Tonya Hill Schmidt and Michelle Berg have a few things in common. Both live in Waunakee, and both have children in the school district here.
But what draws them closer together is their journey in discovering the cause of sudden, dramatic changes to their sons’ personalities and lives.
Both of their sons were diagnosed with PANDAS – Pediatric Autoimmune Neuropsychotic Disorder Associated with Streptococcal Bacteria.
Both became alarmed when suddenly, their sons began to display bizarre behaviors and to act out. And both hope other parents can avoid their own frightening and frustrating search for the root of their sons’ problems.
Finding the cause of Sawyer’s symptoms took nearly seven years for Hill Schmidt and her family. Sawyer was just 3 when he became impulsive, angry and anxious, especially about transitions.
“We couldn’t take him to places. We didn’t know when he would have a meltdown,” Hill Schmidt said.
Initially, doctors said he was suffering from psychosis, and placed him on a number of psychotropic drugs, even lithium, Hill Schmidt said.
Those require blood tests, which also sent Sawyer into fits, requiring nurses to hold him down, she said.
Sawyer was in the first grade when the Schmidt family moved to Waunakee. His reaction to the transition was so violent, the family hospitalized him for eight days, Hill Schmidt said.
“He had completely destroyed a special ed room. The police liaison said he had never seen such anger and energy put forward,” Hill-Schmidt said.
Meanwhile, the family spent much of their time driving Sawyer to doctors appointments and for occupational therapy.
“We did find his meds helped him be a little better. At least he could function,” Hill Schmidt said.
But his behavior began to decline again in the third grade, she said.
At that point, the family changed insurance companies, and a new psychiatrist suggested a different blood test, just to rule out the possibility of PANDAS.
“The doctor called at 7 at night and said your son has a raging staph infection,” Hill Schmidt said.
Once on antibiotics, within two to three weeks, the violent behavior and anxiety subsided.
“We had a totally different son on our hands,” Hill Schmidt said.
For the first time in over six years, they could go out together as a family. His grades and even handwriting have since improved. And for the first time, he is learning to compete in a team sport, activities other families take for granted, Hill Schmidt added.
Berg’s family urged her to have her son tested right after he began showing symptoms. Peter was 4 when Berg noticed odd behavior.
It was nearly two years ago on Thanksgiving day when Peter first acted out. Berg had heard that some of the kids in his 4k class had strep, but he didn’t seem to have symptoms.
She noticed instead that he exhibited some signs of obsessive compulsive behaviors, arranging his books just so.
And then, when the family was watching the Thanksgiving Day parade on television he “went ballistic,” Berg said.
The family turned it off, but even in his room, Peter claimed it was still too loud, apparently suffering from auditory hallucinations, and continued to carry on.
“Finally, he came out of it,” Berg said.
Still, his sensory issues persisted. He couldn’t stand to have a seatbelt on and his clothing irritated him.
The next day, Berg noticed a flat rash on his stomach.
“I still thought he had something else,” she said.
But her sister-in-law, who works at Rogers Memorial Hospital in Waukesha, insisted he be tested for strep. Sure enough, the test came back positive.
The family was referred to a specialist in the Waukesha area, and Peter began a long A treatment of antibiotics.
And still, bouts with strep return, along with some of the behaviors.
“They’re very sweet kids,” Berg said. “But when he’s in his funk and bad mood, he has tirades and rage. They’re so obsessed over something and it’s so sad,” she said.
Now both Berg and Hill Schmidt know to watch for the behaviors, and when they occur, their sons are tested for strep.
Berg and Hill Schmidt said they also have concerns about the ongoing use of antibiotics, but Hill Schmidt said she tries not to worry about the long-term effects.
At some point, their children may not be exposed to strep as often and may not need the antibiotics, they said.
They do wish that school officials would alert parents of strep outbreaks.
Both have found a resource in the PANDAS Network, which offers a fact sheet about the disorder.
PANDAS or PANS – Pediatric Acute Neuropsychotic Syndrome – affects about 1 child in 200. The symptoms vary, but can present themselves as obsessive compulsive disorder or restricted food intake that can not been explained by a known neurologic or medical disorder. Other symptoms include anxiety, emotional liability or depression, aggression, behavioral regression, deterioration in school performance, sensory or motor abnormalities and sleep disturbances.
Dr. Greg Brown of the Serenity Health Care Center in Waukesha has focused some of his practice on autism spectrum disorders and also includes chronic infections diseases such as Lyme Disease and PANDAS. He will be speaking at the Pinney Library, 204 Cottage Grove Road, Madison, at 2:30 p.m. Nov. 21 to the Lyme Support Group about PANDAS.
For more information about PANDAS or PANS visit pandasnetwork.com.