'Emotional upheaval': Prior Lake family battles for treatment, to raise awareness of rare disorder

Prior Lake American

The Barnes home in Prior Lake is hectic — two parents with full-time jobs, four children under the age of 13 with activities and sports to do, two dogs and one cat.

It’s only gotten more hectic since the oldest child, Parker, 12, was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, or PANDAS, in 2017.

Since the diagnosis, Parker’s parents Natalie and Brian Barnes have fought to get treatment for Parker and raise awareness of PANDAS, which is the subject of controversy in the medical field. The family hopes to push for legislation in Minnesota to demand insurance coverage for the disorder as well as open a center for children with PANDAS.

In the meantime, Parker needs to travel to Texas periodically for a specific therapy for the disorder, and there’s still the wants and needs of the three other children, Faith, Stetson and Greta. Brian Barnes runs as often as possible to deal with the stress.

Natalie Barnes said the family keeps on with faith, hope and a tremendous amount of support from the community of Prior Lake.

“It’s a challenge every day and trying to figure out how to work through it,” she said. “Our goal is to come out the other end and Parker will get better and we’ll continue to march on to help other kids, because no child deserves this.”

The onset of symptoms

In January 2017, Parker came down with strep throat, an infection caused by streptococcal bacteria. He’d already had his adenoid glands and tonsils removed as a result of multiple prior strep throat infections.

Parker was put on antibiotics but tested positive again for strep throat the next month. It was then, Natalie Barnes said, that Parker began to act differently.

“He started having these ‘mopeys,’ where he’d suddenly have an onset of sadness where it would come and go and there was no reason for it,” she said. “We were confused as to why he’d have this moodiness.”

The depression progressed, and Parker experienced an onset of social anxiety. He would watch children playing football across the street but wouldn’t join them as he once would have.

“He began to regress away from other peer groups, which was very unlike him,” Brian Barnes said. “Usually, if he has an opportunity to see somebody, he’s going to go see somebody. I thought, ‘Oh, that’s weird,’ but kids go through stages and get self-conscious about things.”

One afternoon, Barnes invited Parker to go to the pool for a swim and Parker declined. Later on, he got a text from his son saying he needed to come home immediately.

“He was bawling uncontrollably,” Barnes said. “It was like someone laying on a coffin, bawling — it was that kind of grief.”

Parker had an appointment with a psychologist, but it was six weeks out. In April 2017, Parker’s brother Stetson, now 9 years old, found Parker in the upstairs bathroom with a knife, threatening to stab himself.

Parker’s parents took him to the emergency room, where he was then transferred to an inpatient psychiatric hospital.

“We’re like, ‘We don’t get this, he’s not psychotic,’” Natalie Barnes said.

After an assessment, a psychiatrist said Parker might have PANDAS.

PANDAS

When someone contracts strep throat, the bacteria hides in the body by mimicking molecules naturally found there, according to the National Institute of Mental Health. The bacteria are eventually recognized as invaders by the immune system, which produces antibodies to fight them off.

The limited studies done on PANDAS suggest that the disorder develops after the immune system becomes unable to distinguish between the regular molecules and the mimicked molecules created by the bacteria. As a result, antibodies could begin to attack healthy tissue in the brain, causing psychiatric symptoms such as obsessive compulsive disorder, tics, anxiety and depression.

Parker was put on antibiotics but began hallucinating in May 2017. He also started having regression in his speech, bouts of extreme rage and seizure activity.

“We had him sleeping next to us every single night with an alarm on the door and with our shoes on in case he started running,” Natalie Barnes said. “It was like he was in a trance, he wouldn’t know where he was.”

Parker’s parents kept bringing him to various doctors, looking for effective treatment. But controversy in the medical field surrounding PANDAS and its definition led to roadblocks.

Pediatrician Dr. Susan Swedo identified PANDAS in 1998 while researching a different neurological disease, according to Parents Magazine. Since the disorder is recent and not yet well-researched, some doctors have dismissed the stories of PANDAS as “unreliable” and “anecdotal,” according to the magazine.

“You have to be looking and seeking PANDAS-friendly doctors ... so you can get what your child needs,” Natalie Barnes said. She and Brian Barnes joined social media sites for parents of children with PANDAS to research providers in the area.

In spring 2018, Natalie and Brian testified in front of the Minnesota House of Representatives on a bill mandating insurance coverage for children with PANDAS. The bill was vetoed by Gov. Mark Dayton as part of a larger omnibus bill.

Treatment and awareness

They took Parker to a neurologist in July 2017 who recommended Parker be put on intravenous immunoglobulin, or IVIG, treatment. Immunoglobulin is a part of blood plasma that contains antibodies and can be given to patients to strengthen the immune system, according to WebMD.

The treatment continued, but the disorder worsened. In September 2017, Parker was unable to write or talk. A video from the time shows Parker unreservedly sobbing.

“You’re assaulted on multiple fronts,” Brian Barnes said. “This is an emotional upheaval. It’s a complete logistical upheaval. It’s a political upheaval, because we found ourselves entangled in the mess that PANDAS is. There’s multiple things pulling on you at all times, so it can be very stressful.”

Steroids were added to the immunoglobulin treatment. In December 2017, the Barnes family began to see improvements. Parker went ice skating. He started mouthing words. In January, he started speaking again.

“We were excited because we felt we were gaining some ground,” Natalie Barnes said.

In February, several members of the household came down with the flu and Parker lost three teeth. Though separated from the others, Parker began to regress again. In March, his mother flew to New York for a conference on post-infectious autoimmune diseases of the brain to get in contact with doctors who could help Parker.

“When I was there, my whole point was not to enjoy and get information. The point was, who are the doctors that are treating these kids and how do I get in their back pocket,” she said. “You got to do whatever it takes. You’re in a battle for his life.”

At the conference, Natalie met Dr. Souhel Najjar, who became well-known outside of the medical field after diagnosing journalist Susannah Cahalan with a type of encephalitis. Cahalan had been misdiagnosed with schizoaffective disorder, which can cause some of the same problems as schizophrenia.

Najjar, and several other professionals, recommended that Parker undergo plasmapheresis, a treatment where harmful antibodies are removed from the blood in a process similar to dialysis, according to the National Kidney Foundation website.

Parker’s parents began to see more doctors in an attempt to arrange plasmapheresis treatment and a prescription for Rituxan, a medication used to treat autoimmune diseases and cancer.

The couple was able to arrange plasmapheresis treatment for Parker at Children’s Minnesota from Oct. 10-24 and Rituxan therapy at the Texas Children’s Hospital. At the end of October, Parker and his mother flew to Texas to begin the treatment.

Natalie Barnes said the battle to find providers who recognize PANDAS and getting treatment covered by insurance has been “devastating.”

“The big thing is getting awareness out there that one in 200 kids could have PANDAS,” she said, a statistic from the PANDAS Network advocacy group. “Ninety-eight percent of those are going to be in the mild category. Moderate to severe are left stranded in the medical system.”

Barnes said she has seen gains from the recent treatment, but that it could be six to 18 months to know what the effects are. Parker will need to be on antibiotics until he is 25 years old and, after treatment, get checked periodically to ensure the disorder doesn’t return.

“In the end, we still have our kid, and other families are challenged by much more,” Natalie said. “We’re thankful for that.”