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Living with PANDAS, a childhood tragedy

1 in 200 children are affected by Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections, also known as PANDAS.

Posted: Mar 25, 2019 1:05 PM
Updated: Mar 26, 2019 3:40 AM

1 in 200 children are affected by Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections, also known as PANDAS.

Harlin is one of those children who is currently battling the disorder. To most people he looks like a normal, healthy 9-year-old, but he acts more like a 4-year-old.

“He was six he got two strep infections back to back, they were about a couple months apart,” explains Meggan Bennett, Harlin’s mother, “after he got those strep infections, I noticed him starting to change. His personality changed. He became very obsessive, paranoid, he had anxiety, he started having a tick like a coughing and tick.”

According to PANDAS Network, a parent-created national support group, PANDAS occurs when strep triggers a misdirected immune response and results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.

“His pediatrician spent two weeks researching and calling anybody he could,” says Meggan. “He said 'I’m convinced that your son has PANDAS. We’re going to run a blood test it’s called ASO, it’s to check his blood for strep.' His strep levels in his blood were twice the normal level and so at that point we tried to start thinking about what we can do.”

There is no cure for PANDAS.

“Just kind of a game on what fits this kid,” explains Meggan. "Some kids get better right after the antibiotics, some kids don’t. There’s no actual cure the idea is to put them in once kind of called a remission and till they get into adulthood.”

It becomes an elimination game, what works and what doesn’t, and it gets expensive fast.

“A lot of kids they have to get what’s called an IVIG and it’s not usually covered by insurance and it’s extremely expensive, or a plasmapheresis which again is not covered for PANDAS so sometimes antibiotics work,” says Meggan, “and sometimes parents are taking out second mortgages to try to get their kids healthy again.”

Meggan has went from a full-time working mom to part-time so that she can be available for doctors’ visits and emergencies.

“At the end of last spring he was seeing a psychiatrist, a neurologist, his pediatrician, the natural-path up in Portland, he was seeing a clinical social worker, getting his blood drawn. He can have this enormous amount of doctors’ appointments. I had to cut my hours back because I have to be available,” explains Meggan.

The National Institute of Mental Health recognizes PANDAS but it is not recognized by everyone in the medical community.

“A lot of times PANDAS parents will be told ‘that’s not a real diagnosis, sorry,’” says Meggan. “For a parent it’s very defeating — even knowing what I know and the research I’ve done, you still feel like a tiny person in the room with whoever you’re talking to who says that’s not real.”

That’s why Meggan has organized a viewing of "Stolen Childhood" for this Saturday, March 30th at the Smullin Health Education Center.

“The documentary is about families who have kids who have PANDAS and some of the cases are really extreme,” says Meggan, “I just think people don’t know. You don’t know what you don’t know.”

The event is free to attend and open to the public, donations are encouraged. The showing will be from 12-3 p.m.

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