CORONAVIRUS (COVID-19) RESOURCE CENTER Read More
Add To Favorites

Pediatric condition has parents fighting for care 'I haven't seen my son since August:' Parents advocate for awareness, education on debilitating pediatric condition PANDAS hammer

Richmond Times-Dispatch - 5/27/2017

"Families are in complete and total chaos with this, and trying to figure out how to pay these things on top of it, it's just another burden for families. It's a huge barrier for care."

Jessica Gavin, founder and president of the Richmond-based PANS Research & Advocacy Initiative

The diagnosis alone cost $1,200.

Jill and Bryan Lemon were sure it was PANDAS, and they also knew that, despite several interactions that their daughter, Tanner, had with medical providers over the previous 18 months, nobody had mentioned that word to them.

But they saw, for over a year, the anxiety attacks that consumed Tanner, her sudden fear of death, tornadoes and crossing bodies of water, her insistence on following her parents around every room in the house, her cough-like tic, her sudden episodes that Jill Lemon can only describe as "rage attacks."

"It was scary to watch her like that, but it was scary to watch me react to it," Lemon said. "I just didn't like the parent that I was becoming, or how it was affecting my other children."

The one time Jill Lemon brought it up, the provider nodded, wrote the term down, and never acknowledged it again.

So the Midlothian family did not waste time going to a pediatrician with their concerns, once Tanner's symptoms became so severe that Lemon knew it was bigger than her family, she said. They went straight to a specialist in Washington, D.C., who confirmed her suspicions.

In the 18 months after that $1,200 visit in January 2016, the Lemons spent more than $2,000 in additional costs - on co-pays, follow-up appointments with the specialist, lab work and other medical procedures.

The cost has left behind a lingering question for the Lemons as they grapple with the condition and wonder what Tanner's future will look like: What do poor families do?

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term refers to children who, following an infection such as strep throat, abruptly develop obsessive compulsive disorder, tics, severe anxiety and a variety of other behavioral issues.

A broader term, PANS, refers to the same sudden onset of OCD whether or not it was triggered by a strep throat infection.

PANS is relatively young in terms of research and understanding. It only came to the attention of researchers at the National Institute of Mental Health, or NIMH, in the 1990s, and is still far from a widely-known term among parents and even pediatricians.

Treatments can range from antibiotics to steroids to a regimen of over-the-counter medications like ibuprofen. But for the most severe cases, it can require outrageously expensive procedures that insurers rarely cover.

It's hard for researchers to know how many kids might have PANS. In 2010 Dr. Susan Swedo - one of the NIMH researchers who coined the term PANDAS in the 1990s - estimated that as many as 25 percent of children with OCD and tic disorders - nearly 160,000 children based on recent estimates - might actually have PANS. But some doubt the condition exists at all.

"The main controversy is - is it a condition caused by (an immune response to an) infection, or do such patients just have psychiatric disorders?" said Dr. Wei Zhao, an immunologist for VCU Health System who treats patients with PANS. "The key here is sudden onset. So many parents can remember that, 'My child was completely normal until such a day, and we don't know what happened, and then he became a different person.'"

Despite that controversy, though, more providers and parents are getting behind the NIMH research, possibly because treating the inflammation that is causing the sudden onset of behavioral issues actually works to stop the patient's symptoms, which is not the case in classic OCD or anxiety cases.

As awareness gathers, so too might research, parents and advocacy organizations hope. During its most recent session, Virginia'sGeneral Assembly approved a 15-member advisory council to advise the state's health commissioner on PANS. The state is in the process of appointing members to the council.

"I feel that creating the advisory council will bring the awareness that's needed for this debilitating disease," said Del. Eileen Filler-Corn, D-Fairfax, who sponsored the legislation. "With greater knowledge, people will be able to recognize it and diagnose it. It could mean less heartache for the parents, and kids will be diagnosed - and diagnosed properly."

For most children, the condition does not go away - though Zhao said he has seen PANS flare-ups grow less severe over time in some patients. But to end a flare and to ease the anxiety and OCD, typically medical providers must determine what the underlying condition is - such as a bacteria or infection - that is causing the behavioral issues.

Jessica Gavin, founder and president of the Richmond-based PANS Research & Advocacy Initiative - which advocates for broader understanding and treatment of PANS - describes a flare of PANS as losing her children. Sometimes, a flare can last months - in the most extreme cases, years - before it is successfully treated.

When her son is having a flare, Gavin said it doesn't just feel like her son is in a bad mood - it feels like someone else is occupying his space. Dexter, who is usually a fun-loving, kind boy who likes playing with his friends and sisters, won't want to play with others, antagonizes his siblings, and cannot play even simple games like tic-tac-toe because, as part of his OCD, he has to win.

Gavin said it's like Dr. Jekyll and Mr. Hyde. It's a full personality switch. Most recently, Dexter had a flare from August to around May.

"I told (the pediatrician), 'I haven't seen my son since August,'" Gavin said during a recent interview.

***

After Tanner was diagnosed at 8 years old, she was put on a round of antibiotics for about six months.

"We saw significant improvement," Lemon said. "It's actually hard to articulate just the difference that it made."

Now Tanner is a bright, precocious 10-year-old with long brown hair and rectangular glasses, who is constantly trailed by her 5-year-old sister and loves riding her bright blue scooter.

Her parents have evidence of the dramatic shift in Tanner's personality and behavior before and after she started antibiotics. Before the diagnosis, she suddenly started struggling in school and her handwriting grew sloppy. But after her improvement, her handwriting became neater and more organized.

School photos illustrate the difference, too. Before the diagnosis, a typical photo of Tanner showed an unhappy little girl with dark eyes, unsmiling, with her head tilted down. After her treatments, the photo shows her head up and a broad smile on her face.

"But it's not foolproof," Jill said. "We know that, literally every morning, it could come back. ... We constantly wonder: Are we free of this? Is she free of this? And the answer is no."

PANS flares can occur unexpectedly, and the triggers could change with the environment. One of the reasons it may have taken so long for her parents to recognize PANDAS in Tanner was because, soon after the illness that triggered the condition, she left school for summer vacation and she improved because she wasn't exposed to the same bacteria as usual.

The symptoms associated with PANS are caused by an underlying infection, bacteria or other pathogen that trigger an autoimmune inflammation. The antibodies created by the immune system then mistakenly attack the brain, causing the OCD, anxiety and tics associated with the condition.

Dr. Christine Seliskar with Midlothian-based Pediatric & Adolescent Health Partners - one of a handful of pediatricians in the Richmond area that treats PANS, though the number is growing - said some of her patients require intravenous immunoglobulin (known as IVIG) , a treatment administered through an IV that basically reins in the immune system by adding antibodies , or plasmapheresis, which, like dialysis, removes antibodies from the blood by cycling it through a machine.

The trouble is, both those treatments are prohibitively expensive. They can both cost as much as $10,000, and frequently parents must pay for it out of pocket.

Last year , Gavin and her family paid $13,000 out of pocket to treat 5-year-old Dexter, who has PANS, along with Gavin's 3-year-old daughter.

"It's not like we had $13,000 - that came out of our retirement account," Gavin said. "We are fortunate enough to have 401ks to pull from. Not everybody can."

Gavin's son had the IVIG treatment , but eventually his pediatrician discovered the strep was in his gut, so the $10,000 treatment did not ultimately help.

"Families are in complete and total chaos with this, and trying to figure out how to pay these things on top of it, it's just another burden for families," she said. "It's a huge barrier for care."

***

Tanner experienced a flare of her symptoms in mid-May. Her OCD spiked. When picking strawberries with her family, she became obsessed with the placement of her strawberries in her basket.

When she accidentally shattered a bowl, her mom came downstairs at 6 a.m. to find Tanner meticulously fitting together every piece of the bowl, as though it were a puzzle.

Tanner can easily, almost nonchalantly, talk about her symptoms before her treatment with her parents, explaining that she would follow them around their home because she was afraid they would leave, and describing her panic attacks.

"They were pretty much scary and confusing," Tanner said. "They would last maybe two days to one day. Sometimes even a week, maybe. One time, I was having an anxiety attack during a tornado warning. And I also was scared about tornado drills at school, that would freak me out."

The Lemons are now part of the PRAI group that Gavin runs, which is growing in numbers. It works with about 200 families from all over Virginia.

"Just last week, we had nine PANS moms come into the group," Gavin said during an interview this month. "Nine children lost their minds to insanity last week."

PRAI's effort is to raise awareness of the disorder and encourage states to take action, as well. Gavin brought the issue to Filler-Corn's attention and helped advocate for the legislation that created the advisory council, and PRAI is in the process of launching chapters in South Carolina and North Carolina.

Right now PRAI is also working to spread awareness among pediatricians so they can understand and treat PANS, as well as mental health providers, who may misdiagnose a child - with autism or bipolar disorder, in some cases.

Gavin's son was misdiagnosed with autism, but she noticed that it waxed and waned: One week he would look and act normal, and the next he would exhibit autistic symptoms. She said she changed pediatricians monthly to try and discover what was happening.

"I was told autism doesn't wax and wane, and it was probably in my head," she said.

With fewer pediatricians knowledgeable about PANS, more parents end up going to practices like Pediatric & Adolescent Health Partners, where Seliskar and her colleagues are overloaded with patients.

Stories like Gavin's are typical - parents often discover the condition before their pediatricians do, and sometimes have to fight to be believed.

But they do keep fighting, in some cases for years.

"It's funny, they say you don't understand love until you become a parent, and it's absolutely true," Seliskar said. "I think a lot of parents, they'll do anything for their child. And it drives them to really keep seeking until they get some help."

koconnor@timesdispatch.com(804) 649-6813Twitter: @katiedemeria