South Shore families turn struggle to diagnose, treat rare disease into statewide movement

The Massachusetts Statehouse. (Photo by Ana Goni-Lessan/BU News Service)

By Katherine Sabido
Boston University Statehouse Program

BOSTON – “Our kids were super-social, playdates all the time, very independent. … They were leading this happy-go-lucky life surrounded by friends,” said Kim Panton, of Duxbury, recalling the days before her children fell victim to a rare disease known as PANDAS. “Then suddenly, they just couldn’t leave my side. … Socialization stopped completely, and their lives shut down.”

After two years of wrong diagnoses by doctors at Massachusetts’ leading medical institutions, Kim and Jim Panton learned that their children might have PANDAS, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, which practitioners in the state were not yet capable of treating.

“There were zero resources available in our community, and zero resources available in our state,” said Kim Panton.

What is PANDAS?

PANDAS causes a child’s immune system to attack healthy brain cells. After exposure to a strep infection, the brain becomes inflamed, and the result is a sudden onset of obsessive-compulsive symptoms and other cognitive, behavioral or neurological symptoms, according to a 1998 study conducted by Dr. Susan Swedo, who first identified the disease.

Symptoms can vary widely, but most commonly include the sudden onset of obsessive behaviors, tics, severe separation anxiety and regressive communication skills. The disease will only present itself between the age of 3 and puberty.

Known treatments include antibiotics and IVIG, which is a product made up of antibodies that help weak immune systems fight infections. IVIG is proven to work for PANDAS patients because the disease constitutes an autoimmune irregularity.

If untreated, it can cause permanent debilitation of the body and the brain.

PANDAS/PANS comes on quickly

An overnight development of full-body tic movements by one of the Pantons’ children alerted clinical nurse specialist Peggy Chapman, who has a private practice in Hingham, to run blood work that would determine the need for further consultations for PANDAS and necessary treatments.

Kim Panton turned to national resources such as the National PANDAS Network, and after explaining her children’s symptoms, the organization’s founder instructed her to fly to Washington, D.C., immediately to see a doctor who could treat her sons.

“I thought to myself, I can’t believe I live in a state where the hospitals are top-notch and I can’t find one provider that can help my family,” she said, recalling her initial shock.

This story took place 10 years ago.

The Pantons are one of the many families in the state whose children have PANDAS but could not access doctors equipped to diagnose and treat the disease, which, without the strep infection, is called PANS.

But over the last 10 years, those families have worked with medical professionals and legislators to make sure children and families who contract PANDAS/PANS in the future will never have to suffer from the lack of resources that they did.

South Shore families fight for recognition

The fight for PANDAS/PANS recognition started in 2013 and was won in 2020 through efforts co-led by South Shore parents, practitioners and legislators. In January, the PANDAS/PANS insurance mandate was signed into law and the PANDAS/PANS Advisory Council to the Department of Public Health was established.

The Pantons have always been vocal in their PANDAS/PANS advocacy, including Kim Panton’s co-founding status in the New England PANS/PANDAS Association, and they recognize the win this legislation brings for many families because IVIG costs can be upward of $10,000 per session.

“I think the passage of this legislation was a very critical step in helping families deal with this disease, and I’m grateful for all the work that was done that led to this bill getting passed,” said Kim Panton. “However, just because insurance companies are now being mandated to pay for treatment, it doesn’t solve the problem of lack of treatment options in our state. We’re hopeful that the advisory council will become a powerful tool.”

Insurance companies required to cover PANDAS/PANS

State Rep. Josh Cutler, a Democrat whose district covers Pembroke, Hanson and parts of Duxbury, led the House’s final legislative push to require insurance companies to provide coverage for treatment of PANDAS/PANS in 2019. He filed a revised version of a bill that was first introduced and filed in three previous sessions by former Rep. John Scibak, D-South Hadley. 

Cutler said one of the biggest issues in dealing with PANDAS/PANS is the lack of recognition it faces in both the public sphere and the medical field. 

“Not everybody’s familiar with PANDAS/PANS, even now,” said Cutler. “And that’s the other reason we included an advisory council under the Department of Public Health in the bill. It is just as important an aspect of this — creating awareness, bringing in experts, so that when the landscape changes… the Department of Public Health will still have that expertise that they can tap into and communicate to parents.” 

Cutler credits the parent advocates who maintained pressure on legislators, including Kim Panton, who initially introduced him to the issue and the advisory council’s co-facilitators, Jennifer Vitelli, of Marshfield, and Sheilah Gauch, of Melrose. 

“(When) you hear from the parents and kids themselves, it really has an impact on you,” said Cutler. “I can remember one family talking about putting treatments on their credit cards, remortgaging their home, racking up $45,000 in credit card debt, just to cover this treatment that their doctor had recommended. It was medically prescribed, but their insurance company wouldn’t cover it, and that just runs counter to everything that we think insurance should be about and health care should be about.” 

Massachusetts Coalition for PANDAS/PANS Legislation

Vitelli and Gauch, who also have children diagnosed with PANDAS, were instrumental in the developments that took place during the 2019-20 session. They created the Massachusetts Coalition for PANDAS/PANS Legislation.

“It was our dream to not only get the insurance mandate passed but (to also establish) a DPH PANDAS/PANS Advisory Council … to have both come together in the same bill is a testimony to the commonwealth’s commitment to pediatric mental health,” Vitelli and Gauch wrote in a joint statement.

“None of this would have happened organically through government,” said state Sen. Patrick O’Connor, R-Weymouth, who previously co-sponsored a Senate version of the insurance legislation. “The best form of public policy is when concerned citizens get together and act as one, and this is definitely one of those examples.”

Differing medical opinions on PANDAS/PANS

The Pantons said that getting others to understand the disease is exceptionally hard because PANDAS/PANS symptoms vary widely from case to case, and the only consistent aspect is the sudden nature of their arrival.

The fight becomes even harder when those within the medical field have differing opinions on the disease’s existence.

“When you go to your pediatrician, and you try to explain to them that this happened overnight, a lot of the time the pediatricians will try to come back and say, ‘Are there any changes happening in the home? Has anybody lost their job? Is there increased fighting within the family?’ They’re looking for an explanation as to why this happened because it really is so illogical,” said Kim Panton.

Not all practitioners are knowledgeable enough to diagnose a child with PANDAS/PANS because of the lack of research and support from the medical field, which is not exclusive to Massachusetts.

Chapman, a member of the advisory council and the practitioner who identified PANDAS in the Panton children, said the American Academy of Pediatrics has yet to recognize PANDAS/PANS and some neurologists continue to deny its existence while publishing articles that refute the research conducted by Swedo and others.

Jim Panton explained how the controversy translates to dangerous treatment suggestions for children and fuels denial of the disease’s existence among non-medical circles as well. 

“(Doctors) start looking for severe mental health issues (and) start using these diagnoses that you would only hear for older people,” said Jim Panton. “It’s amazing how they didn’t hesitate to use off-label (substances) to try and treat severe psychiatric issues. It’s crazy.”

PANDAS/PANS resources more readily available

Brendan and Valerie Fitzpatrick, of Marshfield, are parents of twin boys who were diagnosed with PANDAS at the end of the summer.

Their experience with finding resources draws a stark contrast to that of the Pantons and Vitellis. When the Fitzpatricks told their children’s counselor about the sudden onset of obsessive behaviors, the counselor quickly suggested that they test for PANDAS.

“I think we’ve been very fortunate in that we had a mild situation to begin with, and that there’s so much more awareness now,” said Valerie Fitzpatrick. “We’re starting light years ahead of where they were a decade ago, and after meeting (those families), it finally seemed like there could be a light at the end of this tunnel.”

And while resources in the state have increased over the last decade, they are still slim. Chapman, who currently treats PANS, said the lack of facilities and doctors who treat it is why she must postpone her retirement.

“I just can’t sleep at night thinking about all these people, so what I hope to do is train others,” said Chapman, reaffirming others’ hopes for the advisory council. “My goal is that we come out of this advisory council with systems that support the families. I want (PANDAS/PANS) to be treated as seriously as other life-threatening diseases.”

If you are concerned that your child may be suffering from PANDAS or PANS, please contact your medical provider. Learn more about resources in the South Shore and New England.

This article originally appeared in the Patriot Ledger.

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