LIZZIE is in The Citizen Today!
AUBURN | It started with a sore throat.
It was July, and Lizzie O'Hara was suffering from what appeared to be a normal case of strep. A doctor prescribed her a round of antibiotics, and Lizzie's symptoms subsided.
For the next two months, the bubbly 8-year-old Auburn girl continued doing the activities she loved best: playing soccer, making jewelry, singing and "” come September "” going to school.
But late in October, that all changed.
Beth O'Hara, Lizzie's mother, said her daughter started showcasing a range of psychological symptoms on Tuesday, Oct. 23. Without warning, Lizzie was suddenly incredibly anxious, her mind plagued by an endless parade of terrible, unstoppable thoughts.
After watching her previously outgoing daughter suffer two days of inexplicable mood swings, separation anxiety and an inability to concentrate, O'Hara said she knew something was wrong.
"It was a whirlwind," she said. "It was like a tornado went through her."
O'Hara took Lizzie to her pediatrician, who immediately diagnosed what sparked Lizzie's sudden onset of psychiatric symptoms: pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, better known as PANDAS.
According to the National Institute of Mental Health, PANDAS is an autoimmune disorder where children suddenly suffer from obsessive-compulsive disorder and/or tic disorders following strep infections like strep throat.
The institute states that PANDAS comes after an untreated strep infection causes the immune system to release antibodies that attack the child's brain. The basal ganglia "” an area of the brain that controls movement and motor skills "” is particularly targeted, leading to OCD, tics and a large list of other neuropsychiatric symptoms.
O'Hara, a registered nurse, said she and many of her fellow colleagues at Auburn Community Hospital had never come across PANDAS.
"At first, I didn't even know about it," she said. "Nobody I talked to had heard of that."
Although a strep infection and psychiatric disorders seemed quite unrelated, O'Hara said the research she conducted after receiving Lizzie's diagnosis "” particularly reading about other parents' PANDAS stories "” resonated perfectly with her daughter's experience.
"They go from being fine to this whirlwind of symptoms," O'Hara explained of children afflicted by PANDAS.
According to the NIMH's website, children suffering from the autoimmune disorder often experience tics, irritability, an inability to concentrate, developmental regression and trouble sleeping, in addition to OCD.
When asked to describe what PANDAS is like, Lizzie repeatedly uses one word: chaos.
"I've been going through a lot," the third-grader said. "I can't control my thoughts."
Lizzie said she doesn't like to go to school anymore, explaining that she feels like everyone now treats her differently.
"It kind of hurts my feelings, because I have sensitive feelings," she said. "Nobody understands. I never feel comfortable anywhere."
Beth O'Hara said simply getting Lizzie to attend Herman Avenue Elementary School has been a struggle. She said Lizzie now struggles academically "” something new for the outgoing, bright girl.
"She's always liked school," the mother of two said. "She's never missed school."
Bob O'Hara, Lizzie's father, said his daughter used to be happy to sit down with her family for meals, and usually completed chores without complaint.
Now, he said, his daughter "freaks out" when it's time for her to go to bed, not wanting to be alone in her room. He said she can't sit still at the dinner table, and constantly flips around in her chair.
"It's like a totally different child," Bob said. "It's like I'm living with an 18-year-old rebel child."
Beth agreed with her husband, smiling sadly.
"This kind of behavior," she said, "is not how my 8-year-old child used to act."
Although PANDAS isn't a well-known disorder, scientists have discovered multiple ways to treat the autoimmune condition.
According to the institute, doctors usually attempt to treat PANDAS by prescribing the child antibiotics to eradicate the underlying strep infection. And in many cases, this line of treatment stops the child's neuropsychiatric symptoms.
In Lizzie's case, antibiotics have not worked. So, the O'Haras' next option is to try one of two immune-based therapies: either plasmapheresis or intravenous immunoglobulin. Plasmapheresis entails the removal, treatment and return of blood plasma from a patient's blood circulation, while IVIG is a type of therapy where patients are given a blood product intravenously.
This week, the O'Haras are set to travel to Washington, D.C., where Lizzie will see a pediatric neurologist and receive either IVIG or plasmapheresis.
Beth said no doctors in New York treat PANDAS, forcing her family to travel to the country's capital. And although the treatments are far from experimental, she said, insurance does not cover the treatments for children.
That means the at-least-$20,000 treatment will have to come out of the family's pockets.
Luckily, the O'Haras have good friends.
Beth O'Hara said both ACH and Nucor Steel, her husband's employer, have been more than understanding about what Lizzie is going through. She said some of her fellow nurses have donated hours to allow her to be with her daughter, and workers at both Nucor and ACH have organized a benefit to help raise money to cover the expensive PANDAS treatment.
"We're very thankful for our community," O'Hara said, "For both of our employers "” Auburn Community Hospital and our Nucor family."
In the meantime, she said her family will cross their fingers in hopes that the expensive treatment works, that Lizzie can say goodbye to chaos.
Seated on a couch in her Auburn home's living room, Beth O'Hara pulled her dog onto her lap and watched her daughter navigate her iPod.
When she looks at Lizzie, O'Hara sees her daughter as she is without PANDAS: a Girl Scout who loves singing in public and always wears a bright flower in her hair.
"Lizzie is very outgoing, very confident, very energetic," O'Hara said. "And its changed things for her. This is pretty life-altering for her."
O'Hara said she hopes the treatments stamp out Lizzie's OCD and allow her young daughter to live her life unimpeded by torturous thoughts and crippling anxiety.
"That's the goal of this treatment: to get her back to her baseline, to make her more comfortable," O'Hara said. "It's like a puzzle that the doctors are still putting together."
At first, O'Hara said she wasn't sure she wanted to make her family's story public. But when she realized how unknown PANDAS is, she said she knew how important it was to speak.
"We couldn't even wrap our mind around it. That's when we felt that we wanted to let people know about it," she said. "If we can make people aware this and doctors aware of this, then children can get treated."
As for Lizzie, her wish is simple.
"I hope," she said, speaking quietly, "that my life will get better."
PLEASE HELP THIS LITTLE GIRL! EVERY DOLLAR HELPS!
I HAVE POSTERS AND BENEFIT TICKETS IF ANYONE NEEDS THEM- PLEASE CONTACT ME :)