For many parents, PANS/PANDAS is a mystery.

PA Shira Verschleiser has been practicing in Lakewood for 12 years, working with over 100  PANDAS patients and their families. Here, she shares insights and advice, shedding light on the multifaceted issue.

 

This summer, PA Shira Verschleiser penned a Coffee Room letter raising awareness about PANDAS.

After it was printed, she received many calls.

Some mothers said that their child had developed tics months earlier—one was twitching for a full year!—and many were told by their pediatrician that nothing can be done medically. One child was actually tested for elevated strep antibodies in the blood by his pediatrician, and when they were found elevated, the pediatrician treated it with a ten-day dose of Keflex (which is a bad match for PANDAS and too short of a course), and when the medication didn’t help, the parents were told nothing else could be done medically

“I was especially worried about this child,” says PA Verschleiser, “as medication for PANDAS works best when the disease is caught early. I was relieved when, baruch Hashem, the second medication we tried kicked in quickly.

“Another mother called about her fifteen-year-old. Besides for the age making it unlikely for this largely pre-puberty pediatric condition, with a little bit of digging, I learned that there was a family history of neurologic tics. So no, we couldn’t blame PANDAS this time!”

These calls highlight so much of the problem with PANDAS. There’s a lack of awareness in some parents, in others, an eagerness to pin any behavioral changes on PANDAS, and most of all, the need among all parents for more clarity on the disease.

What is PANS/PANDAS?

PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus, was first identified in the 1990s as a condition where neurological symptoms were triggered by strep throat infections. However, over time, the disorder has evolved and been renamed PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), a broader category that includes other infections like COVID, the flu, and even common viral illnesses.

PA Verschleiser explains, “The condition causes sudden and severe neuropsychiatric symptoms, often manifesting as tics (involuntary movements) and/or behavioral changes. While originally tied to strep infections, PANS is no longer limited to this cause.

“There are multiple theories as to what triggers a PANDAS response in a child. Pandasnetwork.org describes the disorder as a misdirected inflammatory response to the infection that causes swelling in the brain, which puts pressure on neurotransmitters and causes behavioral changes.”

Common symptoms and behaviors

Children with PANS experience a sudden and dramatic shift in behavior.

PA Verschleiser describes the indicators. “Common symptoms include involuntary movements such as blinking, nose twitching, a repetitive, non-productive cough, and hiking up pants. More invasive tics include shoulder rolling and even guttural noises. The other sign is sudden behavioral changes, most commonly defiant or aggressive behavior, anxiety, OCD-like tendencies, or cognitive regression.”

What distinguishes PANS from typical childhood behavior is the suddenness and severity of the behavior changes. “Parents may notice these changes quickly, sometimes overnight, which can be both confusing and frightening.”

Differentiating from other conditions

It can be challenging for parents to tell if their child’s behavior is related to PANS or if it’s simply part of growing up. There are a few key signs that can help differentiate.

“PANS symptoms typically appear suddenly and dramatically, often without any warning signs. Tics and involuntary movements are often more visible and easier to identify than purely behavioral changes, absent other factors that can cause these changes like the birth of a sibling, a new neighborhood, or bully in the classroom.”

Myth-busting: Strep antibodies in the blood ≠ PANS

A mother called PA Verschleiser. “My daughter’s PANS is flaring up again. I want to test strep antibody levels.”

“I told her, ‘Many things besides strep can cause a PANS flareup, including COVID and the flu.’ Hashem put the words in my mouth. This mother gasped. ‘We had COVID in the house last week. Now that I think about it, the last time she flared, my other kids had the flu.’”

It’s very common that parents want to test for strep-fighting antibodies in the blood as an indicator of PANS.

The PA explains why it’s an inaccurate diagnostic tool. “Modern medicine likes black and white testing, but unfortunately, there is no definitive test for PANS. The truth is that many things besides strep can cause PANS, and you can have a high antibody count without having PANS. The test tells us essentially nothing.

Voted most likely

Which kids tend to get PANS?

“It’s your sensory child,” says PA Verschleiser, “the one who’s in OT, the one who pushes you a little bit more, the one who makes being a parent a little bit harder. Now, suddenly, you’re making changes to your daily schedule based on this child. You’re not going to Bubby or Walmart or the wedding because of him. He was always a hard kid, but now he’s four steps more difficult, and he’s disrupting daily functioning. Less commonly, the easygoing, docile child suddenly becomes sensory, impulsive, or difficult. He never used to color on walls, have tantrums, and fall apart without warning. Now, he’s impossible; he’s just not himself.”

She’s also seen autistic children get PANS. “In those cases, triggers can’t be ruled out, and I really need to just trust the mother.”

As far as age goes, “I tell parents, ‘Don’t talk to me about PANS in a four-year-old.’ Sudden behavioral change is what four-year-olds are all about. They were adorable two- and three-year-olds. You suddenly expect more of them, but they never got the memo.

“At that age, it’s all about parenting. They need a lot of love, validation, and good, old-fashioned parenting to get through that year.”

At the other end of the spectrum, PANS is a very unlikely diagnosis once kids hit adolescence for two reasons.

“First, it’s a pediatric condition, and second, people really can develop neurological conditions such as OCD and schizophrenia at that age. Between age five and fourteen, though, I’m a lot less hesitant to diagnose PANS. Once you have lots of experience and really know how to what to look for, misdiagnosis is uncommon.”

Diagnosing PANS comes with little risk. “The disease is typically either confirmed or ruled out within 20 days of starting medication. Sometimes I try a second class of antibiotics for 15 days. If I still see no change, it’s almost always game over.”

Myth-busting: Behavioral strep vs. PANS

“I always differentiate between behavioral strep and PANS,” says PA Verschleiser. “When a child is acting out of control, it pays to start with a throat culture. If he’s positive and responds to antibiotics within a few days, I hope it’s behavioral strep. That means we can stop the meds after 10 days and not expect another outbreak until the next time he has strep. If it doesn’t seem to respond within 1–3 days, or the symptoms return after a day or two off meds, the child will need a PANDAS regiment.

“When the culture is negative, it’s more confusing because there’s no definitive test to rule in PANDAS and because the medication can take 15–20 days to kick in and might need a trial with a second class of antibiotics if the first type (class) fails.”

Treatment

Your child is diagnosed with PANS.

Now what?

“Zithromax and Augmentin have both shown success in treating PANS symptoms, and we start with one—usually Zithromax.”

PA Verschleiser outlines the process. “There should be improvement week by week. By the 20-day mark, the child should be at least 30 percent improved. If he isn’t, we stop the medication and try another one.”

Many kids plateau at around the 80 percent improvement mark—they’re almost back to themselves, but they’re not quite there yet.

“That last 20 percent of healing can take many months. I usually stop the meds after two weeks of being at the 80 percent point and let time do the rest of the healing.”

Myth-busting: Augmentin isn’t evil

A note about Augmentin: “For years, I avoided prescribing it for long-term use, knowing its potency and potential side effects. Then I met many patients of other doctors who had been on Augmentin long-term and didn’t report side effects. Today, I’m not afraid to use it, and my patients all do well with it.”

It’s interesting. “In general, the more benefit that’s needed, the fewer side effects patients experience.”

The role of environmental triggers

Before jumping to a diagnosis of PANS, it’s important to consider whether any environmental changes might have contributed to the child’s behavioral shift.

“Factors like Mommy having a baby, moving to a new home, bullying at school, marital discord, and of course more severe triggers like molestation and abuse can lead to behavioral changes that may resemble those of PANS,” PA Verschleiser clarifies.
“In such cases, it’s important to address these environmental factors and consider parenting strategies that can help. In general, people can be quick to blame behavioral problems on PANS. In these scenarios, I always ask, ‘Have you tried parenting this child? Do you have tools in your parenting skill set, or are you yelling and screaming ineffectively?’”

The importance of early detection

PANS is easier to treat when diagnosed early.

“Parents should trust their instincts and seek medical advice if they notice sudden changes in their child’s behavior. In some cases, symptoms can be severe, but early intervention can prevent the condition from escalating,” advises PA Verschleiser.

Prognosis and long-term outlook

The prognosis for children with PANS varies.

One-and-done: Some children experience a one-time flare-up that resolves with treatment and doesn’t return.

Relapse-remit: More commonly, children experience cycles of flare-ups and remissions. These children require repetitive management to control symptoms.

PANS can return with any new inflammatory exposure, such as an exposure to COVID, strep, or flu. If another family member has strep, medication may be used preventatively to help avoid flare-ups.

Chronic: Rarely, kids can’t go off medication; every time they do, the symptoms return. It sometimes works to slowly wean them off, otherwise, they grow out of it in 1–2 years.

Like most autoimmune diseases, PANS isn’t so much cured as managed, just like we don’t fix eczema with hydrocortisone, for example.

“That said,” she concludes, “almost all kids do eventually outgrow this childhood illness.”

Myth-busting:  Residual tics

Tics and behavioral changes often worsen during stressful events (e.g., at school or in social situations).

“Some parents worry that this means their child has relapsed. But if the tics reappear at the siddur play or in the dentist chair, they’re residual behaviors and not an indication of a relapse.”

Mental health matters

“My overall approach to my work is that my job is not simply to get kids through childhood alive. As crucial as physical health is, psychological health is way more important,” PA Verschleiser shares. “If a child is constantly getting in trouble, being yelled at, and feeling less loved because of his behavior, it can take a serious toll on his mental health. And if it’s all because of a treatable inflammation condition, it’s heartbreaking.

“Some parents and many practitioners will faster take their child to the OT, social worker, and psychiatrist for sudden-onset behavioral issues than try the 30-days course of antibiotics.

“They want the diagnosis proven, quantified, and outlined in black and white. The reality is that PANS is a psychiatric condition, so by its very nature, it can’t be quantified. At the same time, it’s also a post-infectious inflammatory condition, so it’s treatable with antibiotics.

“Medication usually takes just two weeks to show results—that’s way quicker than the therapist’s waiting list.”

For the risk of a month’s worth of antibiotics, the child can be healed.

Why not try it?

Navigating the PANS journey

PANS is a complex and often misunderstood condition. It requires careful diagnosis and treatment, as well as the support of parents who are dedicated to helping their child through difficult times. Early intervention is key, and with the right approach, many children experience significant improvement.

Parents should be proactive, trust their instincts, and not hesitate to seek professional guidance if they suspect their child may be suffering from PANS. With awareness and appropriate treatment, children can overcome these challenges and return to their normal, vibrant selves.

Recommendations

• org is a great resource for PANS/PANDAS information.
• When parents struggle with behavior issues, I like to recommend parenting books. Two favorites are Transforming the Difficult Child by Howard Glasser and Good Inside by Dr. Becky Kennedy. These books help parent difficult (and all!) children, even children suffering from PANDAS, because we still need to get by day by day even if we can label the behaviors as PANS!