Strep misdiagnosis: clinical condition causes serious consequences in children

“My daughter went to sleep completely normal and woke up and was no longer herself,” said Alexis Rouse, a mother of children with PANDAS.

“She had OCD with intrusive thoughts, then several days later she started developing more symptoms like not wanting to eat and ADHD nightmares and headaches and stomach aches and anxiety,” said Rouse.

A temporary disorder overnight; it’s something Lake County mom Alexis Rouse and hundreds of other parents never saw coming. What if we told you your child could go to sleep one night and wake up the next morning an entirely different person suffering from what seems to be a psychotic break?! Rouse says she’s dealt with some of these issues in both of her children.

“I knew something was not right and that this was not normal,” said Rouse.

Her daughter Baylee was diagnosed at the age of 8 in 2017, and her son Dax just 3 years old earlier this year.

Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep infections, or PANDAS, occurs when a strep infection triggers a misdirected immune response and produces antibodies that attack healthy tissues, particularly in the brain, causing these outward neurological symptoms.

“Tics, obsessive compulsive disorder, and ADD,” said Lynnette Valentijn, a South Bend Clinic Pediatrician.

More symptoms include personality changes, a decline in math and handwriting abilities and sensory sensitivities. Despite these scary signs, Dr. Lynnette Valentijn says there’s a reluctancy to diagnose patients.

“There’s certainly a lot of controversy about this, none of it’s been really proven,” said Dr. Valentijn.

PANDAS is a clinical diagnosis which means there are no lab tests to prove it. Instead, doctors are currently using a list of criteria to diagnose children, but not all physicians are on board.

“I went to her pediatrician that she has been with her whole entire life and I was not received well when I asked about PANDAS. So I then had to travel 5 hours to Columbus, Ohio to see another integrated pediatrician who had seen us and I just remember feeling very nervous,” said Rouse.

She says dealing with her daughter’s illness was one of the most intense moments she’s experienced.

“You have all these thoughts going through your head and you’re not sure if you’re in the right place,” said Rouse.

And then everything took a turn…

“He ran over 35 tests on my child, many of which didn’t come back as a healthy child,” said Rouse.

Based on apparent symptoms, Alexis’ daughter Baylee was diagnosed with PANDAS. Immediately after, she was prescribed a preventative dose of antibiotics to help treat the strep infection, which she still takes today to prevent any abnormal symptom relapses.

Wendy Nawara had an almost identical experience with her children.

But after finally getting help Nawara saw the need for awareness about PANDAS and started an awareness group in 2011.

“We need to make sure that these children get the treatments because the sooner you treat, the better the prognosis is. These kids WILL get better,” said Wendy Nawara, President/Executive Director of PANDAS/PANS Advocacy & Support.

With the help of other moms across the country suffering financially in search of a diagnosis, Lawmakers became part of the picture.

“The legislation that passed in Illinois last year is the first of its kind in the country and it requires insurers to provide insurance coverage for the treatments of PANDAS,” said Nawara.

And states like Indiana and Michigan are following suit.

“There are now 35 other states that are working towards legislation like that, ranging from things a simple as an awareness day, as well as advisory councils in their states and then this legislation for insurance coverage… we’re going to do it,” said Nawara.

Research and treatment for PANDAS is scarce. At the moment, researchers are evaluating guidelines for the diagnosis and treatment.

Meanwhile, people right here in Michiana are trying to spread the word too. As a matter of fact three Culver Military Academy seniors are organizing a bike ride Saturday to raise awareness PANDAS. The bike ride around Lake Maxinkuckee will be at 10:00 a.m. May 19th beginning at Culver Academies. This is not a fundraiser but rather an opportunity to make more people aware of this disorder which wasn’t described in medical journals until 1990. While Culver Academies students cannot ride, the event is open to the public. People will be required to sign a standard waiver to participate. For more information, click here.