Linda and Chris Lloyd were at their wits’ end. Their 7-year-old son, Henry, who’d been having seizures since he was 2, had been on 13 different pharmaceutical drugs and homeopathic medicines to alleviate the symptoms of his severe epilepsy.
The Pawcatuck couple had done all sorts of research about medical marijuana and had even thought about moving to a state where it was already legal to administer it to a child. So when it became legal in Connecticut on Oct. 1, the two started the process of getting a physician’s approvals and finding a dispensary from which to obtain the product for Henry.
Henry was the first child in Connecticut to be approved for medical marijuana.
“Some people have had difficulties finding two physicians who sign off on medical marijuana because unfortunately a lot of hospitals and doctors don’t support it, but we were lucky to have two doctors who were very supportive of us taking this step,” she said. “This is truly the last option we have left to try. We’re optimistic.”
Before taking medical marijuana, Henry was having about 45 to 50 seizures a month and numerous smaller seizures that weren’t detected. He’s been taking it for a month now and has had some stretches where he’s gone three days without a seizure.
Because it’s not a pharmaceutical with strict dosing, Lloyd and her husband started out with a very small dose and have been making adjustments from there as Henry responds to it.
The medicine, which is a brown oil, is given to Henry three times a day. Unlike a pharmaceutical, which might be longer-lasting in the system, the cannabinoids, known as CBD, don’t last very long.
One of the biggest challenges is that it’s illegal to administer it on school grounds, so Lloyd has to take Henry out of school once each day and give him his dose.
“It’s disruptive to his day and to mine,” she said. “I have to take him off of West Vine Street Elementary School grounds, so I just drive him down the road and give it to him. It’s an odd thing having to pull him out of school each day.”
As the designated caregiver, Lloyd is the only person who is legally allowed to administer the oil to Henry, so she must be available every day and if she goes anywhere during the time he has to take a dose, Henry has to go with her.
“It’s all worth it,” she said. “I’ll do anything at this point. There are a couple states that have made it legal to administer on school grounds and I’ve been working to contact senators and representatives to make it legal here too.”
One thing Lloyd has tried to emphasize to people who ask is that the marijuana is given in an oil form in very small amounts and has very little THC in it.
“Medical marijuana is administered to pediatric patients as an oil that given orally, never as a smokeable form,” she said. “The dosing is conservative and low in THC, so they don’t get the ‘high’ effect that people often associate with marijuana. It’s a natural medicine that is being offered to children with life-threatening illnesses that have exhausted all other conventional options.”
Through their research and efforts to get medical marijuana for Henry, the Lloyds have met many families who are having difficulty finding doctors to approve their registration or who live in a state where it’s not legal.
“How could any state take away their chance to try it for their child?” Lloyd said. “There are kids that are much worse off than Henry and don’t have any other options left. I have friends with kids who need it desperately but can’t get doctors’ support. I truly feel for these parents who are going through that.”
Aside from her advocacy efforts to reduce the restrictions and make it easier for parents to obtain, Lloyd is also working to raise funds to purchase a service dog for Henry that would be with him all the times, would alert others when he’s having a seizure and would offer him a level of comfort and security. At the moment, he can’t be left alone because they never know when he might have a seizure.
Four Paws for Ability, the organization Lloyd is working through to obtain a trained dog, tailors each dog to the child it will belong to. Once the fundraising is done, Lloyd has to send a shirt Henry wore during a seizure to the organization, which then uses it to do extensive training with the dog.
“When he’s about to have a seizure, he gets very impulsive, and a dog would help with that and allow for much more independence,” she said. “I think it would change our lives. He has a lot of anxiety about having a seizure, and a dog would comfort him and also allow him to be more of a normal boy.”