Local Mother Advocates For Families Struggling With PANDASOctober 12, 2017 9:51am
A Tilbury mother, whose two sons were diagnosed with PANDAS, has been connecting with local families in need of support.
PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is a disorder that is described as a sudden onset or worsening of Obsessive Compulsive Disorder (OCD) symptoms in children or adolescents. According to PANDAS Ontario, the disorder is triggered by strep throat and affects roughly one in every 200 people, yet very little is known about the condition.
Jennifer Ducharme says her experience with the disorder began when her eldest son Nathan June woke up with a stutter one morning at the age of two and a half. Ducharme says, eventually, he couldn’t make noise at all.
She says she visited several doctors and took him to speech therapy, which all led to more confusion. Nathan even needed an MRI to rule out a brain tumor. Ducharme says he was experiencing severe anxiety, personality changes, dilated pupils, and vomiting.
At a similar age, Ducharme’s youngest son Mitchell June started experiencing the same symptoms — but much more obvious and prevalent this time. Ducharme says he has severe OCD and separation anxiety.
“He was usually a happy-go-lucky, easy going, rambunctious little boy, but suddenly he thought he was too fat to wear anything in his drawer. He had his entire dresser emptied on the floor, and was laying in the fetal position, bawling his eyes out…I was scared out of my mind,” says Ducharme.
She recalls him even tried jumping out of her moving vehicle, kicking and screaming, because he was so terrified to go to school.
Josh Ducharme, who is Jennifer’s husband and the boys’ step father, came to the realization that the boys may have PANDAS after watching a television program.
“All of sudden, this episode called the ‘Strep Connection’ came on W5. It actually included Dr. Edwards from Chatham. It was discussing how strep can trigger all these symptoms and how it’s called PANDAS. He was immediately on the phone to me saying ‘You have to watch this!'” says Jennifer.
After several years of no answers, Nathan and Mitchell were finally diagnosed by Dr. Wendy Edwards in Chatham, who is the only doctor in Ontario specializing in PANDAS.
It was then that Ducharme began connecting with other families in the area struggling with the disorder.
“I was online, as most PANDAS parents are, desperately searching for answers and desperately seeking help. I happened to come across a PANDAS support group on Facebook. As soon as I joined that support group, it was like a little taste of heaven. [I was] so scared, alone, confused, and overwhelmed, then all of a sudden, [I] had all these people who were in the same boat,” explains Ducharme.
Ducharme was also asked by PANDAS Ontario to create a slideshow that has been viewed over 4,000 times on YouTube.
“Once that slideshow kind of made some headway and it was being shared around Facebook, I was getting messages several times a day from people I had never heard of or seen on the support group,” she says.
It is now Ducharme’s mission to raise awareness about this little-known disorder. She says her biggest goal is to encourage doctors to look at the root cause, rather than treating the symptoms with countless medications.
“Instead of going that route, my hope is that their first instinct will be to look for underlying infections,” says Ducharme.
Ducharme says she has also written an open letter to sons, which can be viewed on YouTube.