For one Greater Sudbury family, a simple case of strep throat back in 2012 has turned into an ongoing ordeal. What is usually simply a sore throat has become, for the Desabrais family, a years-long struggle to get their 17-year-old son the help he needs.
Cole Desabrais, the youngest of two sons to Ken and his wife, Brenda, lives with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal (PANDAS) infections. While the acronym, PANDAS, may make it sound cute, it is anything but, said Ken.
PANDAS is both a neurological and psychiatric condition in which the symptoms, including psychological symptoms, are caused by or worsened (if pre-existing) by a streptococcal infection, such as strep throat.
It is a subset of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), described by the U.S. National Institutes of Health (NIH) as "a condition defined by sudden onset of obsessive-compulsive symptoms and/or severe eating restrictions, along with at least two other cognitive, behavioral, or neurological symptoms. Examples of other symptoms include anxiety, depression, tics, personality changes, decline in school performance, and sensory sensitivities."
It's very rare, affecting an estimated one in 3,000 pediatric throat cultures.
The NIH reports that in more than 80 per cent of PANS cases, there is evidence of an abnormally strong autoimmune or inflammatory response in the brain after an infection.
The way Cole's father Ken understands it, the antibodies the body manufactures to fight the infection find their way into the basal ganglia of the brain. Those antibodies are seen by immune system itself as foreign particles and it attempts to remove them. In the process, the brain becomes inflamed, causing a host of neuropsychological symptoms and deficits.
The first episode happened in August 2012.
“In 2012, in August, Cole got what we call about 97 per cent of everything over the course of one weekend,” Ken said.
This sudden onset, with symptoms appearing abruptly and dramatically over a period of one or two days, is typical of PANDAS. Extreme OCD, oppositional defiance disorder, a sensory processing disorder, anxiety and rage, and fight-and-flight activation — symptoms the Desabrais family has had to manage every day since, Ken said.
His symptoms can be so extreme, there have been many instances where Ken and his eldest son have had to hold Cole down until the compulsion was over or he was completely exhausted. Repetition and compulsions are a big part of Cole getting stuck for hours in an anxiety loop that quickly turns into a rage, said Ken.
Ken recorded an episode where Cole was demanding to know what his mother had said when she walked into the room where he was. She couldn't remember what she had said, but it was something as simple as wondering if Cole's brother was playing video games. Cole became so compulsively fixated on what his mother said his demands turned into incessant screaming until his mother was reduced to tears.
“It's like an itch,” said Ken. “When he got what he wanted, he was able to move on.”
That's the tip of the iceberg. It's a complicated story, said Ken, and it has cost his family much, both in terms of finances and their emotional well-being. But, “failure is not an option” in finding help for their son.
Cole's symptoms are so severe, both Ken and Brenda have had to stop working. Their lives have been turned upside down in order to parent their son.
“I've been off work for a year now, and my wife for a year and a couple months,” Ken said.
Ken said the steps they are taking to help their son would be much more affordable if they were able to maintain their employment throughout, but the reality is they can't. They are both on disability, they've had to sell their house and now rent a home. Their finances are stressed to the breaking point.
“Our entire quality of life is about trying to make our son better, and still spend time with our older son,” Ken said.
Ken and his wife take Cole to a Chatham clinic for treatment, the only place they could find that treats the syndrome. He's had two treatments already, with a third already planned. During his treatment, Cole is injected with antibodies over several days, in an effort to boost his immune system. Each consecutive treatment is meant to build upon the previous one.
While Cole is in hospital, Ken and Brenda are staying in a hotel for three or four nights. Tack on the cost of food and gas, and it quickly adds up. Ken said each trip is about $800, and while he has no way of knowing how many treatments it will take, he does know he's already seen a big difference in his son.
Having already exhausted any funding avenues, and going deep into debt in order to help their son get better, they are turning to the community to ask for help. They have set up a GoFundMe account, with the goal of raising $10,500.
“If I could exist on a disability payments from the beginning of the month to the end of the month, I wouldn't be bothering people for extra help,” Ken said.
If you look at their GoFundMe page, you'll notice they've managed to raise more than $4,500 to date, but the donations have stalled, said Ken. The majority of those donations have come from family and friends.
Exacerbating the situation is the fact most people don't understand what the family is going though, said Ken. It's really something you couldn't even believe unless you saw it with your own eyes.
“I just think people have a hard time believing it,” Ken said. “When you say cancer or somebody's house burns down, those are all real tangible things that everyone knows about. But strangers just don't seem to grasp the severity of what our fight is.”
Even if Cole gets better, Ken knows his family isn't out of the woods yet. The goal is to get Cole back to a point where he can go to school and function in a social setting.
“We need to get Cole to a point where he can at least manage through a day of school without being completely overwhelmed, and then my wife and I can go back to work and settle down our debt,” Ken said.
Besides the GoFundMe, the family is hosting a fundraising pool tournament Nov. 22 at Rhythm 'n' Cues, 1855 Lasalle Boulevard. Doors open at 6:30 p.m. Tickets available at the door. For more info, call Ken at 705-677-5719 or Shannon at 705-562-0429.
