Madison-area mom wants sick son to be able to take marijuana ing - WKOW 27: Madison, WI Breaking News, Weather and Sports

Madison-area mom wants sick son to be able to take marijuana ingredient, CBD

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MADISON (WKOW) -- The Madison-area boy doctors called "one in a billion" is fighting a new health battle. His mom hopes a new type of marijuana is the answer, so she's fighting to make it legal in Wisconsin.

The Wisconsin Assembly takes up a new bill Tuesday that would make an ingredient in marijuana legal and Amylynne Santiago Volker wants to give it to her 9-year-old son, Nic.

You may have already heard part of  Nic's story. In 2010, he was the first person ever to undergo DNA sequencing to diagnose his mysterious disease. Doctors figured out what was causing his life-threatening intestinal disorder and he had a bone marrow transplant. That seemed to help.

But later, Nic started having seizures. Amylynne says, "The seizures are a complication probably from the bone marrow transplant and/or all the treatment he's gotten over the years." So in trying to help him, Amylynne says treatments may have caused this new problem.

Nic has about 100 seizures a day. Any one of them could kill him. Amylynne says traditional medicines aren't working. "One doctor said he would be happy to prescribe him Marinol, which is a pill form of medical marijuana and it's high in THC and I did not want that."

Then Amylynne saw a recent documentary by CNN's Dr. Sanjay Gupta about a different kind of medical marijuana; one that isn't high in THC, but high in CBD, or cannabidiol. CBD is nonpsychotropicc, so it doesn't get the user high, like THC does. Some doctors say it can treat seizure disorders. In fact, Amylynne says, "One doctor has said if it was legal he would prescribe it for Nic."

But it's not legal in Wisconsin. So Amylynne went her state representative, Robb Kahl (D) Monona, hoping to change the law. Assembly Bill 726 would allow CBD to be used to treat seizure disorders. It passed the Committee on Children and Families and after an amendment that would require the FDA to approve CBD's experimental use and would limit which doctors and pharmacists could dispense it, the Wisconsin Medical Association came out in support of the bill. In a statement to 27 News, the Wisconsin Medical Association said, "The Society supports the bill after the amendment's passage, as it ensures that the legislature isn't moving faster than scientific protocols. The bill as originally drafted gave us pause, as it simply deemed CBD products as not being THC (evidence is mixed on this) and allowed a "practitioner" to dispense CBD for treatment of seizure disorder. The original bill raised a fundamental red flag for us: the legislature getting in front of science and current research - not unlike our opposition to the mandated ultrasound bill from earlier this session. It's important to note that while this bill is related to marijuana, it is very limited in scope and has a very defined procedure before something can be dispensed - and that's only after the FDA approves an investigational drug permit per federal law."
In committee, the only lawmaker who voted against this bill was Representative Mike Endsley (R) Sheboygan. 27 News called his office last week to ask about his concerns, but hasn't heard back.

Some argue, there's no solid evidence CBD can curb seizures and they want proof first, not just testimonials from patients who have used it.

The full Assembly is scheduled to vote onAB 7266 Tuesday.

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