The Columbian / Associated Press

Vancouver parents struggle to find help for daughter

Navigating the medical marijuana system remains difficult in Washington, even for those who want to use CBD, a non-psychoactive component of the plant.

Jim and Cindy Lightheart of Vancouver first learned that their daughter, Courtney, was sick nearly 25 years ago, when the girl was 5 months old.

Courtney suffers from Rett Syndrome, a neurodevelopmental disorder that causes her to have small seizures every eight seconds or so and grand mal seizures on a weekly basis.

“The grand mal, it’s like a volcano,” Jim Lightheart said. “It builds and builds and then it erupts. At her peak, she was having 17 of them a month. Now she’s down to about one a week.”

Courtney has never been able to speak, but she does use a few hand signals and expressions to tell her parents when she’s thirsty, hungry or not feeling well. The couple have gone through dozens of pharmaceuticals to try to help her — many with severe side effects.

“A lot of these medications just make her so miserable,” Cindy Lightheart said. “One medication a few years ago, she just screamed and screamed all the time. It took us forever to get her off of it, but there was no way we could watch her suffer like that.”

Other medications have damaged Courtney’s liver and kidneys, including the current one she’s using. And she still has hundreds of seizures a day.

“Three years ago, we had to pull out all her teeth and put her on a feeding tube,” Jim Lightheart said. “It was so hard to do that.”

A few years ago, the Lighthearts heard about the success of a high CBD cannabis strain called Charlotte’s Web used in Colorado to treat seizure patients. They’re on the waiting list for treatment with it — but to do so they will have to move to Colorado, because the treatment is only available there and in a few other states.

It’s not available in Washington.

“It’s been helping a lot of people,” Cindy Lightheart said. “I talked to a mom back in Colorado and she’s using this CBD oil. She said her son is sleeping better, he’s more alert. He used to lean over and drool; now he sits up.”

Part of the problem with the medical marijuana system here is that it’s been hard for the couple to find a high-content CBD oil — even though their doctor recommended it for Courtney.

“Doctors, their hands are tied,” Jim Lightheart said. “They can … (suggest) it, but once that’s done, it’s up to you to find it.”

Because the medical system has been so unregulated in this state, they haven’t been able to find a list of reputable medical dispensaries that sell tested CBD oil that they know is safe for Courtney. And on the recreational side, where there is some demand for high CBD products, it’s also been hard to get anything to meet their specific needs because the market is still evolving and many of those products aren’t yet available.

Another problem with going through the recreational market, which has far stricter testing requirements for marijuana than the medical side, is that consumers on that side are looking for products that have both THC and CBD — and the Lighthearts don’t want Courtney to be exposed to THC, the substance that gets people high.

“We don’t want to give her any THC,” Jim Lightheart said. “Charlotte’s Web, that’s the main thing we’ve heard about that’s just CBD. If we find anything here that’s similar, we want it to be tested so we know exactly what we’ll be giving her.”

Source: The Columbian / Associated Press