DENVER (CBS4) – New rules for Colorado’s recreational marijuana industry are prohibiting state-licensed labs from testing medical marijuana patients’ products, including pot, edibles and infusions. Retail marijuana testing facilities are banned from accepting samples from patients, caregivers, consumer protection groups or anyone else outside of the licensed marijuana industry.

The rule changes have put the Wilson family in a tough spot. After striking out with traditional treatments for their daughter’s seizures, the Wilson family packed up and left New Jersey for Colorado in March for access to medical marijuana and lab testing.

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Vivian Wilson, 3, was diagnosed as a baby with Dravet Syndrome, a condition that caused 50 to 200 seizures a day.

“It’s nerve-racking, frustrating and saddening because I see the suffering she’s going through,” says Vivian’s father, Brian.

Now Vivian’s parents treat her with cannabis oil four times a day. She’s given a low-THC strain called Charlotte’s Web, which is lab-tested, and a homemade remedy — made from plants purchased at a dispensary and modified by her parents. Through experimentation, the Wilsons had found a regimen that was working, and Vivian’s seizures reduced dramatically.

“On a good day she has none,” says Wilson. “We are never really in that bad zone anymore.”

Brian Wilson (credit: CBS)

Brian Wilson (credit: CBS)

But then the Wilsons found out they were no longer allowed to bring their homemade medicine to a licensed testing facility. Without access to testing, providing Vivian with an accurate dose is a crapshoot.

“It’s trial and error, guess and check,” says Wilson, who added they had to start from scratch to find the correct dose once his tested medicine ran out. “We’re just going up little by little, watching and observing and questioning and doubting everything that we are doing.”

The change in dosage worsened Vivian’s condition, until they could find the right level again.

“They completely cut out patients,” said Wilson. “I just can’t fathom why they would be putting people through this. The impact at the end of the day for us is my daughter suffering.”

Genifer Murray used to test Vivian’s marijuana at CannLabs but was told she was no longer allowed to accept samples directly from patients.

“It’s silly. Everyone should be able to test,” said Murray. “We want every consumer to have safe and effective medicine or products.”

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Lab testing (credit: CBS)

Lab testing (credit: CBS)

She was only made aware of the rule after a competitor, Steep Hill Labs, inadvertently broke protocol by accepting samples of marijuana-infused candy bars, after consumers complained about a lack of potency.  The lab found only a trace of THC in the candy bars, far less than potency than was indicated on the packaging. Instead of being praised for bringing this to the attention of regulators, Steep Hill was warned not to accept samples that were improperly tracked. (Read the warning letter.)

According to Marijuana Enforcement Division Director Lewis Koski, the lab-testing rules were created to help track marijuana from “seed to sale” through the regulated cannabis industry. “They intended that to be business to business and did not contemplate people being able to bring things outside the regulated environment,” said Koski.

Roger Martin, the founder of a marijuana non-profit, Grow4Vets, thinks there was a connection between Steep Hill’s findings and the crackdown on third-party testing.

Roger Martin (credit: CBS)

Roger Martin (credit: CBS)

“I think they were embarrassed by that,” said Martin. “People want to know, ‘Why weren’t you watching out for our safety? Why weren’t you watching out for the integrity of these products if you are the ones regulating the ones that are making them?’ ”

Now Grow4Vets, which made a name for itself giving away free marijuana to veterans, is taking up the testing issue. A veteran donated lab testing equipment and the group plans to operate an unlicensed lab, providing testing for veterans and families with sick children who couldn’t otherwise test.

Martin says everything Grow4vets gives away at its events is tested: “I’m pretty confident in the science guys that we have.”

Brian Wilson, Vivian’s dad, thinks regulators have their priorities backward, relegating some of the most vulnerable patients to unregulated labs.

“I’m trying to protect my daughter,” said Wilson. “I’m trying to do the right thing, I’m trying to treat this as medicine and be very serious about it and the state is not letting me.”

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– Written by Mark Ackerman for