ATLANTA — Millions of people get strep throat every year. Kids are especially prone, but for a small percentage, this common childhood sickness can turn into extreme behavior changes.
It’s a disorder called PANDAS. Its an acronym that stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.
MORE INFORMATION: Southeastern PANS/PANDAS Association
While most people have never heard of it, the legislature just passed a resolution about it.
Katherine Butler thought her story was about being a young widow and single mother after her husband died young, but when her 4-year-old daughter suddenly changed, she realized her fight was just beginning.
“In some ways PANDAS is even harder. It has been harder than being a young widow,” she said.
Her child, Addie, who was once energetic and independent suddenly became clingy, anxious, and aggressive.
“There are nights where she’ll just scream and say I hate you, and I want to cut your head off,” Butler said. “She’ll say some pretty hurtful things. And later she’ll cry and say ‘Mommy, I don’t want to say those things. I don’t know why I say those things.’”
Pediatricians kept telling her she was fine.
“Little kids are weird. She’s fine!” Butler says they told her. “And I said, ‘She’s not.’”
One night Addie screamed for almost two hours that her toes wouldn’t cross.
“It wasn’t a crying that kids her age wouldn't do. It was a screaming, hurting. I thought she had appendicitis,” she said.
Butler says this was the turning point.
“I remember thinking that this is definitely not normal,” she said.
Doctors ended up diagnosing Addie with PANDAS. It’s a disorder some children get after they have strep. About 1 in 200 children are affected.
“We speculate that PANDAS comes from an autoimmune reaction. The body, because of the strep infection, makes antibodies that seem to attack parts of the brain that affect the brain chemicals and trigger the OCD or severe anxiety,” Dr. Sujatha Reddy explained.
What's the difference between this condition and regular Obsessive Compulsive Disorder or anxiety?
“The difference is if you give my daughter ibuprofen, it’s like giving an ADD child Ritalin. It totally calms her down. It reduces the brain inflammation,” Butler said.
Connection to congress
The disorder caught the attention of the Georgia legislature this session. House Resolution 590 created a House Study Committee to look at problems families with PANDAS face, like lack of education from some physicians and insurance barriers.
“We paid $32,000 for two high dose IVIG treatments in two months for our oldest son. He was suicidal at 8 years old, so if your 8-year-old is suicidal, you’re going to do what you need to do to get them help,” Heather Ward said.
Mothers like Ward say most people will never know what it’s like inside their home, but for those who do, they’re working to get support.
“It’s just such a private condition. You can feel very alone,” Butler said.
Dr. Reddy says most children who get strep throat will never develop PANDAS.
“So far, this does seem to be a rare autoimmune disease, and for the most part, most parents won’t have to be worried about this,” Dr. Reddy said.
The mothers argue it’s not rare as much as it’s rarely diagnosed. Dr. Reddy says if you are concerned, talk to your doctor.
“It is a difficult diagnosis to make. If you’re concerned that your child is showing symptoms of severe anxiety all of a sudden, I think it’s very reasonable to ask your pediatrician to test for strep. Or, if they’ve had strep in the past, bring this up.”