Family hopes drug will help 11-year-old boy
Article by WMUR9
Colton Schools, 11, has Dravet syndrome, a form of epilepsy that has ravaged his body almost since he was born.
“If I had to describe it in one word — horrible,” said his mother, Janice Taglieri. “It started for us with Colton at a very young age. So we’ve been dealing with this since he was about 3 months old.”
Dr. Richard Morse has been treating Colton since infancy. When Colton was 3 or 4, Morse diagnosed him with Dravet syndrome.
“The average child with Dravet syndrome is prone to prolonged convulsions. And not just with fever, but in general, status epilepticus — a prolonged seizure state,” Morse said.
Morse said there are two or three cases of Dravet syndrome in New Hampshire and about 5,000 nationwide.
Traditional seizure medications were powerless to stop Colton’s symptoms. The most recent grand mal seizure in October was so severe and prolonged that Colton was flown to Dartmouth-Hitchcock.
“My husband and I kept looking at each other, saying, ‘He’s 11. He’s 11,'” Taglieri said. “Here he is, intubated on a breathing machine, and all we can say is, ‘He’s 11.'”
At the age of 2, children with Dravet syndrome start to lose ground cognitively. Speech and language are often delayed, and autistic tendencies are exhibited.
The children are also at a much higher risk for sudden unexplained death in epilepsy.
Word spread quickly a few years ago about a girl in Colorado whose mother happened into what appeared to be a miracle cure: marijuana. The extract is called cannabidiol or CBD.
“Which is an extract of the cannabis plant,” Morse said. “It’s the non-psychoactive component. The THC is the psychoactive component that everyone knows about, and CBD is the unnoticed, unknown component, which is very active and promising in epilepsy.”
Colton is part of an international drug trial at Dartmouth-Hitchcock that’s testing the effectiveness of CBD on Dravet syndrome.
“We’re a little behind, and I feel like the medical profession has missed an opportunity to study it properly, and it’s grown quite a bit in the nonscientific, nonmedical world,” Morse said.
The Food and Drug Administration and the Drug Enforcement Agency regulate the medication, even though it has no psychoactive properties because it contains no THC. DEA regulations require the medication to be locked in two safes in the investigational pharmacy.
“When they go to get the drug to dispense it, they have to have two people that go together and check and double check,” Morse said. “They don’t quite wear handcuffs, but it seems almost like it.”
The strict, double-blind study lasts for three months. Twice a day, Colton is giving either CBD or a placebo. His family and doctor don’t know which he’s receiving.
“It’s in a liquid form, and the CBD is dissolved in sesame oil as the main base with strawberry flavoring,” Morse said.
Morse said he’s delighted to be part of the study that he called long overdue. He said that many parents “go rogue,” administering unknown concentrations of CBD via enriched hemp oil in an effort to help their children.
“It’s probably going to be a good drug,” he said. “It’s probably going to help a good number of people, but it’s not a cure-all.”
Taglieri said that when the study is over, she’ll do whatever it takes to get CBD for her son. Like other Dravet families, Taglieri said she has considered moving to Colorado, where the medication is easily accessed.
“Before you criticize me, I invite you to build a day in my world and tell me you wouldn’t do the same thing,” she said. “Seeing your child on a ventilator, knowing he’s not breathing on his own — you’re going to criticize me?”
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