PANDAS Syndrome: Strep & Child Behavior Shifts?

By Dr. Priya Sammani ( MBBS, DFM )

It’s a scenario I’ve heard from worried parents more than once. Your little one was just getting over a bout of strep throat, maybe even scarlet fever. They seemed on the mend. Then, almost overnight, things change. Suddenly, your child might be struggling with intense worries, repetitive behaviors, or new, jerky movements. It’s like a different child appeared. Confusing? Absolutely. Frightening? You bet. When we see these sudden, dramatic shifts, especially after a strep infection, one of the things we consider is something called PANDAS syndrome.

So, What Exactly Is PANDAS Syndrome?

PANDAS is a bit of a mouthful: it stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.” That’s a lot of big words, I know. Let’s break it down.

Essentially, it describes a situation where some children, after they’ve had a strep infection (like strep throat or scarlet fever, caused by Group A streptococcal bacteria), develop some pretty startling behavioral or movement issues. We’re talking about things like sudden obsessive-compulsive disorder (OCD) symptoms or tics – those involuntary movements or sounds.

Now, I want to be really honest here. The medical world is still learning a lot about PANDAS. The idea is that the child’s immune system, while trying to fight off the strep bacteria, gets a bit confused. It makes antibodies (our body’s little soldiers) to attack the strep, but these antibodies might mistakenly target parts of the child’s brain. Why? Because some parts of the brain cells can look a bit like the strep bacteria to these antibodies – a case of mistaken identity, really. This is what we think could lead to those sudden neuropsychiatric symptoms.

You might also hear about PANS, which is “Pediatric Acute-onset Neuropsychiatric Syndrome.” PANS is a broader term for when these sudden neuropsychiatric symptoms appear, and it can be linked to various infections, not just strep. Think of PANDAS as a specific type of PANS, where we have a strong suspicion that a strep infection is the trigger.

Who Might Be Affected by PANDAS Syndrome?

From what we’ve seen and what research suggests, PANDAS syndrome seems to pop up mostly in younger children, typically between the ages of 3 and 12. Some of us in the field have noticed it might be a bit more common in boys, but that’s not set in stone.

A child might be at a higher risk if they:

  • Get frequent strep infections.
  • Have a family history of autoimmune diseases (where the body attacks itself) or rheumatic fever (another illness that can follow a strep infection).

What about older kids or adults? Well, it seems pretty uncommon for teenagers or adults to develop these kinds of symptoms from a strep infection. Research is ongoing, though, as we always want to understand the full picture. It’s generally considered a rare condition overall.

What Changes Might You See? Understanding PANDAS Syndrome Symptoms

If PANDAS syndrome is at play, the symptoms often come on fast. Like, really suddenly. One day your child is fine, the next they’re quite different. These symptoms can also come and go, lasting a few days or weeks, then disappearing, only to pop up again. It can be a real rollercoaster for families.

The changes can be a mix of psychological and neurological things.

Psychological Signs to Watch For:

It can feel like your child’s personality has shifted. You might notice:

  • Obsessive-compulsive behaviors: New, intense fears or worries, or repetitive actions they feel they have to do.
  • Tics: Sudden, repetitive, involuntary movements (like eye blinking, shoulder shrugging) or sounds (like throat clearing, sniffing). These can look a bit like Tourette syndrome.
  • Anxiety or depression: They might become very clingy (separation anxiety), sad, or worried.
  • Mood swings: Sudden irritability or even rage, which is very out of character.
  • Bedwetting: Especially if they were previously dry at night.
  • Changes in eating: They might suddenly lose interest in food.
  • Sleep problems: Difficulty falling asleep or staying asleep.
  • ADHD-like symptoms: Increased fidgeting, trouble focusing.

Neurological Signs That Can Appear:

These are more about how their brain and body are connecting:

  • Motor skill changes: Their handwriting might suddenly get messy, or they might seem clumsier.
  • Poor school performance: Difficulty concentrating or learning new things.
  • Reduced coordination.
  • Sensitivity to light or sound: Things that didn’t bother them before might now be overwhelming.

How Do We Figure This Out? Diagnosing PANDAS Syndrome

This is one of the tricky parts – there isn’t a single, definitive lab test for PANDAS syndrome. We can’t just do a blood test and say, “Yep, that’s it.”

So, how do we approach it? Well, as your doctor, I’d start by really listening to your story. When did the symptoms start? What were they like? Was there a recent illness, especially a sore throat? I’ll do a thorough physical exam. We’ll look for signs of a current or recent strep infection, maybe doing a throat swab.

Diagnosing PANDAS often involves looking at a specific set of criteria:

  1. The presence of OCD and/or a tic disorder.
  2. Symptoms starting in childhood (usually 3 years old to puberty).
  3. The symptoms coming on very suddenly, or having a pattern of coming and going.
  4. A clear link in time to a Group A Strep infection (like a positive strep test).
  5. Other neurological signs, like hyperactivity or coordination issues.

It’s often a process of careful observation and ruling out other possibilities.

What Can We Do to Help? Treatment Approaches

If we suspect PANDAS syndrome, or if there’s an active strep infection, the first step is often antibiotics. If your child has a fever, a sore throat, or pain when swallowing, and we confirm strep, antibiotics are essential to clear the infection.

Beyond that, managing the neuropsychiatric symptoms is key.

  • Cognitive Behavioral Therapy (CBT): This is a type of talk therapy that can be incredibly helpful. A therapist trained in CBT can work with your child to develop strategies for managing obsessive thoughts, compulsive behaviors, and anxiety. For tics, a specific type of CBT called habit reversal training can be very effective.
  • In some cases, if symptoms are severe, other medications might be considered to help manage the OCD or tics, but this is always a careful discussion we’d have.
  • Sometimes, procedures like plasmapheresis (a blood-cleaning process) or intravenous immunoglobulin (IVIG) (giving antibodies from healthy donors) are discussed for very severe, treatment-resistant cases, but these are more intensive and usually considered by specialists.

We’ll discuss all the options and decide on the best path forward for your child, together.

Looking Ahead: What’s the Outlook?

I know this all sounds daunting. But there’s reason for hope. Many children with PANDAS syndrome do see their symptoms improve, especially with treatment for the strep infection and therapies like CBT. The goal of therapy is not just to reduce the symptoms but also to give your child the coping skills they need to manage these challenges and thrive. It can take time, and there might be ups and downs, but improvement is possible.

Can We Prevent PANDAS Syndrome?

The most straightforward way to think about preventing an illness linked to an infection is to try and prevent the infection itself. For PANDAS syndrome, this means doing our best to avoid strep infections. Encourage your child to:

  • Wash their hands often and well, especially before eating and after coughing or sneezing.
  • Use hand sanitizer when soap and water aren’t available.
  • Cover their mouth and nose with a tissue (or their elbow) when they cough or sneeze.
  • Try not to share food, drinks, or personal items like toothbrushes, especially when someone is sick.

If your child does get strep throat, getting prompt treatment with antibiotics is important.

Key Take-Home Messages About PANDAS Syndrome

This is a lot to take in, I understand. Here are the main things I’d like you to remember about PANDAS syndrome:

  • Sudden Onset: PANDAS involves a very abrupt, often dramatic, appearance of OCD-like symptoms, tics, or other behavioral changes in children.
  • Strep Connection: It’s linked to a recent Group A streptococcal infection (like strep throat).
  • Autoimmune Theory: The current thinking is that it’s an autoimmune response where antibodies mistakenly attack the brain.
  • Diagnosis is Clinical: There’s no single test; diagnosis is based on symptoms, history, and ruling out other causes.
  • Treatment Focuses on Strep and Symptoms: Antibiotics for the infection, and therapies like CBT for the behavioral and emotional challenges, are key.
  • Early Recognition Helps: If you see sudden, concerning changes in your child, especially after an illness, please talk to us.

You’re not alone in navigating this. It can be a puzzling and stressful journey for parents, but we’re here to help you and your child every step of the way. We’ll work together to understand what’s happening and find the best support.

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