CLARKSVILLE, TENN. — Her mother, Felicia Harris, calls her, “a new face of the medical marijuana debate,” referring to Lexy Harris, 6, who suffers from intractable epileptic seizures as a result of Dravet Syndrome, currently being treated with other drugs.
The other anti-convulsant drugs the Harris family has tried – including experimental and non-FDA approved Stiripentol, which costs $2,000 a month – have a host of possible side effects, including damage to major organs and developmental delays, that parents of children with severe forms of pediatric epilepsy, along with many doctors, say are nearly as bad long-term as the disorders their children suffer from daily.
Recently, a derivative of marijuana called cannibidiol, or CBD, has shown promise as an alternative for treating seizures with fewer side effects, advocated for by renowned physicians, including Dr. Sanjay Gupta, formerly a steadfast opponent of medical marijuana use. However, though CBD does not cause a euphoric high like THC (tetrahydrocannibinol), the best-known and psycho-active component of marijuana, it is illegal in Tennessee.
Until very recently, Felicia had called Stiripentol her “miracle drug,” since it controlled Lexy’s seizures better than other prescriptions. Following a hellish week, she is no longer so sure. Now she intends to testify on behalf of medical marijuana before legislators next week on Tuesday, before the House health subcommittee votes on whether to allow H.B. 1385 before the full committee for another vote.
Just days after a Leaf-Chronicle article about the medical marijuana debate in which Lexy’s situation was profiled, she was diagnosed as needing a wheelchair because her legs have become progressively weaker. Lab results showed that medications that Lexy was taking were harming her liver, requiring another medication to control the side effects. Her lowered metabolism, another side effect, required yet another prescription.
On the heels of that, Lexy experienced what Felicia called her most violent seizures ever. Lexy was rushed to Vanderbilt Children’s Hospital, where a day after being admitted, she was placed in the intensive care unit (ICU).
“She started having more violent seizures,” said Felicia. “She had a six-hour seizure in her sleep, very high fever and a tube in her nose to suction this crud from her lungs.”
Lexy was put on a feeding tube through her nose, and her medications were increased. Then she caught a common cold.
“The seizures multiplied,” Felicia said. “She aspirated on her own saliva, which brought on pneumonia and her lungs shut down. They had her on 20 liters of oxygen, the most ever, and her stats were still dropping.”
Lexy had previously been in intensive care due to her seizures and hospitalized repeatedly, but never longer than four days, said Felicia. As of Tuesday, Lexy had been in the ICU for seven days, eight days total at Vanderbilt.
On Tuesday, she woke up and began to seem better. Felicia is hopeful of being able to take her home by Thursday or Friday, but she is more afraid to take her home than at any previous time. And though CBD, which comes in an oil form and is not smoked, remains unproven through clinical testing, Felicia intends to fight for it in Tennessee, while contemplating a move to Colorado, as other Tennessee families of children with pediatric epilepsy have already done. She says she has had enough.
‘Enough is enough’
Penn Mattison, Tennessee father of a 2-year-old girl with an intractable pediatric epileptic condition, hit the wall along with his wife, Nicole, several months ago. The Mattisons are among several families that have already made the move to Colorado, where a high CBD-low THC strain of marijuana known as “Charlotte’s Web” is available.
Mattison was in Nashville on Wednesday, testifying before legislators once again, though he no longer lives in the state and is currently unemployed, as is his wife. He flew back using donations. He says he returns because of families like the Harrises who, being a military family, don’t have the ability to leave the state.
“Our hearts go out to the Harrises,” Mattison said in a phone interview on Wednesday after testifying before the full House committee on health. “It’s a tough situation, as my wife and I know only too well.”
The Mattison’s daughter, Millie, was diagnosed with infantile spasms at 3-months-old.
“She was having 300 seizures a day,” said Penn. “As she got older, she began having myoclonic (cluster) seizures along with the infantile spasms. We sought treatment at Vanderbilt, then Cincinnati Children’s Hospital, with some of the top specialists in pediatrics, genetics and neurology in the country.
“Name the treatment, we tried it. Nothing seemed to help. Last summer, Millie nearly died. Her kidneys shut down from the diet they had her on. After her last EEG (electroencephalogram, used to measure brain activity), the doctors wanted to up her pharmaceuticals, and we said, ‘Enough is enough.’
“We heard about the medical marijuana in Colorado, talked to the families using it there and we thought it was just time. Millie was not getting any better, and we had nothing to lose. In a matter of three weeks, we sold our business and we were gone.”
‘Whole-plant’ vs. CBD-only controversy
While Felicia Harris is considering asking Tennessee legislators to support CBD-only legislation to fast-track help for her daughter, like others have done in various states with pending medical marijuana legislation, Mattison rejects the idea.
“What we’re finding in pediatric epilepsy is that THC is needed in some cases more than previously thought,” Mattison said.
“That’s why I’m looking at states like Florida, Georgia, Alabama and Kentucky that are introducing CBD-only legislation where the CBD oil can only have three-tenths of one percent THC in it, and the fact is, that’s only going to help two percent of the patients they’re trying to help, and probably only a quarter of one percent of the total population that can be helped with medical cannabis.
“I think ‘whole-plant’ legislation is what is needed. I do realize that certain patients can be helped right away with a CBD-only bill, but it’s not fair to leave all the other patients out. I firmly believe that.”
Prognosis: Not good
Neither Mattison nor his friend, Doak Patton of the Tennessee chapter of NORML (National Organization for the Reform of Marijuana Laws) has much hope that H.B. 1385, the Koozman-Kuhn Medical Cannabis Act, is going anywhere in 2014.
H.B. 1385 original sponsor Rep. Sherry Jones (D-Nashville) agrees the measure is a long way from passage, though she has some hope that it will emerge from the health subcommittee next week for a later vote of the full committee. But she said that a wholly negative image of marijuana is stuck in the heads of many of her fellow legislators in the House and Senate.
“They still think a 2 year-old is going to be smoking a joint,” she said in a phone interview late Wednesday evening.
She said that she is going to try to talk to three of the Republicans on the health subcommittee (the committee members are five Republican, three Democrat with a Republican chair) to see where they stand on the bill before they leave Nashville on Thursday evening.
“Right now,” said Jones, “I have three Democrats who are all for it and one Republican – but I can’t say his name – who could be number four. But he doesn’t want to be four, he would rather be number five. So I have to convince one of these other Republicans to help us get this out of the subcommittee.
“Then it goes to the full committe, and then it gets worse. They don’t understand. They don’t have a good reason. They want to talk about ‘dosing’ and kids smoking, but it’s not about any of that…”
‘Maybe next year’
Ten patients with various conditions ranging from epilepsy to cancer and traumatic brain injury/post-traumatic stress suffered in combat testified on Wednesday before the full committee. Next week’s presentation will be smaller prior to the subcommittee vote.
Jones said there were few questions asked, and that health subcommittee chair Barrett Rich (R-Somerville), who she said was definitely opposed, did not ask a single question.
“It was so sad to sit there and listen to all those people testify,” Jones said, “and know that there were legislators sitting there thinking they’re a bunch of terrible people because they want to use medical marijuana.”
Repeated attempts by The Leaf-Chronicle to contact Rich regarding H.B. 1385 went unanswered.
Said Jones, “I’m hopeful for the subcommittee anyway, but after that, we’ll see.
“If the Republicans would just poll their constituents, they would find at least 60 percent support this (the medical marijuana bill). But I expect them to maybe come back next year when one of them will sponsor it and maybe pass it then.”
A bill to legalize CBD oil passed out of a Kentucky State Senate subcommittee last week.
Philip Grey, 245-0719
Military affairs reporter
HERE ARE A FEW LINKS ON KENTUCKY’S CURRENT MEDICAL MARIJUANA BILLS!
If House Bill 350 becomes law, the use, distribution, and cultivation of medical marijuana would be permitted under Kentucky law to alleviate the symptoms of patients diagnosed by a medical provider with a debilitating medical condition. A licensing and registration system to allow the use, growth, and distribution of the drug would be established through protocols set out in HB 350, which is sponsored by Rep. Mary Lou Marzian, D-Louisville.
To read more, click here.
Cannabis oil bill passes Senate committee
A measure that would legalize limited medical use of cannabis oil was approved by the Senate Health and Welfare Committee today.
Senate Bill 124, sponsored by Committee Chair Julie Denton, R-Louisville, and Sen. Whitney Westerfield, R-Hopkinsville, would allow doctors at the state’s two university research hospitals to prescribe cannabis oil to patients.
Advocates of cannabis oil use say it is effective at treating certain health conditions, including epilepsy.
“This is going to open the door for some first steps on this issue,” Denton said.
SB 124 now goes to the full Senate for further action.
MORE IN DETAIL INFORMATION HERE… (use search term: medical marijuana)
Please input the BILL number in the search on the website link and it will bring it up.