PATIENT STORIES

Parker and Alexia – Diagnosed with PANDAS

Kids suffer from debilitating neurologic and psychiatric symptoms following a strep throat infection (Part 1).

Parker’s Story (Part 1)

12-year-old Parker’s brain is under attack. Mysterious outbursts that look like
mental illness.

WATCH VIDEO: PARKER’S STORY

Source: ABC News

Reporter:
12-year-old Parker's brain is under attack. Mysterious outbursts that look like mental illness. His parents desperate for answers, recording these horrifying moments, hoping that someone might know what's wrong and how to stop it. These fits and attacks all suddenly starting after a bout of strep throat.

Dr. Swedo:
We've known for a very long time the viruses can't trigger mental illness.

Reporter:
Prior Lake, Minnesota, middle-class middle-America. Parker Barnes is the oldest child in a house full of activity.

Parents:
4 kids, 2 dogs, we have a small business and we both work besides that. We have a hectic life.

Reporter:
Parker’s parents, Natalie and Brian, say their son is the kind of kid every parent dreams of having.

Parents:
Parker is affable, relaxed. He's got a dry sense of humor. He's very positive.

Parker:
My nickname that my mom and dad call me is Lee Doug.

Reporter:
But overnight they say he morphed into something else. A year and a half ago when he was 10, Parker got strep throat. Within days, strange symptoms appeared.

Parents:
He had a small throat tic. It just seemed like he never quit clearing his throat. It was minor.

Reporter:
Parker took antibiotics and everything cleared up but over the next 3 months, 3 rounds of strep. Each time, mysterious behaviors appeared and got worse. When he became socially anxious and shut himself off what was your reaction?

Parents:
This is just strange.

Reporter:
That paralyzing anxiety led to obsessive compulsive behavior. Their normally low key boy suddenly tortured by inexplicable rage. The first urgent cry for help came when Parker sent his dad a text message.

Dad:
“Dad I need you to come home right now.” And I ran through the door, he's bawling uncontrollably and I'm like what is going on?  He’s like, “I don't know. I don't know. I can't stop crying. I am horribly sad and I don't know why.

Mom:
I said, “You know, he's been kind of getting like this when he has strep.”

Reporter:
Their doctors recommend seeing a psychologist. Little did anyone know the real crisis was still ahead.  You were about to be blind sided?

Parents:
Oh yeah, blindsided like you never imagined.

Reporter:
One morning Parker and his younger brother Stetson were getting ready before school. I said, “Go brush your teeth. The bus is going to be here in seven minutes. Let's get you ready and out the door.” And he starts screaming. I said, “Oh my god Parker what are you doing?” He’s got a knife.

Brother:
I was the first one to see it. He had a knife. He's about literally to stab himself. He was saying, “I’m useless. I’m useless.”

Mom:
I just grabbed the knife out and I'm just hugging him like, “Honey what's up, what is up with you? This doesn't make sense to me.” He's said, “I just didn't want me to hurt anybody with the strep anymore and he said that and I still didn’t put this together. I just kept saying, “It’s okay, it’s just strep throat, it’s no big deal.”

Reporter:
When you were on your way to school and you picked up a knife, do you remember that?

Parker:
Yeah, I kind of don't remember and I don't really like to think about it.

Reporter:
Panicked, Natalie and Brian called 911. Just hours later, they had to do the unthinkable, admit their 10-year-old son to a psychiatric hospital.

Parents:
We dropped him off and we don't get to stay. We had to leave.

Dr. Swedo:
I just study children and try to understand what's wrong with them and how to help them.

Reporter:
Dr. Sue Swedo works at the National Institute of Mental Health. She believes common childhood infections, like strep throat, can trigger sudden and drastic changes in some children like Parker.

Dr. Swedo:
The wrong strep, in the wrong kid, results in the wrong kind of immune response that impacts the brain and gives rise to behavioral symptoms.

Reporter:
400 miles away just outside Chicago, another family in crisis - Alexia Baire got strep throat for the first time when she was 4 years old. But just days after treatment, her mom, Vanessa, says she changed from a well-behaved, happy child to this.

Child:
Shut up, shut up, shut up!

Reporter:
How long until you saw a change?

Mom:
It was less than 2 days later. It was defiance and some OCD. She just all of a sudden seemed angry.

Reporter:
Alexia was even kicked out of daycare after trashing her classroom. Even she knows something is wrong.

Mom:
She would cry and say “Mommy why can't I be good. I just want to be good.” And, that broke my heart.

Reporter:When you're in the middle of a flare-up, can you sense that something is happening?

Child:
No, not really. I just go and try to hurt people.

Reporter:
The family came to a breaking point when Alexia attacked her own mother.

Mom:
[Driving car] Right up here, I pulled over and I turned to her and as I picked my head up, she was stabbing me in the eye with my mascara wand. All I can see is black and I wasn't sure if she blinded me in the eye or is it the mascara. But it was violent enough and it was intentional.

Reporter:
You had to put your 4-year-old in a psych ward?

Mom:
The hardest 9 days of my life.

Reporter:
Vanessa says doctors sent her young daughter home with a number of psychiatric drugs used to treat schizophrenia and bipolar disorder. Did the drugs work?

Mom:
No, they made her like a shell of her person and then she was still having these bouts of rage and aggression.

Reporter:
It took months before a doctor finally connected Alexia's behavior to strep.

Mom:
And she said every single one of the symptoms that you're describing is a symptom of PANDAS.

Reporter:
If you haven't heard of PANDAS you're not alone. Dr. Susan Swedo first identified it more than two decades ago. It stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep infections.

Dr. Swedo:
It probably affects somewhere between 1 and 200 and 1 and 500 children every year.

Reporter:
1 in 200 is a huge number of children potentially.

Dr. Swedo:
It is.

Reporter:
Those numbers account for a whole spectrum of cases, ranging from minor to severe, like Alexia and it turns out, Parker too.

Parents:
Good, great, PANDAS.  Whatever it is, we’ll [treat it] and it will be gone.

Reporter:
But treatment wasn’t that easy. Next, inside the cross-country journey to get Parker help.

View Alexia's Story
View Grace's Story
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  • Test Order Process
    The Cunningham Panel™ – Antibody testing that helps determine whether an autoimmune response may be triggering neurologic and/or psychiatric symptoms.

B. Robert Mozayeni, MD

Medical and Clinical Advisor

B. Robert Mozayeni MD

Dr. B. Robert Mozayeni was trained in Internal Medicine and Rheumatology at Yale and at NIH. He has had pre- and post-doctoral Fellowships in Molecular Biophysics and Biochemistry at Yale, and also at NIH where he was a Howard Hughes Research Scholar at LMB/DCBD/NCI and later, Senior Staff Fellow at LMMB/NHLBI/NIH. Editorial board of Infectious Diseases – Surveillance, Prevention and Treatment. Past President of the International Lyme and Associated Diseases Society (ILADS).

He is an expert in Translational Medicine, the science and art of advancing medical science safely and efficiently. He is a Fellow of the non-profit Think Lead Innovate Foundation and is a co-founder of the Foundation for the Study of Inflammatory Diseases. He is a Founder of the Foundation for the Study of Inflammatory Diseases to crowd-source medical solutions for complex conditions using existing knowledge, diagnostic methods, and therapies to meet patient needs immediately. He is the Chief Medical Officer of Galaxy Diagnostics, LLC. He is a Board member of the Human-Kind Alliance. Dr. Mozayeni has held admitting privileges (since 1994) on the clinical staff of Suburban Hospital, a member of Johns Hopkins Medicine and an affiliate of the National Institutes of Health Clinical Center.

Safedin Sajo Beqaj, PhD, HCLD, CC (ABB)

Moleculera Labs, Clinical Laboratory Advisor
Medical Database, Inc., President and CEO

Sajo Baqaj, PhD

Dr. Sajo Beqaj is board certified in molecular pathology and genetics and licensed as a Bioanalyst and High Complexity Laboratory Director. He has been practicing as a laboratory director since 2005.

Dr. Beqaj served as a technical director and was part of the initial management team for several well-known laboratories in the clinical lab industry including PathGroup, Nashville, TN; DCL Medical Laboratories, Indianapolis, IN, and Pathology, Inc, Torrance, CA. He is currently serving as off-side CLIA laboratory director for BioCorp Clinical Laboratory, Whittier, CA and Health360 Labs, Garden Grove, CA.

Dr. Beqaj received his Ph.D. in Pathology from Wayne State University Medical School, Detroit, Michigan. He performed his post-doctoral fellowship at Abbott Laboratories from 2001-2003 and with Children’s Hospital and Northwestern University from 2003-2005.

Dr. Beqaj has taught in several academic institutions and has published numerous medical textbook chapters and journal articles. He has served as a principal investigator in clinical trials for several well-known pharmaceutical and diagnostic companies such as Roche HPV Athena, Merck HPV vaccine, BD vaginitis panel, Roche (Vantana) CINtec® Histology clinical trials, and has presented various scientific clinical abstracts and presentations.

He is a member of several medical and scientific associations including the Association of Molecular Pathology, American Association of Clinical Chemistry and the Pan Am Society for Clinical Virology. He has served on a number of clinical laboratory regulatory and scientific committees, and has assisted several laboratories and physicians as a Clinical Laboratory Consultant.

Rodney Cotton, MBA

Moleculera Labs Board Member

Rodney Cotton, MBA

Rodney Cotton, MBA is an entrepreneurial thought leader in the pharmaceutical/biotech industry who is known for his holistic perspective, bias for action in the face of challenges, and commitment to agile processes.

Rod is an independent director for Orchard Software, a private equity-backed health technology company owned by Francisco Partners; an advisory board member to Flo2 Ventures, a venture capital-backed healthcare and health equity accelerator; and a member of the board of directors and three board committees (Audit, Compliance & Finance; Governance & Equity; and Quality of Care) for Community Health Network.

He built a successful career at Roche spanning more than two decades and culminating in the role of SVP, Head of Strategy & Transformation, and Chief of Staff to the CEO for Roche Diagnostics, the North American headquarters of the world’s largest ($17B) diagnostics company.

While at Roche, Rod led key enterprise initiatives, such as milestone corporate communications, health equity coalitions, the US/Roche Group audit, and global/US acquisition integrations. With 40+ years of experience, he drove the financial turnaround and cultural transformation of four global healthcare companies, led teams of up to 280 total reports, managed P&L of more than $1 billion, and served as a key member of the senior leadership team executing the most significant restructuring of the company in two decades.

In the face of the COVID-19 pandemic, Rod and his team at Roche accelerated six ground breaking products in 11 months, including the first launch of the market’s most accurate and in demand molecular diagnostic test. He also solved extraordinary challenges of product scarcity, supply chain, product allocation, and logistics to achieve accelerated global sourcing and self manufacturing in line with testing guidelines.

A frequent public speaker on health equity and other topics, Rod was named one of the Most Influential Black Executives in Corporate America by Savoy Magazine and one of the Top Blacks in Healthcare by BlackDoctor.org. He also received The Sagamore of the Wabash Award, one of the highest Indiana State honors, bestowed by Indiana Governor Eric J. Holcomb.

Rod holds an M.B.A. from California State University, Dominguez Hills, an M.S. in Strategic Management from the University of Southern California, and a B.A. in Biological Sciences & Technology from the University of California at Santa Barbara.