'Now he sleeps a lot': Mother speaks up about son's traumatic brain injury caused by neurological disease

A Saskatchewan mother of a 15-year-old says her son’s life went from rambunctious to medically disabled after repeated head injuries triggered a neurological disease.

“It’s heartbreaking to watch your kid all the time not being able to live the life they were living before,” Sabrina Parenteau said. “Now he sleeps a lot.”

Parenteau’s son, Azarie, was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in March 2021 after suffering a seizure.

Doctors told her the condition was likely caused by traumatic brain injury.

“He’s been bullied at school and he had two concussions in a matter of a week. So by the time he went back from the first one he still wasn’t feeling great and then he got jumped again at school. And another concussion so, it’s – they’re figuring that’s what’s causing it for him,” said Parenteau.

Azarie said it’s hard to walk and he can’t do the activities he used to enjoy.

“I can’t bike like before. I have to take so many breaks so often because my body starts to feel weak. And swimming, I used to be able to swim and not have to place my feet down for 20-30 minutes, now a couple minutes and I feel like I can’t breathe and feel weak,” said Azarie.

Besides low energy, he sometimes sleeps for 18 hours a day, is lightheaded, faints and suffers from irregular breathing and an increased heart rate.

Cathy Pederson is the founder and president of the group and website Standing Up to POTS. She is a POTS syndrome researcher, holds a Ph.D. and is a professor of biology at Wittenberg University.

“POTS is a malfunction of the autonomic nervous system. And the autonomic nervous system is something you never think about unless it's not working. It controls things like heart rate, blood pressure, gastro-intestinal motility and all sorts of different functions in the body,” said Pederson.

According to Pederson, research has shown there are a wide variety of causes or triggers for POTS. Cases in teenagers have occurred after puberty, surgeries, car accidents, after receiving the HPV vaccine and viral infections.

“Forty percent get POTS through a viral infection,” she said. This is how Pederson’s daughter came to suffer from the condition.

She said POTS is a spectrum disorder so symptoms vary from mild to severe medically disabled. Some common symptoms include dizziness, migraine headaches and brain fog.

“That makes it a lot harder to diagnose and also to treat it.”

She estimates in the United States about one percent of teenagers develop POTS.

“It’s a staggering number of kids,” she said. “I know for my own daughter it was difficult for her to attend school. She only could go for one or two periods. She missed all of the extracurricular activities, the band concerts, football games, all that stuff.”

Azarie’s condition is too severe for him to attend school this fall. Parenteau says she’s had to arrange for Azarie to do school work when his energy allows.

The family lives in Chitek Lake 185 km northwest of Prince Albert and has had to make several trips to the emergency room when Azarie’s symptoms become life-threatening.

Parenteau says there’s also been countless doctor appointments, CT scans, blood work appointments and physiotherapy appointments twice a month.

“Just mentally and emotionally it’s been huge on us. Just trying to get him to a doctor takes two hours to drive,” said Parenteau.

Friends of the family set up a GoFundMe to help pay for extra medical expenses and travel.

“Financially it’s been rough. You pay to get your kids healthy and skip out on other things that you can’t afford. Sometimes you have to skip paying a bill,” Parenteau said.

There are medications that can help people with POTS but unfortunately, there’s not a one size fits all treatment says Pederson.

“Right now there is no cure for POTS. That’s something we’re working towards and unfortunately with COVID we are welcoming way too many people into our chronic illnesses community as part of long COVID,” said Pederson.