Lloyd, one of the first parents to join the state’s expanded medical-cannabis program, is in the vanguard of a potential health care revolution for children suffering from extreme neurological disorders and terminal diseases.
“Medical marijuana is our last line of treatment for him,” Lloyd said this week minutes after buying the cannabis extract that 7-year-old Henry will take every day. The liquid marijuana is low in THC — marijuana’s psycho-active compound — and higher in cannabidiol, CBD, which has been found to curb neurological ailments.
So on Thursday, Lloyd and her husband Chris start using an eye dropper to give Henry a dose of the medication that a pharmacist at a Branford dispensary deemed would not the interfere with the boy’s other anti-seizure medication.
They will start with an extract that has been linked to helping adult patients with epilepsy. Over the last five years Henry, now a second-grader, has been on 13 different drugs. He currently takes the anti-convulsants Zonegran and Banzel; with ativan, anti-seizure treatment, and the sedative Diastat for emergencies. He’s been on two different natural and holistic diets. In May, Henry had brain surgery in attempt to slow his cognitive decline.
Delaware and Connecticut recently became the 25th and 26th states, plus the District of Columbia, to approve medical cannabis for minors. Here is the entire list:
Alaska, Arizona, California, Colorado, Connecticut,
Delaware, the District of Columbia, Hawaii
Illinois, Louisiana, Maine, Maryland
Massachusetts, Michigan, Minnesota, Montana, Nevada,
New Hampshire, New Jersey, New Mexico, New York,
North Carolina, Oregon, Pennsylvania, Rhode Island,
Vermont, Washington,Wisconsin, Wyoming
Source: Americans for Safe Access
In addition, other states allow cannabidiol oil for pediatric use, including Alabama, Florida, Georgia, Iowa, Kentucky, Mississippi, Missouri, Oklahoma, South Carolina, Tennessee, Texas, Utah and Virginia, according to the ProCon.org website, siting state lws in those states.
“Actually he has gotten worse and this is our last hope,” Lloyd, 45, said. “He does miss a lot of school and things that a typical kid would do.”
Lloyd, who has put her career as a fashion designer on hold while trying to manage Henry’s health is trying to keep life as normal as possible for him.
Two of 200
As of October 1, parents and guardians of those under-18 can apply for the medical marijuana program, if they can get two doctors — including a child’s regular physician — to recommend them.
Children who suffer from Cerebral Palsy, Cystic Fibrosis, irreversible spinal cord injury with intractable spasticity, severe Epilepsy, intractable seizure disorder and terminal illness requiring end-of-life care qualify for the program. So far, only two families have registered among an estimate 200 eligible statewide.
Consumer Protection Commissioner Jonathan Harris said he is not discouraged by the low initial turnout of parents.
“We didn’t expect to get there immediately,” Harris said. “The good news is now minors with some really serious debilitating conditions have access to the medicine. It’s another option for good health care and treatment.”
Lloyd and her husband, a corporate communications marketer, have out-of-pocket costs of hundreds of dollars for the cannabis extract, which is not covered by insurance. If it works, Lloyd said it will be a small price for a better quality of life.
“I would pay anything at this point,” she said.
Lloyd is part of an informal group of Connecticut and New York parents with children suffering from brain disorders including Dravet syndrome, who gave often heart-rending testimony to legislative committees in their attempt to expand the medical marijuana law.
After years of controversy and debate, the General Assembly this year finally approved the measure, joining 26 other states and the District of Columbia in allowing various pediatric uses of marijuana.
A difficult choice
Other parents whose children suffer from seizures say they are having trouble getting two physicians to certify their children as eligible. Some parents, who fought for the inclusion of their children since the medical-cannabis law took effect in 2012, are glad to have the option, but for now, they are seeing their kids get better under traditional anti-seizure pharmaceuticals.
“I appreciate the people who supported it and made their decision based on fact,” Lloyd said.
Dana Haddox-Wright of Wilton, said that her daughter Ella, now 7, seems to be responding better to her pharmaceutical regimen for Dravet syndrome, a condition known for violent periodic seizures.
“Everything seems to be okay with Ella,” Haddox-Wright said this week. “We were fortunate to have decent a summer with her, which is rare. We’ve been talking quite a bit about it with her neurologist.
We’re not going to sign up with the medical marijuana right away. She is on two medications that have been shown to interact with CBDs.”
Haddox-Wright recalled that during the legislative battles — her own lawmaker, state Sen. Toni Boucher, R-Wilton, was an adamant opponent of medical cannabis — Ella had daily seizures.
Now, with the seizures spread out over weeks, they’re relying on traditional meds. Haddox-Wright said she has heard of other parents who are having trouble finding two physicians willing to certify other Dravet syndrome kids.
There are seven member families with eight children with the syndrome in Connecticut, but recent studies indicate that the disease’s incidence rate is one in every 15,700 to 21,000, said Mary Anne Meskis, executive director of the Dravet Syndrome Foundation, based in West Haven.
Lindsey Clark of Darien said she is holding off on joining, because her twins, eight-and-a-half-year-old Jeremy and Miles, are also doing better with Dravet syndrome.
“The boys are in a good state now, so we’re not adjusting their meds. If it takes a turn, that’ll be the next course of treatment,” said Clark, who also worked for the legislative inclusion of kids in the medical-cannabis program. “It’s great that we’re living in a state that has a kids’ program, so we don’t have to move to another state if we need it.”
No comments:
Post a Comment