We Thought My 6-Year-Old Grandson Was Misbehaving. We Were Wrong

When sudden behavioral changes led us to a little-known condition called PANS/PANDAS.

When Our Joy Boy Changed

I called my grandson Maverick my “Joy Boy.”

The nickname fit him perfectly. From the time he was born, Maverick was affectionate, funny and full of life. Joy seemed to spill out of him. If someone knocked over a tower he'd built, he'd shrug and say, “It's no big deal.” When his daddy worked on a project, Maverick would pat him on the back and say, “Good job, Dada. Good job.”

To Maverick, the world was a pretty wonderful place, and the people in it were worth cheering for.

Then, almost overnight, everything changed.

The little boy who once said, “It's no big deal” suddenly seemed bothered by everything. Small frustrations ignited anger. He argued and sometimes wanted to fight. The smiles in our family pictures became scowls. Our affectionate, easygoing little boy became angry, aloof and sad.

But those weren't the only changes.

Around the same time, Maverick began repeatedly picking at his ear. His speech changed, too. He developed a stutter and began repeating words and phrases several times before he could finish a sentence. His eating habits changed. Foods he once enjoyed became foods he refused to eat. He struggled to fall asleep, couldn't sleep through the night, and began having nightmares.

It wasn't one behavior that changed. It seemed as though everything changed at once.

We all asked, “Why is he behaving this way?”

But we were asking the wrong question.

When Behavior Tells a Different Story

When a child becomes angry, aggressive or defiant, adults naturally focus on stopping the behavior. We correct. We discipline. We wonder whether the child is spoiled, manipulative or simply testing boundaries.

And when we see another child melting down in a restaurant, grocery store, or classroom, it's easy to make assumptions about the adults raising that child, too.

Why don't they discipline him? Why can't they control their kid?

I understand that reaction. I've said those same things.

But Maverick taught me something I wish I'd understood sooner. Before we label a child defiant—or judge the adults raising them—we should ask a different question:

What is this behavior trying to tell us?

A Diagnosis We Never Saw Coming

One day, I heard a woman on television describe the sudden, drastic behavioral changes in her son. He had been diagnosed with something I'd never heard of: PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

I immediately thought, This sounds like Maverick.

Maverick had experienced two significant cases of strep throat. Could there be a connection?

His mother had also learned about PANS/PANDAS and was already trying to have him evaluated. After testing and searching for answers, Maverick's physician diagnosed him with PANS/PANDAS at age 7.

According to the National Institute of Mental Health, PANS and PANDAS involve the sudden onset of significant neuropsychiatric symptoms. PANS is characterized by abrupt obsessive-compulsive symptoms or severely restricted eating, accompanied by other symptoms that may include anxiety, irritability, behavioral regression, changes in school performance and sleep disturbances. PANDAS involves a related presentation associated with streptococcal infections and typically first appears between age 3 and puberty.

There is no laboratory test that by itself confirms PANS or PANDAS, so physicians must consider other possible causes. The American Academy of Pediatrics has described PANS as likely a valid diagnosis while emphasizing that much remains unknown and more research is needed.

There's one word families like ours understand immediately: sudden.

You know your child, and when that child seems to change almost overnight, you notice.

When to Look Beyond Discipline

Not every child who suddenly starts behaving differently has PANS or PANDAS, and not every tantrum is a medical condition. Children still need boundaries, guidance and discipline.

But a sudden, dramatic change in a child's personality deserves our attention. Don't dismiss it simply as a behavior problem.

If a child develops abrupt behavioral changes—particularly obsessive-compulsive symptoms, significant changes in eating or sleeping habits, regression, tics, severe anger, unusual repetitive behaviors or other significant psychiatric or neurological symptoms—talk with your pediatrician. Write down when the changes began, whether they appeared together and any illnesses that occurred around that time.

What Parents and Grandparents Can Do

If your child or grandchild suddenly seems like a different person, don't be afraid to ask your pediatrician whether PANS or PANDAS could be a possibility. Tell the doctor about all the changes you've noticed, not just the behaviors that concern you most. Ask what medical conditions might explain the symptoms and whether further evaluation is needed.

A history of strep throat, particularly around the time symptoms began, is important to mention.

But a previous strep infection alone doesn't mean a child has PANDAS. A thorough medical evaluation is necessary to consider other possible causes.

Getting Maverick evaluated took time. Finding a doctor experienced with PANS/PANDAS wasn't easy. If your pediatrician is unfamiliar with these conditions, ask for a referral to a clinician who has experience evaluating children with sudden neuropsychiatric symptoms.

The following resources may help families learn more and find appropriate care:

• National Institute of Mental Health — PANS and PANDAS: Questions and Answers

• American Academy of Pediatrics — PANS Clinical Report

• PANDAS Physicians Network — Find a Practitioner

• PANDAS Network — How to Find the Right Doctor

These resources are starting points, not substitutes for medical evaluation. The practitioner directory can help families identify clinicians familiar with PANS/PANDAS, although inclusion does not guarantee a particular level of expertise.

Our Joy Boy Is Still There

Our family is still learning and searching for the best ways to help Maverick. But we've already learned something that extends far beyond one diagnosis.

Our Joy Boy didn't disappear.

When Maverick is angry, he's still Maverick. When he's struggling, he's still Maverick. And when his emotions overwhelm him and he can't find the words to explain what he's feeling, he's still our

Joy Boy.

Underneath the anger, frustration, and behaviors we don't always understand is the same little boy who once shrugged his shoulders and said, “It's no big deal.” The same little boy who cheered for his daddy and found joy in the simplest things. We still catch glimpses of that little boy in his smile, his laughter, and the moments when the weight of what he's experiencing seems to lift.

PANS/PANDAS may have changed the way Maverick experiences the world, but it hasn't changed his place in ours.

He's still our Joy Boy. And he always will be.

Before We Judge, Let's See the Child

October 9 is PANS/PANDAS Awareness Day. I'm sharing Maverick's story because awareness should change more than what we know about a medical condition. It should change the way we see the child standing in front of us.

Sometimes what looks like “I won't behave” may really mean, “Something isn't right. I need help.”

Before we judge the behavior, let's make sure we haven't missed the child.