ENID, Okla. — The families of Ryker Sutherland and Jett Hartling have long had a lot in common. Both boys now are 11 years old and sixth-graders at Waller Middle School. Both have been active boys, and both enjoy baseball.
But over the last two years, the families have been drawn closer together by something else they now have in common: their sons’ diagnoses with two related autoimmune diseases known as PANDAS and PANS.
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) may be diagnosed when a child suddenly develops obsessive-compulsive disorder (OCD) and/or tics, following a streptococcal (strep) infection such as strep throat or scarlet fever, according to the National Institute of Mental Health (NIMH).
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is a newer term related to PANDAS, according to NIMH, but includes all cases of acute onset OCD, not just those associated with strep infections.
If you’ve never heard of PANDAS or PANS, said Jamie Sutherland, Ryker’s mom, you’re not alone.
“We did not know anything about this before his diagnosis,” Jamie said, “and that’s probably the case for most parents.”
She had no knowledge of the autoimmune diseases until October 2016, when a bout of illness gave all five of her children a strep throat infection.
All five recovered, but soon after Ryker began undergoing behavioral changes.
“Within the following week, Ryker woke up one day and had full-blown motor tics and vocal tics — just out of the blue,” Jamie said.
Ryker also began exhibiting uncharacteristic anger, fear, anxiety and OCD.
The OCD became so severe, Jamie said, that Ryker felt compelled to touch his hand to a hot frying pan on the stove.
On her first trip to a pediatrician, Jamie said she was told Ryker’s behavioral changes weren’t “out of the normal” and “kids develop tics.” She was not convinced.
“All these symptoms started popping out,” she said. “Individually they might have made sense, but all together they didn’t make any sense.”
The tics, OCD and anxiety became debilitating for Ryker, Jamie said. The tics kept him from eating at school. And, when he got home, the anxiety-induced stress of being at school would come out in strong, emotional outbursts.
“He would keep it together at school,” Jamie said, “but when he would get home he would just melt down and lose it.”
Jamie started researching PANDAS and PANS, but three successive doctors declined to consider the disease and continued recommending psychotropic drugs to treat his OCD and anxiety.
While PANDAS has been recognized by NIMH since 1998, medical journals and doctors remain divided over whether PANDAS, and the later subset of PANS, are distinct diseases and whether children showing sudden onset of OCD and tics should be tested and treated for infection or treated with the more-common treatment for OCD — typically cognitive-behavioral therapy and antidepressants.
Jamie said it was stressful for her as she worked to find a diagnosis for Ryker’s condition.
“The first year was rocky because we didn’t know what we were dealing with,” Jamie said. “Trying to research it was just overwhelming. But, we finally found a doctor who was willing to listen to me and do some tests.”
After six months of doctors’ visits, Jamie said Ryker was diagnosed with PANS and put on a treatment regimen of antibiotics and a strict diet to reduce inflammation that drives the OCD and behavioral changes.
While Jamie was starting Ryker on treatment for PANS, Kelly and Drew Hartling were just starting down the same path with their son, Jett.
Last October, Jett became sick with strep. Drew said the illness lingered, and Jett missed a month of school.
The Hartlings said they didn’t notice any mental changes in Jett at first, but he continued to miss school and frequently he couldn’t keep food down.
Drew said doctors at University of Oklahoma Medical Center in Oklahoma City “ran every test they could think of,” but Jett’s condition remained a mystery.
When it came time to return to school after Christmas break, Drew said Jett’s mental and emotional changes became quickly apparent.
“It all hit in January when he went back to school,” Drew said. “He got up that morning and just had an absolute mental breakdown. This is a kid who would lead the charge, and he just absolutely wouldn’t step outside the door.”
Jett stopped eating and lost 26 pounds. And his anxiety continued to worsen.
“He didn’t know what was wrong with him,” Drew said, “and he just kept saying ‘Why am I always scared?'”
Kelly said Jett was gripped by fears he would die or his family members would die if they left the house.
“We couldn’t figure out if something happened or if someone got ahold of him,” Kelly said, “and it wasn’t until we did more research that we found out what looked like a psychological issue wasn’t — it’s an infection.”
Like the Sutherlands, the Hartlings struggled to find a diagnosis for their son’s condition.
“We saw every kind of doctor and had tons of blood work done,” Kelly said.
But, she said, even doctors who recognized PANDAS as a diagnosis did not want to treat it.
“They all wanted to prescribe antidepressants or put him in a mental institution,” she said. “Those were the choices.”
The Hartlings saw seven doctors with Jett before they found one who would treat his condition as PANDAS and not just a psychological issue.
Antibiotics were followed by blood treatment with intravenous immunoglobulin (IVIG), a blood product that requires between 1,000 and 15,000 donors per batch.
After six months and seven doctors, Drew said the effects of the IVIG treatment were almost immediate — “within 20 minutes Jett’s OCD and tics went away and he started eating immediately.”
Since then, strict monitoring of Jett’s diet has allowed him to come off the antibiotics. Drew said Jett isn’t back to where he was before PANDAS, but he has been able to resume most of his normal activities.
But any divergence from Jett’s homeopathic diet can cause a flare-up of the inflammation that drives PANDAS symptoms.
Drew said the importance of sticking to that diet became apparent at a baseball tournament, when Jett ate a hot dog from the concession stand.
In less than an hour, Jett’s old symptoms resurfaced in anger and aggression, with loud cursing directed at the umpire and other players.
“It was almost like he was ready to fight everyone on that field,” Drew said, “to the point I had to go out and physically carry him off the field — and you look in his eyes, and he’s not even there.”
To avoid flare-ups like that, Kelly said Jett likely will have to monitor his diet for the rest of his life.
“There’s things that have happened to his brain that can’t be fixed,” Kelly said. “Even though we’re so thankful for the stage he’s in, and the improvement, it’s still not the kid he was. You grieve for the loss of the child he was.”
Ryker also is back to most of his normal activities, but has had to remain on antibiotics to keep his PANS in check.
“He is not completely healed, but he is able to function, go to school and maintain a somewhat normal childhood,” Jamie said. “The good days outweigh the bad now.”
As both families continue to adjust to life with PANDAS and PANS, they want other families to know about the autoimmune diseases, in hopes more children can be diagnosed and treated earlier.
Drew worries many families won’t get to that diagnosis, because they lack the resources to move from doctor to doctor until they find one that will treat PANDAS.
“How many of the families are going to spend the time to do all of the research and go from doctor to doctor to treat this?” he said. “A lot of them are just going to fall into that crisis mode of ‘let’s just get this treated.'”
He said parents have to be willing to “be the advocate for your child.”
“Don’t let anyone else determine your child’s health or your child’s health goals,” Drew said. “This is going to be a continuous process, and you need to dig into the trenches and be ready to do battle.”
Kelly and Jamie said parents need to be willing to take charge of their children’s medical care.
“It’s OK to tell your doctor ‘No’ and say you want that second or third opinion until you find someone who is willing to listen,” Kelly said.
“It’s not about finding a doctor that will give you what you want,” Jamie added. “It’s about finding a doctor who is willing to listen.”
For information on PANS and PANDAS, go to the NIMH website at tinyurl.com/PANS-PANDAS. Concerned parents also can contact Jamie Sutherland (Barber) and Kelly Callicoat Hartling at their respective Facebook pages.
Medical community remains split over PANDAS and PANS
PANDAS was first reported in the 1980s by Dr. Susan Swedo, chief of the Pediatrics and Developmental Neuroscience Branch at the National Institute of Mental Health (NIMH), after she discovered a link between abrupt-onset obsessive-compulsive disorder (OCD) and streptococcus, according to the American Academy of Pediatrics (AAP).
PANDAS primarily affects children younger than 12 because they are less likely to have streptococcal antibodies, according to AAP. The disease was recognized by NIMH in 1998 after a study by Swedo that started as an investigation into ties between rheumatic fever and OCD.
PANS is a newer term related to PANDAS, according to NIMH, but includes all cases of acute onset OCD, not just those associated with strep infections.
Swedo estimates PANS disorder impacts about one percent of elementary school-aged children and likely is under-diagnosed, according to a 2017 AAP article.
But, while NIMH recognizes PANDAS as a condition “causing OCD, tics, and … other neuropsychiatric symptoms,” acceptance of PANDAS in the medical community has been slow coming.
“It’s just like any new thing — it’s hard to get people to accept it,” said Madeleine Cunningham, director of the immunology training program at University of Oklahoma Health Sciences Center. “Any new thing, there’s going to be resistance to getting people to diagnose that.”
Cunningham worked on Swedo’s team subsequent to the initial diagnosis of PANDAS by NIMH in 1998, and since has been an advocate for diagnosis and treatment of the disease. She co-founded a company, Moleculara Labs, that filed a patent last year for a test to diagnose PANDAS.
Cunningham said resistance to diagnosing and treating PANDAS has been prevalent since 1998.
“The infectious disease community became adamant — they weren’t so sure they wanted to believe it was caused by strep,” Cunningham said. “There’s a lot of arguing … about whether strep caused it or whether the strep is just coincidental, because strep is so prevalent among school children.”
That division among researchers and infectious disease experts has led a majority of the nation’s primary care doctors to resist diagnosing PANDAS, Cunningham said.
There is a network of physicians across the country that specialize in PANDAS and PANS, including programs at Massachusetts General Hospital in Boston, Mass., the University of South Florida and the Lucile Packard Children’s Hospital at Stanford University.
But, Cunningham said, “most pediatricians decided they didn’t want to see it or treat it.”
Cunningham said the reluctance to diagnosing PANDAS and PANS can be crucial, since the OCD caused by the diseases can cause rage, hallucinations, anorexia and suicide.
“It’s really a terrible mental illness,” she said, “and our goal is just trying to get people to understand it.”
Facing disagreement between doctors, parents of children with sudden-onset OCD and tics might turn to scholarly medical journals for advice and information. But, the divisions between researchers and doctors are reflected there as well.
The Journal of Child and Adolescent Psychopharmacology (JCAP) published a 2014 article outlining effects of PANS, including “extreme compulsions (licking shoes, barking), motor and phonic tics (whooping, wringing hands), behavioral regression, and terrifying episodes of extreme anxiety or aggression.”
In 2017, that same journal published guidelines for treating PANS and PANDAS, including psychotropic medication and cognitive behavioral therapy to treat symptoms and anti-inflammatory and immune system treatments for the underlying causes.
But, if parents pick up the Journal of Pediatrics, they may find the phrase “so-called” in front of references to PANDAS. While the AAP, NIMH and JCAP are likely to publish the work of Cunningham and Swedo, the Journal of Pediatrics is more likely to publish the work of Dr. Donald Gilbert — one of the leading critics of the PANS and PANDAS diagnoses.
Gilbert, a neurologist at Cincinnati Children’s Hospital Medical Center, told The Wall Street Journal in 2015 children with sudden-onset OCD, coming after a strep infection or not, should be treated with standard OCD therapies, not the treatment guidelines advocated by PANDAS doctors.
In an August article in The Journal of Pediatrics, Gilbert cited “the lack of data supporting the suppression of symptoms or prevention of recurrences with antibiotic therapy” for PANDAS patients” and questioned “whether there is a meaningful distinction between PANDAS and tic disorders.”
With disagreements over PANDAS and PANS persisting in the medical community, Cunningham said parents need to be proactive about their children’s medical treatment.
If parents suspect PANDAS or PANS, and aren’t receiving answers or feel their doctor is unreceptive, Cunningham said it’s always best to seek a second opinion, and either diagnose or rule out the disease.
“They need to go to another doctor who would actually treat PANDAS,” Cunningham said, “and they need to get a confirmation, one way or another.”