Watch above: Little known condition can change a child’s life
SASKATOON – Ten-year-old Callie Sookerokoff is an active and happy child today but returning to normalcy has been a long road.
The problem began one morning in November 2010.
That morning, she was fearful to go to school. Her clothing, particularly socks, felt painfully itchy. She began using the bathroom frequently during the day and up to 30 times before going to bed.
“I just always felt like I had to go, but I didn’t,” said Callie.
Once in bed, she couldn’t sleep.
“Ended up going to a psychiatrist and was diagnosed with anxiety but the whole time we just knew something wasn’t right. Like why would she change overnight,” said Lisa Sookerokoff, Callie’s mother.
The family continued seeking an answer that “made sense” – eventually coming across a condition abbreviated as PANDAS or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.
Callie had 11 of the 12 symptoms. Because the disorder is associated with strep throat, Callie was prescribed Amoxicillin.
“Within days we began to see improvement in her behaviors,” said Lisa.
For the past year, Callie takes Amoxicillin daily.
Dr. Alan Rosenberg is attempting to create a team in Saskatchewan for families faced with the disorder.
“There is considerable debate and controversy about the condition, mostly because we don’t still understand it,” said Rosenberg, pediatric professor.
Some doctors believe it’s a mental health issue while it’s also possible many children are misdiagnosed, due to its long list of symptoms. Because of this, the frequency of the disease in unknown.
“It’s a factor only in a small number of children, thought to occur because the genetics of the streptococcus bacteria is similar to the genetics of the individual affected child,” said Rosenberg.
“We want people to not go through the same steps we went because there was a lot of frustration,” said Jayson Sookerokoff, Callie’s father.
The Sookerokoof’s advise families to trust their instincts and say the sudden onset of symptoms is the distinguishing factor.
The family is planning to host an awareness conference in the spring.