November 17, 2018
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Maine family seeks solutions to help child with epilepsy

DEDHAM, Maine — Wyatt Beauchamp, 6, loves to dream up useful inventions, gets easily exasperated by his little sister and wears a hockey helmet while giggling and goofing off on the couch in his living room.

While this all sounds like par for the course for a first-grader, it isn’t. Wyatt has to wear his new hockey helmet — affectionately called “his lid” by family members — because he has epilepsy. Dozens of times per day, sometimes as many as 100 times, there is a sudden surge in the electrical activity in his brain and he has a seizure. The seizures can be almost unnoticeable, causing Wyatt to abruptly check out and stare into space for a few seconds. But they can also be big and frightening, as his slight body stiffens, then goes limp, often falling unprotected to the floor, which is why the helmet isn’t optional. Then he goes into convulsions.

After the seizures, sometimes he goes into a rage-filled temper tantrum that also seems like it may be connected to the epilepsy. But often he scrambles like a frightened bear cub onto his mother’s lap, in search of snuggles and reassurances. Then he runs off to play or eat a snack or return to any other normal kid activity that will last only until the next time there is a misfiring in his brain.

“I have to surrender a little bit to fate and trust that we are capable of walking this path,” his mom, Kristin Beauchamp, said. “Because that’s all there is to it. We’re on it, and we have to walk it strongly for him.”

Walking it strongly, to her, means the family is leaving no stone unturned as they seek ways to reduce the numbers of seizures he has, including trying medical cannabis, and search for the underlying cause of his epilepsy. It also means she has to find a way to balance his needs and care with the rest of the life and activities going on at Lone Spruce Farm, the family’s homestead in Dedham. Wyatt’s sisters, 4-year-old Ruby Beauchamp and 16-year-old Stephanie Norman-Beauchamp are home-schooled, just like him. The family also has dogs, chickens and guinea hens to take care of. They have a farmstead to maintain, where they sell homemade herbal tinctures and other concoctions, the eggs they gather from their flock and the loaves of bread Kristin Beauchamp bakes in her wood-fired outdoor oven.

And through it all, by day and by night, there’s the need to keep a close and watchful eye on Wyatt, whose ever-present safety gear still doesn’t always keep him from getting hurt during his seizures. It might seem like more than one family can manage, but they don’t have any other options. His mom acknowledges that she and her husband, Tom Beauchamp, have had to fight the urge to enrobe him in bubble wrap, but they know that’s neither practical nor desirable for a little boy whose life they want to be as normal as possible.

“What do we do other than strap him to a chair, which might as well be a death sentence for a 6-year-old boy?” Kristin Beauchamp asked.

Treating ‘the worst of the worst’

The Beauchamps feel as though they have been on this hard road forever, but it’s really only been a couple of years. Wyatt first began having the staring spells, called “absence seizures,” shortly after his fourth birthday. It was just a month after he was bitten by a tick in New Jersey, where the family was then living. His mom suspects the timing of the two events is not coincidental — some ticks in the United States carry pathogens that can cause a host of problems and diseases above and beyond Lyme disease. But when most doctors learn her husband also had seizures for a time in his childhood, they figure Wyatt is genetically predisposed to have them too, Kristin Beauchamp said.

“I believe there was a catalyst, and for Wyatt I think it was a tick,” she said. “The tick has just been a wild card in my head.”

Regardless of exactly why the seizures started, when he was given his diagnosis, he was prescribed standard pharmaceutical drugs that didn’t seem to slow down the fast-moving escalation of Wyatt’s epilepsy, Kristin Beauchamp said.

“He changed before our eyes,” she said.

Desperate to help him, Wyatt’s parents tried different drugs, ones that weren’t made with dye or corn syrup, then put him on a ketogenic diet, which is high fat and low carbohydrate. It can control seizures in some people with epilepsy, but it didn’t seem to help Wyatt, whose mood also plummeted on the unusual diet plan. Traditional doctors only wanted to prescribe more and more drugs, which didn’t seem to be working, Kristin Beauchamp said. And so the family began its ongoing quest to find something else that might help their boy find relief from the daily onslaught of seizures.

“That’s when I began digging,” Kristin Beauchamp said.

They tried naturopathic medicine, holistic medicine, Chinese medicine, special diets, herbs, tinctures and more, but Wyatt’s epilepsy seemed to be worsening, so the family tried something new: medical marijuana. In November, Wyatt began taking very small doses of cannabidiol, or CBD, which proponents believe can reduce frequency and severity of seizures. He is under the care of Falmouth-based Integr8 Health, where the doctors and nurse practitioners are experts in medical cannabis.

“Different seizures respond to different types of cannabis,” Laurel Sheppard, a nurse practitioner at the practice, said in general about the patients she sees at the practice. She did not talk specifically about Wyatt. “We’ve been able to see significant improvement in frequency of seizures, severity of seizures and recovery period. THC [one of the chemical compounds in cannabis] and CBD work on the receptor sites in the brain that control the epilepsy itself.”

So far, Integr8 Health practitioners in Falmouth have treated about 80 pediatric patients from all over the state, most of whom have epilepsy, she said. Others have cancer or other chronic diseases.

“The patients we see are the ones that have failed conventional medicine. We see the worst of the worst,” she said. “It’s very rewarding, of course, to help these kids.”

At first, it looked like Wyatt was going to be one of their success stories. When he began taking the microdoses of CBD oil in November, he went from having from 70 to 100 seizures per day to 30 seizures and then dropped even more, into the single digits.

“We were at five, and we thought we’d nailed it,” his mom said.

Setback and questions

The respite didn’t last. He’s since gone back up in the frequency of his seizures and has about 50 per day. The seizures, of course, are affecting nearly all aspects of family life. Before the epilepsy began, Wyatt reveled in his independence, and it was important for his mom to encourage that.

“As a home-schooler and homesteader, my core belief is that kids should be able to go get lost for the day,” Kristin Beauchamp said. “Now something as simple as gathering eggs he can’t do unsupervised.”

These days, the family is fully immersed in what she calls “the new normal,” she said, adding that her eldest daughter, Stephanie, has been incredibly important in keeping things afloat while her husband is at work during the day.

“We take shifts, even at the table,” Kristin Beauchamp said. “She’s my co-pilot, and this ship would go down without her. She’s a second set of hands and eyes and another empathetic heart in the house.”

Meanwhile, in the last few months, Wyatt has had to increase the level of safety gear he wears. He started with what his mom called an “armored beanie,” then had to upgrade to a shiny new ski helmet. But even with the helmet, he was hurting himself because it didn’t protect his face, his mom said. He broke his nose twice, and it was clear something needed to change for him — and also, maybe, for her.

“Something that’s really changed for me lately is that I’ve started to let myself feel vulnerable and that we’re not OK. Other people started to reach out, and all of a sudden there’s been an outpouring of support,” she said.

Recently, things have seemed harder, and she wrote about that on social media, which wasn’t easy for her to do. But then a friend who saw the post reached out to Brewer Youth Hockey to ask if there was any way Wyatt could use one of the organization’s hockey helmets.

“She was at my house with it within an hour,” Kristin Beauchamp said.

It was just what Wyatt wanted.

“I knew that a hockey helmet would do it,” he said, adding it was comfortable and heavy on his head. “It just protects me. That’s all it does.”

The hockey organization is not stopping there, either, Kristin Beauchamp said.

“They’re supporting a custom fitting for Wyatt to be fitted for a new helmet that suits his needs best,” she said. “We want to thank them.”

Others have been helping her family, too. Their Happytown Road community has given Wyatt a group of good friends who see what he can do instead what he can’t.

“His buddies are always reminding him what a superhero he is,” Kristin Beauchamp said.

And members of the local medical marijuana caregiver community have been helping her family brainstorm new treatment possibilities and also feel less alone in their struggle to help Wyatt. A new oil formulation that Wyatt just started in the middle of March seems to be having a positive effect.

“Time, energy, expertise and true compassion for our boy came from strangers,” she said. “These strangers are now family.”

Even though the family’s path has been hard and at times scary, it has been made a little easier thanks to the love and care from their expanding community. On this path, there is hope. And the people who are on it are always striving to find a better future for the little boy who wants to build railroads, roads and houses one day.

“Wyatt is a silly guy. He’s funny. He’s creative, hardworking and energetic. That’s still him in there. It might get interrupted a bit,” his mom said. “A miraculous outcome for Wyatt would be seizure freedom. A good outcome would be to have epilepsy looked at differently within the community and beyond. I think there’s so much that’s not understood. I will keep looking, and I believe that maybe there’s a piece of information that would stop somebody else from having such a long road.”


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