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    Tuesday, May 14, 2024

    Pawcatuck family hopeful medical marijuana will help their son

    Henry Lloyd tells his mother, Linda Lloyd, about his day at school Friday, Oct. 14, 2016. Henry has a severe form of epilepsy and was the first child in the state to receive medical marijuana after the new law legalized it for minors. (Dana Jensen/The Day)
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    Stonington — After school Friday, 7-year-old Henry Lloyd’s father, Chris Lloyd, gave his son a few drops of brownish oil under his tongue, carefully measuring the dose from a calibrated syringe.

    “You don’t like the taste?” the boy’s mother, Linda Lloyd, asked her son when he grimaced. But within a few minutes, the foul taste had disappeared as Henry sat beside his father on the couch of their home, snacking on crackers as he drew a picture of a cat.

    “You start out with a super tiny dose and make adjustments from there,” said Linda Lloyd, referring to the medication she and her husband began giving their son a week ago. “We’re being super careful and taking it super slow.”

    As the first parents in Connecticut to be registered to administer medical marijuana to their child, the Lloyds are keeping a close eye on the effects of the oil, which is high in cannabidiol, or CBD — the therapeutic ingredient in the marijuana plant — and low in tetrahydrocannabinol, or THC, the ingredient with hallucinogenic properties.

    As soon as the state law legalizing medical marijuana for minors took effect Oct. 1, the Lloyds began getting the needed physicians’ approvals and working with one of the medical marijuana dispensaries in the state to obtain the medication for their son. They paid $150 for their initial supply — medical marijuana is not covered by health insurance plans — but are uncertain yet how long it will last as they adjust the dosage to find his “sweet spot.”

    Henry, a second-grader at West Vine Street School, has a severe form of epilepsy that had been causing frequent, debilitating seizures that were not being well controlled by prescription medications, which also have harsh side-effects on his behavior, kidney function and ability to regulate temperature, Linda Lloyd said.

    “Our goal is to reduce his seizures and get him off the pharmaceuticals as much as possible,” she said.

    During his first week on the medication, Linda Lloyd said, her son had one bad seizure during school. That’s less frequent than many previous weeks, she said, but there are many more weeks ahead of dose adjusting and watching before they can draw any conclusions about the effectiveness of medical marijuana.

    “It’s really too soon to tell,” she said. “But some weeks, he’d be having them every day.”

    Leslie O’Brien, spokeswoman for the state Department of Consumer Protection, said that thus far, two parents besides the Lloyds are registered to receive medical marijuana for their children, and a few more applications are pending.

    The law, approved by the state Legislature last year as an expansion of the 2012 law that legalized medical marijuana for adults, allows parents and caregivers to obtain medical marijuana for their child with the consent of two doctors if their child has one of six relatively rare conditions — cerebral palsy, cystic fibrosis, irreversible spinal cord injury with complications, severe epilepsy, terminal illness requiring end-of-life care and uncontrolled intractable seizure disorder.

    “We never anticipated there would be large numbers of people seeking this,” O’Brien said.

    One of those awaiting registration with the state is Cara Tarricone of Windham. She has submitted information for the registration so that she can obtain medical marijuana for her daughter West, who also has severe epilepsy and frequent seizures. On Wednesday, both she and the Lloyds attended a ceremony at Connecticut Children’s Medical Center in Hartford to recognize that the new law had taken effect.

    “This past year has been really tough for her, with a lot of massive, complex seizures,” Tarricone said of her daughter. “Any reduction would be great.”

    Laurie Zrenda, pharmacist, owner and manager of Thames Valley Alternative Relief in Montville — southeastern Connecticut’s only medical marijuana dispensary — said parents registered with the state to obtain medical marijuana for children would first call to make an appointment. They would meet with a pharmacist, who would help determine which formulation and dosage to try first.

    Currently, medical marijuana for children is only available as an oil, she said, but capsules are expected to become available. Under the state law, medical marijuana products sold for children cannot be smoked, inhaled or vaporized.

    Linda Lloyd said she’s been researching medical marijuana for children for the past three years, joining online parent groups that support it and hearing about the experiences of families in other states where it already was legal. One of the main lessons she’s learned, she said, is that each child who receives it is uniquely affected, and that there is a trial-and-error period of at lest several weeks to find just the right formulation and dosage.

    “Parents are the ones who pushed for this,” she said, referring to the state law. Next week, she said, Henry will visit his neurologist at Boston Children’s Hospital to have a blood test, an important step to determine how the medical marijuana is affecting the prescription drugs he still needs to take.

    “It can affect how you absorb other medications,” Linda Lloyd said.

    During his first week of taking medical marijuana, Henry is sleeping better at night, which in turn means that his mother also is able to sleep with fewer interruptions.

    “He was a very restless sleeper, but that’s stopped,” she said.

    The pharmacist, she said, warned them that Henry might be more tired than usual when he first started taking medical marijuana, but that’s minor compared to the severe side-effects from his other medications and the potential benefits, Linda Lloyd said.

    “The seizures affect his memory and cognition,” she said. “If we can reduce the seizures, he should be able to make some gains.”

    Now, Henry receives one dose in the morning and one after school, but probably also needs one in the middle of the day, Linda Lloyd said. Under current state law, however, medical marijuana cannot be given on school grounds.

    “That’s the next part of the law that needs to be changed,” she said.

    j.benson@theday.com

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