PATIENT STORIES
At age 11, Parker suddenly developed tics, mood swings and seizure-like episodes (Part 2).
Parker’s Story (Part 2)
In 4th grade, Parker suddenly began having tics, mood swings, outbursts of rage and seizures. After months of searching for an answer, he was diagnosed with PANDAS.
WATCH VIDEO: PARKER’S STORY
Spring came late to Minnesota this year. The land of 10,000 lakes still frozen, long past usual but in the pleasant town of Prior Lake, April marked a year since the Barnes family's lives changed forever.
Reporter:
Before all this hit what was your family life like?
Parents:
4 kids, 2 dogs, lots of love, lots of laughs, lots of giggles.
Kids talking to each other:
You used to do truth or dare since you were 4 years old. We never did that.
Reporter:
11-year-old Parker, the oldest [child].
Parker:
My nickname that my mom and dad call me is “lead dog.”
Reporter:
A rambunctious, outgoing boy until midway through 4th grade. Parker started acting differently - odd tics, strange moodiness. But then, something much worse. It's hard to watch.
Parents:
You're in control Parker. Look at mom.
Reporter:
Harder still when you consider that Natalie and Brian were watching their son suffer with seizures like these for months. Heart-wrenching and without warning.
Mom:
[Parker having seizure] It’s okay Parker, we got you. We right here with you.
Dad:
I would liken it mostly to an abduction. Something came in the window and stole our child and left behind this shell. Our kid is gone.
Parker:
I was the first one to see it. But Parker's brother Stetson witnessed one of the worst episodes one day while heading up the stairs to the bathroom. He ran into Parker brandishing a kitchen knife.
Parents:
We ran up to the bathroom and he was standing there with a knife in his hand. I just grabbed the knife and I'm just hugging him.
Reporter:
That day with the knife, did you want to hurt yourself?
Parker:
I don’t really know.
Reporter:
It's as if you can't even recognize your own child and yet no doctor is able to give you answers?
Parents:
Their recommendation was - he needs to be evaluated by a psychiatrist.
Reporter:
It's a psychiatric condition?
Parents:
Yeah.
Reporter:
The barns were dumbstruck to be checking their child into a psychiatric hospital.
Parker:
That was a nightmare. It was like a prison for children because all the children there didn't want to see their families because they were all angry and mean or something.
Reporter:
But while Parker was being evaluated, suddenly a curious coincidence. A doctor was struck when she learned that when Parker's symptoms first began all those months ago he had just been diagnosed with something else - strep throat. It was a Eureka moment.
Mom:
She said he might have something called PANDAS. And we're like PANDAS?
Reporter:
Parents get the answer PANDAS and their reaction is “What PANDAS?” If you’ve never heard of PANDAS, you're hardly alone. In fact, no one had heard of it before this woman - Dr. Susan Swedo of the National Institute of Mental Health first identified it 20 years ago.
Dr. Swedo:
I study children and try and understand what's wrong with them and how to help them.
Reporter:
While it conjures up images of the cute and cuddly bears, PANDAS is actually an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep infections. What is PANDAS?
Dr. Swedo:
In its simplest form - the wrong strep in the wrong kid impacts the brain and gives rise to behavioral symptoms.
Reporter:
How? Swedo says normally when children get strep their immune system creates antibodies to fight the infection but with certain kids the immune system malfunctions. Those antibodies start attacking healthy cells. And even worse, they sneak across what's called the “blood-brain barrier” that is designed to protect the brain.
Dr. Swedo:
It’s designed to protect the brain. But we now know that the blood-brain barrier can become leaky.
Reporter:
It's as if the antibodies are attacking the brain.
Dr. Swedo:
In a way, yes.
Reporter:
And once the brain is invaded, Swedo says, that's when children can very rapidly exhibit a wide range of psychiatric and neurological problems. Some as severe as the kind Parker had.
Dr. Swedo:
So, traditional onset OCD is gradual, comes over a period of days or weeks. PANDAS OCD comes on overnight. A medical lightening strike.
Alexia’s Parents:
The only thing that kept questioning is, “Why did this suddenly come on? Wouldn't I have seen signs? And what about that strep? [Dr. Swedo’s] research is striving to figure it out and it really paid off.
Reporter:
Eventually, a neuropsychologist made a connection between the strep and immediate onset of symptoms that made sense to the Baier family.
Parents:
She asked, Have you ever heard of PANDAS?
Reporter:
Is it fair to say you were relieved?
Parents:
Definitely relieved to have some sort of diagnosis that made sense.
Parker’s Parents:
I’m thinking great, PANDAS. What do you do? Whatever it is, great, it will be gone and we’ll get our kid back.
LEARN MORE: AUTOIMMUNE NEUROPSYCHIATRIC DISORDERS
PANS/PANDAS Overview
PANDAS & PANS Patient Stories
