Young Girl Shares Experience with Rare Disease

From HS

Millions of people in the Unites States are diagnosed with various disease each year, including children.

There is a disease though that’s rarely talked about, because well, it’s rare.

It’s called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep — otherwise known as PANDAS.

Doctors estimate this disease affects one in 200 children. There are many obstacles that come along with it — troubles with insurance coverage as well as common misdiagnoses that’s left families in the dark.

Clara McCloskey is sharing her experience with the disease in hopes to shine some light for other families going through a similar situation.

There’s something to know about Clara: She says she doesn’t like to be ordinary. She stays active, goes on daily walks and has tons of hobbies. She loves art, music and sports, but above all, she loves her family.

“I’d do anything for them,” said Clara.

And it’s clear they would also do anything for her.

“She’s awesome. She’s the best,” said Clara’s mom, Rohnda McCloskey.

Among all Clara’s hobbies, one sticks out. At the age of three, her mom took her to a ballet class. Once they arrived, Clara saw belly dancing, and the rest is history.

“It’s just one of my passions. I love the music,” said Clara.

Now, for eight years, she’s been driving to another town to hone her skills, performing and competing.

“It just takes all my troubles away,” said Clara.
And most of her troubles started when she turned 7 years old.

“She literally went to school on a Friday morning and came back and was making these movements,” said Rohnda, explaining tick-like gestures.

At first, doctors put her on tick medication and told her mom it would get worse before it got better and then sent her home.

Not soon after, it did get worse with no signs of getting better.

“She couldn’t hold a pencil to do her school work,” said Rohnda. “It would fly out of her hand. She couldn’t hold water to drink — it would splash all over her. If she held a fork to feed herself the food would go flying.”

“I would have given anything to stop them,” said Clara.

Rohnda is a nurse and knew something was off about the diagnosis. After posting videos online, someone messaged her and mentioned getting Clara checked for PANDAS disease.

So, they found a doctor in Cleveland and hoped he’d have answers.

“Had an opening, got her in, put her on antibiotics, and by that night, she was like 85% better,” said Rohnda.

After nine long months of not knowing, they finally had a diagnosis. With PANDAS only being identified since 1998, much is still to be learned about the disease.

In the United States, it’s estimated 1 in every 200 kids has obsessive compulsive disorder (OCD), and 1 in every 360 have been diagnosed with Tourette syndrome. Of those diagnosed the American Journal of Nursing believes up to 10% could actually have PANDAS disease and not OCD or Tourettes.

One of the biggest barriers of getting a correct diagnoses is effects of PANDAS can take on the identity of mental health issues — something Clara and her family know all too well.

“At the time in my brain, I just was thinking, I’m over it,” said Clara. “I want to stop. I want to stop my ticks. I don’t know how to stop them, I don’t know why I’m having them and I just don’t have any other answer. So, I just kind of gave up and was like, I’m done.”

Before she was diagnosed and treated, Clara, at the age of 7 along with many other kids dealing with PANDAS, started having suicidal thoughts.

“Do you remember what you said to me,” asked Rohnda.

“I remember walking into your room and you were sitting on your couch and I remember just blurting out – I don’t want to be in this world anymore,” said Clara. “You were crying I was crying. I said like, I want to kill myself.”

“You said you hate your life,” said Rohnda.

“Yeah, I said I hate my life,” said Clara.

Clara is now thriving. Her treatments help tremendously and she says her friends, family and love for dance played a big part of her, now, positive outlook.

She wants to remind kids they’re not alone, and she promises there is light at the end of the tunnel.

“If the one thing I could tell my past self is,” said Clara. “The one thing I could tell my past self is you don’t need to care what anyone else thinks and just need to pull through and you know you’re going to get to the point you want to be.”

There is much to be learned about PANDAS still. Clara considers herself one of the lucky ones getting her correct diagnosis in nine months. A lot of times it’s hard to get a diagnosis because PANDAS is some what new and presents itself in many different ways. There are treatments, but out of pocket costs are in the tens-of-thousands. This is one reason parents of children with PANDAS say it’s a controversial diagnosis. More insurance companies are acknowledging the disease and some local families have been working on a bill to ensure that families going through this are taken care of.