DEDHAM, Maine — Wyatt Beauchamp, 10, scrambled to the top of a pile of haystacks in his family’s high-tunnel greenhouse Tuesday morning, a vantage point that gave him a good view of the excitable flock of chickens that live at his family’s Lone Spruce Farm.
He wore a red plaid jacket and a baseball cap, and was confident and full of mischief as he swayed on the stacks, made designs in the frost on the greenhouse roof and threw a handful of hay down at his mother. All the while, Wyatt talked a mile a minute about remote controlled cars, his pet fish and his love of heavy machinery.
It was a very normal morning for a 10 year old. But for Wyatt, who has epilepsy and has struggled with debilitating seizures since just after his fourth birthday, normalcy felt remarkable. Not that long ago, he was enduring as many as 200 seizures a day.
That has changed for the better.
It has been 27 days since Wyatt’s last seizure — nearly a month of what his mom, Kristin Beauchamp, is beginning to consider a remission and what for him has provided more opportunities to just be an energetic growing boy.
“It’s easier because I can do things. I don’t have to be supervised as much,” he said.
And that’s huge, his mom said. Before, things as ordinary as just walking up and down stairs have never been unsupervised, for fear that he would have a seizure and hurt himself.
“There are so many little things, freedom, that we all take for granted,” Kristin Beauchamp said. “Wyatt had a shadow every second. It was a lot for a kid.”
A new diagnosis, and hope
For Wyatt, his journey from 100 to 200 seizures a day to where he is now has been a long one, full of complicated questions and uncertain answers. Along the way, he and his family have benefited from the caring of their community and the support of a top-notch medical team at Massachusetts General Hospital.
Something else the Beauchamps believe helped is a March 2017 interview with the Bangor Daily News. At that time, 6-year-old Wyatt was wearing a hockey helmet almost all the time to protect his head from the frightening drop seizures, which caused him to go limp, fall down and go into convulsions.
The article included a video of one of Wyatt’s seizures, and a neurologist from across the country happened to see it and noticed something. He got in touch with the family, letting them know it was possible that Wyatt had something called “myoclonic atonic epilepsy,” also known as Doose Syndrome.
That diagnosis has been key to Wyatt’s improvement, his mom said.
From left (clockwise): Kristin Beauchamp, 39, and her son Wyatt, 10, talk about Wyatt’s epilepsy while in their greenhouse in Dedham on March 2; Wyatt Beauchamp (right) plays on bales of hay as his mom, Kristen, watches on in Dedham on March 2; Wyatt Beauchamp sits on equipment while playing at his family’s farm in Dedham on March 2. Credit: Natalie Williams | BDN
“I’m a fighter and a really strong person, but I was at a very low point at that time,” Kristin Beauchamp said. “We had cycled through everything, and he only got worse.”
They went to a new neurologist and said they had been told to look for certain key indicators of Doose Syndrome. In May 2017, the doctor found it. By July, Wyatt began a treatment regime under the guidance of his team at Massachusett General Hospital’s Pediatric Epilepsy Program. It included medications and a medical-grade ketogenic diet in which all components must be weighed to the tenth of a gram.
By November of that year, his seizures had diminished from 200 to approximately 50 a day. By late 2018, one year later, he stopped having drop seizures with their scary falls to the ground. Wyatt no longer had to wear his helmet.
“It felt like a whole better world,” Kristin Beauchamp said.
Still, the diagnosis was tough to hear in some ways. Doose Syndrome is an uncommon childhood epilepsy syndrome that accounts for just 1 to 2 percent of all childhood-onset epilepsies. One of its hallmark features is that it’s hard to treat, and children who have it may not respond well to medication. And while two out of three children generally outgrow their epilepsy eventually, about a third have persisting seizures. Some seizure disorders lead to shorter life expectancy.
“It can be a crippling diagnosis,” Kristin Beauchamp said.
But for them, it marked the beginning of a turnaround, and she’s glad she let the world get a glimpse of Wyatt’s seizures and the family’s hard struggle. They also connected with others from the epilepsy community in Maine and New England, which has been a blessing.
“There’s so many ripples that came from making ourselves vulnerable,” Kristin Beauchamp said. “So much support and connection. A sort-of family came from that moment. When you allow yourselves to be vulnerable, that’s when the healing began.”
Love wrapped around
From left (clockwise): Wyatt Beauchamp, 10, escapes from the wind during a cold and blustery day in Dedham; Kristin Beauchamp talks about her son’s epilepsy on March 2 in Dedham; Wyatt Beauchamp sits on a pile of hay bales while he talks about his experience with epilepsy in Dedham on March 2. Credit: Natalie Williams | BDN
She is still emotional when recounting the kindnesses her family experienced from strangers who noticed Wyatt having seizures and helped. There was the time when he was having a seizure in the grocery section of Walmart and a woman near them sprinted across the store to the bedding area, grabbed pillows and brought them back to cushion him.
The time when a man in Hannaford threw down his grocery bags when he saw Wyatt starting to have a seizure and dove down to help Kristin Beauchamp catch her son.
And then there was a woman at a fair who just sat next to her and rubbed her back as the anxious mom tried to help her son.
“I felt her around me. She told me I was doing a good job. I only looked up to see her walk away,” Kristin Beauchamp said. “She didn’t ask — she just was. She just provided comfort. I could feel from her that she was a mother or a grandmother, and she just wrapped all that love around me. I will never forget her, though I have no idea what she looks like.”
There are all kinds of moments of kindness and caring that have lightened the darkness of Wyatt’s epilepsy, she said. But there have been times when it’s been hard to be optimistic.
“There’s a lot of energy around holding hope. You have to give yourself permission to feel hopeless sometimes,” she said. “It’s hard when you’re waiting for your miracle. For parents with medically complex kids and kids with disabilities, it’s a big mental health package.”
As the days with no seizures continue, it’s possible their miracle has finally arrived. But she doesn’t want to count on that just yet. The seizures have stopped as mysteriously and suddenly as they began, and the family doesn’t want to assume Wyatt has outgrown them and that the break will continue. For now, they are being careful not to change anything about his diet or medications, because something is working, though they don’t know exactly what it is.
“It’s one day at a time,” Kristin Beauchamp said. “It’s a little akin to walking on thin ice. But this swath of time has been the greatest gift. A wonderful break. Wonderful freedom.”
For Wyatt, the days without a seizure have given him the chance to focus on other things. He has been baking huge batches of dog biscuits, caring for the fish that live in the tanks that line his bedroom walls and dreaming about trying his hand at a jackhammer one day.
“I can do things freely now,” he said.