Henderson County boy has debilitating disorder caused by strep
Click here for updates on this story
HENDERSON COUNTY, N.C. (WLOS) — For some getting strep can be much more than a sore throat. For those with PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcus, it can come with debilitating symptoms.
Creed Crotts, a fifth-grader in Henderson County, knows firsthand.
“It just makes me scared. What I see is people holding weapons and hurting me, and that’s part of it,” Crotts said, describing some of what he goes through.
It’s the side of strep throat you’ve probably never heard of.
“I have seen a couple young kids who were basically in special ed classes, and, as soon as they got on antibiotics, they got mainstreamed and rose to the top of their class,” said Dr. James Biddle, of Asheville Integrative Medicine.
Biddle said he saw his first case of it seven years ago. Since then he’s treated 15 people with it.
The Crotts family calls it the invisible illness.
“Some people just don’t understand what’s going on with me,” Crotts said.
Crotts’ mom Brooke said she remembers when Creed was diagnosed.
She said it was a relief because she finally had an answer for what her son had been going through for several years.
“It was scary. He was 7 and had major OCD, thinking he was eating something that he never ate or he was going to die. It was OCD of germs,” Crotts said.
Since then, Creed has gotten his tonsils taken out, but he still gets strep two to three times a year.
The flareups can leave him humiliated.
“It’s like a horrible process of going to school because you get upset, you get in trouble a bunch because you don’t listen that well. And I’ve been taking this medicine. It makes really tired and sleepy,” Creed said.
All he can do is take antibiotics each time.
They are the same antibiotics used to treat regular strep, except he has to take them from longer periods of time before his symptoms clear.
“It takes weeks to months to sometimes almost a year to get back, and then you get it again, the strep. And then you go backwards,” Crotts said.
Biddle said PANDAS is caused by the body fighting the strep infection in the wrong spot.
“All this is due to an inflammation of the brain that’s caused by the immune system attacking a protein on the brain that’s identical or similar to a protein on the strep,” Biddle said.
It’s detected by a blood test, not a throat swab. It also takes a doctor who knows to test for it.
“I would say most family practice doctors and pediatricians aren’t even aware of it,” Biddle said.
Some symptoms of the disorder include extreme sleepiness, hallucinations, handwriting difficulty, disordered eating and frequent urination.
“They’ll have to retrain to go to the bathroom, learn all over again because they’ll forget. They’ll forget to brush their teeth,” Brooke Crotts said.
Crotts said they lean on support from others in the PANDAS community.
She urges parents to keep their kids home from school when they have strep so they can’t spread it to people like her son.
Right now, there is no cure.
“It’s a constant worry, especially during season and having to go to school and all the germs spread,” she said.
In what Creed calls a horrible cycle, he and his family wait for the next time he gets strep.
“It doesn’t completely go away. It just stays there until you have the same feelings I have. Then you know it came back,” Creed said.
Please note: This content carries a strict local market embargo. If you share the same market as the contributor of this article, you may not use it on any platform.
