Sudden outbursts, tantrums, tics and bouts of OCD in children — and it seems to almost happen overnight.
The disorder is most commonly known as PANDAS — Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
Where PANDAS Starts and its Scary Symptoms
Strep throat is a common and painful infection that’s usually cured by antibiotics. But according to PANDAS Network, strep throat for 1 in 250 kids between the ages of 4 and 12 can trigger behavioral symptoms that are bizarre and frightening, even after it’s been treated.
“It’s basically a disease where a child gets sick with an infection and their immune system, instead of attacking just the germs, also mistakenly attacks their brain,” said Dr. Elizabeth Spaar, with Spectrum Family Practice.
Spaar has two sons who have been diagnosed with the disorder. She is a PANDAS expert with an integrative medicine practice in Grove City.
She’s made it her mission to help families get a correct diagnosis for the disorder.
“They feel almost like their child has been kidnapped and replaced with someone else,” Spaar said.
PANDAS can lead to sudden and violent outbursts, tics, tantrums, severe OCD, refusal to eat and anxiety. Parents describe the symptoms as “sudden and out-of-the-blue.”
Lisbon’s Clara McCloskey, now 9 years old, was diagnosed with PANDAS but the fight to get to a diagnosis wasn’t easy.
Her mother, Rohnda, remembers the day her life changed forever. It was a Friday night about two years ago and the family was sitting, watching a movie.
“She couldn’t sit still. She was making jerky head motions, weird movements with her mouth.”
Rohnda, who is a registered nurse, thought her then 7-year-old daughter was having a seizure. Little did she know, that night would set her family on a life-changing journey with PANDAS.
As a mom, Rohnda was desperately looking for answers.
“She was completely fine 12 hours ago and now she’s doing this,” she said.
She took Clara to the ER and was told to follow up with her pediatrician. Within two days, Clara’s tics were worse. Rohnda began taking videos, documenting the heartbreaking and unbelievable change in her daughter.
“I asked her several times, ‘Why? What makes you want to do these movements?’ And she just kept saying, ‘I feel like I have to get them out.'”
The Struggle to Find a Diagnosis
The back-and-forth between doctors and specialists, and trials of different medications went on for months.
“In the case of my own son who has PANDAS, we saw over 15 doctors until we finally got diagnosed,” Spaar said. “That’s not uncommon at all for them to have seen a variety of doctors and be given psychiatric diagnoses, and be told they’re kind of imagining things and that they just need to calm down and not worry about it.”
Clara would be diagnosed with Motor Tic Disorder. Symptoms would come and go. She developed small bouts of OCD when it came to clothes, along with separation anxiety.
“Nobody is helping her,” Rohnda said.
So she took to social media.
“I posted a video, ‘This is what my daughter is doing. Has anyone ever seen this?'”
Answers flooded her comments. One person suggested PANDAS and the research began.
“I don’t have anything to lose, here. I Googled PANDAS doctors in Ohio and found Dr. Jan Kriwinsky,” Rohnda said.
By Monday, she and Clara were making the hour and 15-minute drive to Beechwood. Clara was diagnosed with PANDAS that day.
“Back to Herself”
Once diagnosed, experts say the best treatment for acute episodes of PANDAS is antibiotics.
After taking the first dose of an antibiotic, Rohnda said she was almost back to herself again.
But a relapse and change in medication brought more darkness into this journey.
“I couldn’t believe that my daughter was saying things like, ‘I hate my life.’ She was crying. ‘I don’t care if I die,’ she said that.”
Years of misdiagnoses could have lifelong effects, but when caught early enough or with advanced treatments, symptoms have subsided within weeks.
It was then recommended that Clara begin IVIG treatments — an advanced treatment not covered by insurance.
“They take blood donors from thousands of patients and they basically remove the immune-fighting cells from it. It’s almost like infusing someone else’s immune system into you,” Spaar said.
These treatments can run upwards of $10,000.
Rohnda kept making appeals to her insurance company until one was finally approved. Clara received two rounds of IVIG in April of 2017.
“It was amazing. She was completely better and back to herself,” Rohnda said.
While kids may relapse, experts say the symptoms are far less violent when they’re treated.
Clara was tic-free for months until suffering a relapse. In February, she received another round of IVIG, easing her tics once again.
She still has small flare-ups.
“She clicks her teeth, occasionally jerk very mildly. Most people don’t notice it, but we do, as her family,” Rohnda said. “Personality-wise, she’s herself, she’s happy.”
Funny and sarcastic. Clara loves to dance with her mom and in competitions.
When the McCloskey family was on the road to finding a diagnosis for Clara, Rohnda was convinced she was going to have to homeschool her. Sitting at the kitchen table doing homework is one of those little things she takes more time to enjoy now.
“If you go to a doctor and they kind of just blow you off, don’t give up. Keep pursuing it because you know your child better than anyone,” Spaar said.
Between her two practices in Grove City and Verona — just outside of Pittsburgh — Spaar sees about 50 patients who have been diagnosed with PANDAS.
As for Clara, her message is a strong one.
“Your life is going to get easier along the way. Your life’s not going to stop because PANDAS can’t kill you,” she said.
PANDAS is a very complex disorder and this is just one family’s journey. Many others are the same and some are very different, depending on the child.