Carrie Minton and her family’s nightmare began in January of 2018 when her eldest son Maxwell – who was 7 at the time – developed strep throat and walking pneumonia.

Antibiotics killed the infection but left Max with a cough so strong it made his head snap back and forth with enough force to hurt. Doctors said it was a motor tic that sometimes develops after pneumonia but that it would go away on its own.

And as so many families know, it’s rare for one kid to get sick without another following suit. Maxwell’s little brother Liam (then 6) developed an unknown virus and walking pneumonia as well and was put on antibiotics.

The Z-packs both boys had taken did their jobs, but Maxwell came home from school one day with some curious symptoms and his mother wrote in a story for Love What Matters that all of the sudden, he was a “different boy.” He had a massive panic attack that day.

“He said he needed to turn the lights off. It was too bright. He wanted to hide behind the couch. He snapped and growled at his little brother and sister and wanted to be left alone. ‘Did something happen at school?,’ I asked him. ‘No,’ he replied, but he began crying like he’d never cried before. It was a horrible screeching sound, and it quickly turned into a panic attack… something none of our kids had never experienced.”

Minton had no idea what to do and even thought something horrible might have happened to him at school that day. But the panic attacks soon became a daily occurrence and they soon got frightening, turning into “rages.”

“I recall one of the first bad ones,” Minton wrote. “He wanted a popsicle, and I said no, because he already had something sugary. He literally turned into a rabid wild animal! His hands turned into claws, his face changed and looked evil…he was foaming at the mouth, hitting the glass oven door over and over, and growling. I was afraid he would hurt himself or someone else, so I wrapped my body around his and we sat on the kitchen floor as he thrashed and growled.”

Two weeks went by and things continued to spiral out of control. Minton even had to hide the kitchen knives for everyone’s safety.

One day at her Bible study group, Minton got a suggestion to look into a condition called PANDAS after a woman said her daughter had experienced something similar after she had developed strep throat. Alas, Minton didn’t think it sounded like Maxwell’s condition enough to look into it at the time and took him to his doctor instead.

But the doctor had no answers and suggested the Maxwell might have a mental illness or be trying to manipulate his parents with his behavior. Minton knew that wasn’t right and felt her only option was to read more about PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.

She realized that Maxwell did, indeed, have some of the symptoms that characterize the disorder, which includes OCD, “motor tics, rages, anxiety, food aversion, school refusal, decline in handwriting and math, and emotional liability.”

Minton’s research led her to a recommendation from the National Institute of Health to try Motrin for inflammation – and it worked!

“I began Motrin around the clock and Maxwell’s rages were reduced by 80-90%! It was a miracle!!”

But she wanted him under a doctor’s care. Alas, PANDAS requires one to have strep antibodies in their system and Maxwell’s tests showed none. A doctor who had treated the condition before said she couldn’t in good conscience treat Maxwell since he didn’t have the antibodies.

To make matters worse, Maxwell’s younger brother Liam began exhibiting strange behavior as well.

“He began a throat clearing tic, started hoarding stuffed animals, and had to arrange them a certain way every night or he couldn’t go to sleep. He told me he thought people were watching him and he was terrified. He also said he was sad every day and didn’t know why.”

After the family doctor saw both children and heard more about their symptoms, she ran more tests, including one suggested by Minton for mycoplasma, which can cause pneumonia.

Both boys tested off the charts for the bacteria – and so did their little sister, although she had no symptoms. This bacteria is resistant to antibiotics.

It turns out that while the children didn’t have PANDAS, they had a similar condition called PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). The two conditions are related and have many of the same symptoms.

PANS is a vague, catch-all term for children who develop uncharacteristic neuropsychiatric symptoms overnight and is thought to be triggered by infections and other inflammatory reactions.

PANS is incredibly rare, partly because many doctors don’t diagnose it – in fact, the medical community is divided on whether or not it is even a real, classifiable illness.

Unfortunately, since the medical community is not fully on board with the diagnosis, there is no standard treatment. This leaves parents to their own devices to piece together treatments from Internet research, some of which advocates useless “natural cures.” But in desperation, parents will try nearly anything.

Both boys are now improving but still need accommodations at school and are on strict diets. But Minton is just grateful that the “normal” days are becoming more frequent.

You can click here to see her whole story.

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Source: Undark, Love What Matters, Stanford Medicine