St. Albert family hopes to raise awareness about strep throat disorder PANDAS
Editor’s note: A previous version of this story stated strep throat is a virus when it is actually bacteria.
Eden Hebb, 11, was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS) in March.
It’s caused by the body’s immune reaction to strep. Symptoms can include ADHD as well as unexplained rages and tics.
According to the International OCD Foundation, kids between three and puberty are most at risk. A diagnosis can happen after a child experiences obsessive-compulsive disorder for the first time or when symptoms suddenly become much worse.
Eden’s most common symptom is an uncontrollable tic and vocalization.
“I had it at the beginning of school [last year]. I had little [tics] but it wasn’t technically a tic and then it came back,” Eden said Sunday. “It was really hard.”
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“It was nice to know what it was but it was still happening a lot. It sometimes hurts.”
“It came on so [quickly] and so fast, it’s scary because it does take time to do the test, time to get the results back properly and get into the right doctors,” Eden’s dad, Greg Hebb, said.
Eden is on medicine, but Greg said it’s unclear when her symptoms will be gone.
“You do see peaks and valleys with [tics]. It will spike sometimes when she comes off a different medication but it’s not an immediate fix,” Greg said.
The family held a BBQ at a Save-On-Foods in St. Albert to raise awareness about PANDAS on Sunday. About $500 was raised to go towards research.
Sometimes when Eden is out in public and she makes noises, people stare at her. Some even make comments under their breath.
“I think it’s kind of silly because it’s a daily occurrence for me, so I don’t really know why they’re looking at me,” Eden said.
“[I want people to] be patient, if they were a little more understanding.”
“If [people] see somebody with the tic and vocalization… be a little more understanding, approach it a little more cautiously and ask questions,” Greg said.
Greg said his daughter has received a lot of community support and her friends at school haven’t treated her any differently. Still, he hopes the medicine will soon work.
“For Eden, you hope that she is treated as normal at school as much as possible and you hope that it does get to a point where it’s manageable and that she grows out of it,” Greg said.
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