Baby with rare genetic disorder undergoes medical marijuana treatment in Colorado
KINGSTON, N.Y. -- There’s a dramatic change in 11-month-old Mabel Grace Tangney-Decker, and her mother likes what she’s seeing.
The two left Kingston for Colorado in January, hoping to find something -- anything -- that would help the baby in her battle against CDKL5, a rare X-linked genetic disorder characterized by seizures and severe neurodevelopment impairment.
"I see her more aware of herself and more aware of me, and what mother doesn’t want that?" said Carly Tangney-Decker. "I see her making better eye contact, and her sense of balance has improved."
Since Mabel has been on cannabidiol, or CBD, a marijuana compound being used for medicinal purposes in states like Colorado, she also has looser hamstrings, her mother noted.
"Tight hamstrings kept her from being able to sit. Her physical therapist noted that they were no longer tight. The CBD relaxes the tense muscles."
Tangney-Decker is among thousands to uproot and flock to states like Colorado where medical marijuana is legal and being used to treat those who are suffering from chronic illnesses.
Mabel Grace has only been on CBD, an oil extracted from the marijuana plant, for about three weeks, and though her seizures haven’t stopped, her mother is heartened by the other improvements.
"She’s sitting by herself for about five or 10 seconds before she falls over, and she even made her first attempt to crawl," Tangney-Decker said.
All that aside, the Ulster County woman said she misses her husband, Jeff Decker, who remains behind in Kingston, working to pay the bills and maintaining the family’s home.
"I’m out here all alone with a special needs kid," Tangney-Decker said. "I’m on the other side of the country for my whole support system.
"It’s really a very frustrating."
Without a doubt, legalizing medical marijuana has become a smoking hot topic nationwide.
Maryland became the 21st state on April 14 to adopt a measure for its medicinal use, and Gov. Martin O’Malley signed a companion bill into law decriminalizing the possession of small amounts of marijuana.
All eyes now turn to New York, which is considering some form of a medical marijuana program.
While the Compassionate Care Act has already passed in the state Assembly, it remains stalled in the Senate.
Many are optimistic it will move forward when lawmakers return for session on April 28.
"We believe once it’s brought to the floor, it will pass," said Gabriel Sayegh of the Drug Policy Alliance.
"The reason we are so confident is you’ve got an enormous amount of people willing to support this bill. We understand it’s not done until it’s done, but we’re closer Š than ever before."
Medical professionals also are weighing in on the discussion, particularly those who have been personally touched by the issue.
Dr. Laura Decker, a Saugerties physician, is Mabel’s grandmother and has become a vocal advocate in the medical arena.
She just returned from the New York State Medical Society’s annual convention in Tarrytown, where she addressed the topic.
"I think that generally, with the proper safeguards in place, most physicians are in favor of it being a medical option," said Decker, pointing to a recent poll published on www.medscape.com.
"Their acceptance is based on a small but growing number of good medical studies showing effectiveness for certain conditions. The medical community doesn’t want to do this by popular vote or by poll. They have to feel convinced from studies that it makes good sense," Decker added.
Up to this point, there haven’t been a lot of larger studies because the Drug Enforcement Administration classifies marijuana as a schedule-one drug, she said.
About 160 smaller studies have been conducted in states like California and countries like Israel, Decker noted, but because of the DEA restrictions, it’s virtually "impossible" to pursue larger-scale studies.
It has even presented problems for Dr. Orrin Devinsky, the director of The Comprehensive Epilepsy Center in New York, she noted.
While he got FDA approval to conduct a clinical trial studying the safety of cannabidiol in children with epilepsy, it hasn’t yet begun because of the DEA restrictions and red tape, Decker said.
"That is what’s bogging him down. It has basically grounded him to a halt."
While she keeps her eye on such developments, Decker’s focus right now is on her granddaughter, who appears to be making strides since she started taking the CBD daily in a measured baby dropper.
"She’s able to sit up unassisted. It’s really improved her muscle tone. It’s not a miracle, but it’s helpful. We’re going to stay the course here," Decker said.
Mabel Grace’s maternal grandmother, Cindy Tangney, concurs and has become directly involved in the battle in Albany to get the Compassionate Care Act passed.
"One of the things I feel very frustrated about is that it’s being discussed on a political level instead of letting doctors make these decisions for their patients," said Tangney, who lives in Orange County.
"Mabel’s doctor wants her to have medical marijuana. They should be empowering patients with another tool."
Meanwhile, both sets of grandparents are frustrated that the lack of such laws in New York has forced a young family to temporarily break up.
"This family is separated Š and that’s not the way people should live. Shame on the politicians," Tangney said.
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