is where your products fall into place.”

CBDv is very similar to CBD. It’s non-psychotropic and it’s been found to be effective at reducing and eliminating epileptic activity and seizures. In fact, a 2018 study showed that CBDv improved motor coordination and cognitive function in mouse models of Rett Syndrome.

Slowly, Ed began to reduce the amount of CBD isolate Barrett was taking and started incorporating Blue Forest Farm’s CBDv tincture, which contains a consistent dose of CBDv.

“Right now, it has been working very well for her. When a person is on so many medications, it is hard to tell exactly what is working until you start to pull one away. There was a point last year when we had run out of the CBDv formula and went back to using a tincture that only contained CBD. I don’t know if it was a combination of some other things going on as well, but we did see some seizures start to come back, she was less responsive and not so willing to work with therapies.”

Ed also commented on the energy-boosting effects of CBDv.

“Kids with Rett Syndrome tend to be low activity, not real active. I know that CBDv is an enlightening cannabinoid and tends to give people better concentration and so forth. We’ve definitely seen her respond better to her therapies and the people she works with on a day to day basis since we’ve had her on your product.”

Before our conversation ended, Ed left us with some advice for other parents considering giving cannabis or CBD to their children.

“I don’t by any means want to sensationalize anything that has happened with my child. It’s been a very difficult path and I don’t want to lead anyone on to believe that this is a cure. I just believe that cannabis is important, and feel that parents should not turn their heads away from it, even if their particular pediatrician or physician isn’t on board. I want to encourage other parents and other people to use these products and see what benefits they can get from them. However, I want them to do it safely. Do your research, talk to reputable doctors, and make sure you’re using quality cannabis products.”

To help further Rett Syndrome research, consider donating to the following organizations:

Rett Syndrome Research Trust,

International Foundation for CDKL5 Research

www.rettsyndrome.org.