Family perseveres in fighting pediatric disorder
Onset of PANDAS is usually sudden, transforming a normal, healthy child today into an almost unrecognizable child the next day
Bonnie Markowitz does not like Feb. 2.
Twice on that date, several years apart, it was as if her son had vanished, even though he was still right there, next to her.
The first time was on Feb. 2, 2007, when Brandon, then 5½, had a typical strep throat infection, which was treated with antibiotics. But a day or two after he got sick, his personality seemed to shift overnight: Uncontrollable tantrums and extreme separation anxiety kicked in, which was completely at odds with the person he had been only days earlier.
Fortunately, Markowitz and her husband, Saul, were able to get a diagnosis almost immediately: their son had PANDAS. “Getting an immediate diagnosis is extremely rare. We were extremely fortunate to have had access to the right doctor at the right time,” said Markowitz.
The acronym stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection.
Many children get strep throat infections in childhood, but some kids have an overreaction to strep, which triggers the neuropsychiatric symptoms associated with PANDAS. Common symptoms include obsessive-compulsive disorder, personality changes, anxiety, tantrums, tics and other behavioral issues.
The common thread is that onset is typically sudden, transforming a perfectly normal, healthy child today into an almost unrecognizable child the next day.
“One thing that most PANDAS families have in common is that they can pretty much tell you the date of the onset; it is that dramatic, that out of the blue, that acute,” said Markowitz.
Brandon’s physical symptoms abated soon after two courses of antibiotics, though it took his neuropsychiatric symptoms about six weeks to disappear. And so life returned to normal.
But two years later to the day, on Feb. 2, 2009, the exact sequence of events occurred again. This time, the neuropsychiatric symptoms lasted a bit longer, perhaps eight weeks, until Brandon returned to about 85 to 90 percent baseline, with some lingering OCD.
Then in early February 2011, Brandon’s neuropsychiatric symptoms were exacerbated, with a physical illness to follow several days later, which was in reverse order of how it had presented previously.
“With each case, the length of PANDAS symptoms got longer and longer,” said Markowitz. Those symptoms included concentration and processing difficulties, OCD, anxiety, irritability and rages, among others. Markowitz would occasionally have to call Saul to come home from work to help. And often, after an episode of one to two hours would pass, Brandon was not even aware of what had happened.
For several years thereafter, Brandon suffered on and off bouts of unexplained illness, which propelled the family on a whirlwind journey around the country to see specialist after specialist. At last, in late 2013, doctors determined he had Lyme disease as well as the co-infections babesia and mycoplasma. This transformed his diagnosis from PANDAS to PANS — basically, the same thing as PANDAS but without an underlying strep infection.
If you haven’t heard of PANDAS/PANS, you’re not alone. Many doctors have not either. In fact, it wasn’t until the late 1990s that the disease was identified by Dr. Susan Swedo, who is a medical pioneer and steadfast advocate in the PANDAS/PANS community.
Despite Swedo’s outspokenness, the medical community has been slow to recognize PANDAS as a legitimate disorder. Some are even outright skeptical of its existence.
“The medical community in general is conservative in accepting changes, in that they want to be careful and wait for evidence-based medicine and wait for properly designed studies to come out before they jump on the bandwagon,” said Dr. Elizabeth Spaar, head of Spectrum Family Practice in Grove City and the region’s only PANDAS specialist, as well as one of Brandon’s physicians.
According to the PANDAS Network, which is the most comprehensive source of information on this disorder, PANDAS affects as many as 1 in 200 children, though misdiagnosis and under-diagnosis can skew those numbers. In fact, many specialists think that the number is much higher.
The age of onset ranges between about 3 to puberty; following puberty, children sometimes outgrow the condition, though some milder symptoms can remain. However, the disease is so newly identified that not much long-term research and follow-up exists; thus, no one truly knows if PANDAS can become a chronic condition into adulthood, because the disease is both misunderstood and under-researched.
In part because of parent advocates such as the Markowitzes, the disease gradually is becoming more and more recognized, with several PANDAS clinics cropping up in some major university hospitals.
And that is good news for Brandon and others like him.
“I do think that there is a shift occurring now. I am seeing increasing acceptance of the diagnosis of PANDAS and an increase in education about it,” said Spaar.
Treatment for the underlying strep infection is often a course of antibiotics, sometimes with the addition of steroids, but the neuropsychiatric symptoms are often managed with medications and/or behavioral therapies. Though the Markowitzes have declined psychiatric medications, they have enlisted the aid of therapists.
What seems to help alleviate symptoms in many children is IVIG: intravenous immunoglobulin, a pool of healthy donor plasma administered intravenously that helps to strengthen antibodies and the immune system overall.
“This is the problem in kids with PANDAS and PANS — their antibodies aren’t normal, aren’t typical, so rather than attacking the virus or infection, they attack the brain, resulting in brain inflammation and causing all of these symptoms,” said Markowitz.
“I would say that there’s been a good amount of research in the past couple of years in PANDAS clinics showing that most children with PANDAS will respond to things like antibiotics and anti-inflammatory medicines. The ones who do not respond, there is solid evidence that they respond to IVIG,” said Spaar, noting that the research is still in a young phase.
In fact, Brandon underwent IVIG in 2013 in Pittsburgh, but what ensued was a two-year fight with the insurance company to pay for the $100,000 treatment. The Markowitzes, who had in the past been quiet about Brandon’s diagnosis, took to social media, not only to shed light on their experiences, but to compel their insurance company to pay for Brandon’s IVIG, which it denied again and again, as it viewed the treatment as experimental.
“When we realized the only way we were able to fight the insurance company was going to be on social media, that drove the decision,” said Markowitz.
The Markowitzes won.
“You never start up with a PANDAS mom because PANDAS moms are always looking out for their kids. When a doctor says no, there is no such thing as ‘no’ to a PANDAS mom,” said Saul Markowitz.
A second treatment in Pittsburgh actually made him worse, which Brandon’s physicians believe was from a bad reaction to steroids at the onset of treatment.
Also, a patient cannot undergo IVIG with an active infection, so they had to work very hard to get the Lyme and its co-infections under control.
With the help of Spaar, the Markowitzes were able to get approval for his next three IVIG treatments within 36 hours of submitting pre-authorization forms to the insurance company.
“It was truly remarkable how quickly Dr. Spaar was able to get the pre-authorization, despite hurdles that the insurance company put her through,” said Markowitz.
“It was like a national holiday in our house,” said Saul Markowitz, smiling.
Before finding Spaar, they had gone through the insurance pre-authorization process with one of one of Brandon’s out-of-town doctors but he was unsuccessful in getting the necessary pre-authorization to allow Brandon to have IVIG. Markowitz said that this is unfortunately the case of so many PANDAS specialists, leaving so many waiting months or years on end to get treatment.
“Dr. Spaar is unique in her drive, passion, and expertise to get the job done with this matter,” added Markowitz.
Brandon was able to undergo the most recent IVIG treatment this past August, and they have noticed marked improvements; a second treatment is scheduled for November.
Today, the couple is not only vocal about PANDAS/PANS, but they are tireless advocates in the fight to help their son and other families who are struggling and confused about resources or where to turn for help. They also educate themselves about the latest research; Markowitz attends annual medical PANDAS conferences, and she also co-leads a monthly support group in Pittsburgh for over 20 families dealing with PANDAS/PANS.
And next week, a public informational session called Pancakes for PANDAS will be held to address the topic of PANDAS as a way to educate families as well as create awareness of this little known but increasingly common condition. Spearheaded by the Markowitzes, the event is scheduled for Thursday, Oct. 19. After an evening breakfast of pancakes and mimosas is served at Pamela’s at 5 p.m., the attendees are invited to the Jewish Community Center for a 7 p.m. showing of a documentary, “My Kid is Not Crazy,” followed by an hour-long panel discussion featuring the film’s director, Tim Sorel, and two PANDAS specialists, Dr. Allen Lewis of the Sancta Familia Center for Integrative Medicine in Columbus, and Brandon’s doctor, Dr. Elizabeth Spaar.
The documentary, released last May, is subtitled “A Search for Hope in the Face of Misdiagnosis” and tracks a half-dozen families from all over the country whose children had PANDAS.
With this event, the Markowitzes hope to create awareness and reach the medical and educational community as well as families dealing with the disease.
Through social media, they have been able to reach many folks touched by PANDAS. “I so desperately want to help them because we’ve been there and we know what it feels like when your child starts exhibiting the symptoms that are so uncharacteristic of the child, to guide them to the right specialist, and to help them help their children,” Bonnie Markowitz said.
Since 2011, Brandon’s illness became chronic; however, Markowitz said that he has since recovered from much of his symptoms, with some lingering OCD, anxiety and cognitive issues. She credits the IVIG with pulling him out of what she calls the deepest, darkest part of the illness.
“There are so many possible triggers; the complicated part is when your child starts to go into a flare, trying to pinpoint what exactly is the trigger, what is creating the flare, is mind-blowing; it could be anything,” said Markowitz.
Currently, Brandon’s triggers are the toxins in the environment, anything from dust in the air to new carpeting and exposure to germs and illness. In fact, Markowitz and husband Saul are currently remediating their Fox Chapel home to make it totally green, and therefore safe for Brandon.
In 2015, Brandon’s doctors helped the Markowitzes make the decision to remove him from the school environment primarily to limit his exposure to germs that were triggering symptoms. He is now in 10th grade and is achieving great success attending the cyber program through Fox Chapel Area School District.
Despite having lived with this disorder for the better part of a decade, Brandon, now 16, remains positive and upbeat as he approaches each new hurdle. “Self-advocacy is a true strength. He has also become an advocate not only for PANDAS, but for kids who struggle with other medical conditions and disabilities,” said Bonnie Markowitz.
Brandon regularly visits a friend who spends a lot of time in the hospital struggling with another autoimmune disorder, giving him pep talks with each visit.
“Brandon also participates regularly on a social media app which is frequented by other kids his age. Since he started participating a little more than a year ago, he has developed a following of more than 20,000 kids, with visits from hundreds on his daily broadcasts.
He has become the highlight of so many kids’ days, as many tune in for his positive words and a fun diversion from their current struggles such as bullying, family issues or their own illnesses or disabilities. Several of his social media contacts have also become friends who he sees regularly,” said Markowitz.
She said that prior to having to be removed from the school environment, he used to love to perform in musicals and plays, both at school and at the Jewish Community Center. Other interests are travel, tennis, basketball and hanging out with his friends, with a future goal of pursuing a career in hospitality/hotel management.
The Markowitzes credit each other, along with the help and support of family and others families in the same boat, in getting through the difficult times.
However, they’ve seen friends disappear, friends who couldn’t understand what was going on or why they would often have to cancel plans on a moment’s notice.
“It’s such a lonely place to be when there are people around you that don’t understand or believe you. What is so great about it now is we’re connecting with other people, so they don’t feel like they’re alone,” said Saul Markowitz.
But life has gone on. The couple is busy managing their business, Markowitz Communications, a public relations firm in the East Liberty.
“Everyone has their tsuris (worries),” said Saul Markowitz. “We all find a way to cope with it.”
He plays ice hockey once a week. And Bonnie Markowitz, a former kindergarten teacher, recently got her master’s degree in early childhood education after taking a hiatus to care for Brandon and advocate for PANDAS.
Saul calls his wife “the ultimate PANDAS mom; Brandon is very fortunate to have her. She dropped her life for him. She’s kept this family together. I give her all the credit in the world.”
Healthcare and education professionals may register for Pancakes for PANDAS at email@example.com, while the general public may register at firstname.lastname@example.org. The event is free, though donations are welcomed and will benefit PANDAS advocacy and support.
For additional information about PANDAS/PANS, visit pandasnetwork.org. pjc
Hilary Daninhirsch can be reached at email@example.com.