That’s a cute, cuddly sounding acronym for something that’s got a far more ominous — and accurate — full name.
Pandas stands for Pediatric Autoimmune Neuropsychiatric Disorders associated with Streptococcal infections.
It’s a nasty disorder that manifests itself as an abrupt change in behavior in children, who can go from being regular, cute, sometimes-annoying-but-more-often-endearing small people to terrified, anxious, hostile strangers.
For years, doctors have known that the strep virus can manifest itself later as rheumatic fever and Sydenham chorea, a neurological disease that causes rapid involuntary movement.
Remember Beth, the saintly sister in Louisa May Alcott’s “Little Women”? Beth nursed a poor, sick family, caught scarlet fever — a form of strep — only sort of got better, faded, and then years later she died, of rheumatic fever. Classic.
As Dr. Sandra Gold of Englewood and others have come to learn, strep also can turn into Pandas. It’s a form of encephalitis.
There are cells — th 17 cells, Dr. Gold said — “that bond to the olfactory nerve, and travel up to the blood-brain barrier, and alert the barrier to open. And it does open. We don’t know why the th 17 cell has the ability to go through that barrier, but it does.”
Once that happens, she said, the child’s behavior changes. “Once the infection goes into the brain, it can become OCD” — obsessive compulsive disorder — “anxiety, hostility, anorexia, insomnia. The presenting symptoms can be very varied, but the main thing is that they come suddenly.
“If you have a kid who, say, has insomnia from birth and it just gets worse, that’s not Pandas. The abrupt onset is the key.”
Dr. Gold speaks from personal experience. “My grandson, Max, got in a van to go to camp with his best friend, happy as can be. And they arrived 20 minutes later and he couldn’t get out of the car.
“This isn’t just a story about Max, though,”’ she said.
And in fact, Max Seeling is fine. He wasn’t for some time; he acted out, and his parents despaired. But, Dr. Gold said, “Arnold” — that’s her late husband, the pediatric neurologist Dr. Arnold Gold, who died just a few weeks ago — “told her to get a strep test.” The pediatrician didn’t think it was at all necessary, but because the instruction was coming from the renowned Dr. Arnold Gold, the test was done.
It was positive.
Max didn’t get better with the diagnosis. It took treatment. It took time — eight years. Max wrote about the experience. “Through those long eight years I have felt scared, abnormal, different,” he said. “I thought kids would tease me. I cried myself to sleep many nights fearing how people would react to me…
“Not only did my emotions change but my physical being changed as well. It felt as if I had a pit in my stomach a ton of the time. I breathed more heavily and talked less. Whenever I spoke less everyone knew something was wrong.”
Now he’s okay, he writes — and his grandmother confirms.
There’s also the story of Emilia, a 5½-year-old whose mother reports that a week after her daughter’s bout with strep, “I started noticing some very odd behavior with my daughter — extremely out of the ordinary for my usually happy-go-lucky child. She suddenly became very angry, I would actually say raging mad during simple conversation. I remember driving and her screaming and kicking the back of seats. She was having obsessive compulsive thoughts & could not stop the thoughts from coming. She was following me around & confessing them repeatedly… She felt the need to urinate constantly. Clothing that she used to wear with no issue suddenly was intolerable…”
Pandas eventually was diagnosed, and Emilia is doing much better, “But we don’t know if Pandas is done with her yet,” her mother writes.
It is important for parents to pay attention, Dr. Gold said, and to take action as quickly as they can.
This weekend, the Pandas Network — which as its name implies provides support and advice and connections to parents and children suffering from the syndrome — is holding a conference at Columbia University Medical Center. On Saturday, March 10, medical professionals are invited; the program on Sunday, March 11 is open to public, and the group hopes to attract parents. There is no entrance fee.
Diana Pohlman, who lives in Stanford, California, is the founder and executive director of the Pandas Network. “It can take four or five months for the antigen to percolate and bubble and bubble and burst through the blood-brain barrier,” she said. “The thing that’s hardest for pediatricians is that they’ve forgotten about the strep, which happened maybe four or five months earlier. Maybe the child had strep in January, and now it’s May.
“So the mommy goes back to the doctor and reminds him, and the doctor says ‘Oh yeah. Right.’ It is a problem with strep education.”
She’s personally involved because her daughter had Pandas.
“A mother can notice an abrupt, acute, dramatic change in personality,” she said. “Usually it’s intense anxiety that begins to increase into obsessive compulsive thoughts, which come from a person with intense anxiety issues. Obsessive compulsive behavior doesn’t mean that you are counting your Cheerios.
“The parent might also notice pallor. They look fatigued. They look tired. They look unwell. Generally they will develop mild to moderate neurological symptoms, which will come and go. And they will have sensory changes. Things will taste different. And they urinate more frequently, often in their beds.
“Eventually the child’s personality will begin to change. They can be aggressive, start to use baby talk, can’t think, can’t talk, can’t write. Their logical thinking is disordered. Their handwriting starts getting bigger and bigger, until it covers the entire page.
“The longer you are debilitated, the more completely everything starts to fall apart.
“It’s serious business,” Ms. Pohlman said.
So if your child has had strep, and then starts to act oddly, test for it. If the swab doesn’t show anything, “re-swab,” she said.
Ms. Pohlman and Dr. Gold also both suggest that parents consider going to the parents’ part of the conference this weekend. For information about the free conference, go to www.pandasnetwork.org/common-threads-conference-2018/. And you can learn more about Pandas in general at www.pandasnetwork.org.