Oct 8, 2014 7:44 PM
GOFFSTOWN - There's a pediatric autoimmune disorder that's tied to a very common childhood illness. It's called P.A.N.D.A.S.
Some doctors call it controversial because there's no test for it, but for one Goffstown family it's all too real.
Seven years ago Robin and Adam McCune welcomed their son Isak into the world. He was a beautiful and smart little boy. The light of their world. But at age three something went drastically wrong overnight.
Isak's mother Robin McCune said, "I've had people say to me 'Oh, everybody has a child that misbehaves.' It wasn't about him misbehaving. It was about him, you could see it all over his face, feeling tortured."
Isak was experiencing a type of sensory overload.
Robin said, "He'd have these big meltdowns at the grocery store and we didn't really know why. It wasn't until later on that we realized it was these sounds that were bothering him. A clock ticking. Something that you and I would not even notice."
And we're not talking your typical toddler tantrums.
"They would last four to six hours, and we would call it being held hostage because at that time he's have these meltdowns we couldn't go anywhere. We couldn't do anything. We couldn't leave where we were," said Robin.
For the next three and a half years the McCune's would see more than 15 doctors with diagnoses ranging from autism, to schizophrenia, to just bad parenting. The drugs prescribed made Isak even worse.
Then one doctor suggested it could be Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep, or P.A.N.D.A.S.
Isak's father Adam McCune said, "Rheumatic fever, I think a lot of people at least have a baseline understanding of what that is. It's strep that kind of goes to the heart. And P.A.N.D.A.S. is strep that goes to the brain."
In Isak's case he was atypical for strep, and not showing the common symptoms of fever, sore throat, and chills. But with the correct antibiotic, in four days he was a different child.
Adam, said, "It was like he was back after not seeing him for almost four years. Here he was again. Here's this precocious, smart, loving boy that we knew was underneath all this that showed up again."
While they're happy Isak is getting better, the McCune's are also angry, saying their son virtually lost three and a half years of his childhood because of one misdiagnosis after the next.
If you would like to learn more, there's a P.A.N.D.A.S. conference on Saturday, October 11th, at the SERESC Conference Center in Bedford from 1pm to 6pm. There will be a panel of experts there to speak and answer questions. Go online to nepandasparents.com for more information.
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