Henry Riesner was 3 years old when his parents noticed something was off.
He never would get a fever or complain of any sort of pain, but his behavior would “just become wild,” said Katie Riesner, his mother.
Henry would periodically become aggressive, scream, would sometimes make loud animal noises, Riesner said.
At times, he would be so anxious that couldn’t sleep in his own bed and would wake his younger brother out of fear that his brother was going to die.
The Riesners began noticing a pattern.
“Whenever he would act up, we would take him to the doctor and sure enough he would have strep throat,” Riesner said.
She said Henry’s pediatrician saw the pattern, too, and when Henry was about 5 years old, the doctor said his symptoms seemed like PANDAS, a term used to describe pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. They were able to get Henry to a specialist who confirmed the diagnosis.
As Riesner would soon learn, the diagnosis proves expensive and can lead families to spend tens of thousands of dollars on their children, combating infection and treating psychological symptoms with medication and therapy.
Already, the Riesners have spent in the thousands treating Henry, who is now 6. He sees a cognitive behavioral therapist, takes medication to treat ADHD-like symptoms and tics, prophylactic antibiotics and an increased dose during strep flare-ups. He’s also had his tonsils removed because of the high rate of strep infections.
Henry has been able to remain in public school, where he is now in first grade, though many with PANDAS have to be home-schooled.
“We are one of the exceptions; we are a success story,” Riesner said. “And we’re not out of the thick of it. We caught it early, we have good insurance.”
There is no mandate that insurance companies cover the cost of treating PANDAS and PANS (pediatric acute-onset neuropsychiatric syndrome) in most of the country.
PANDAS and PANS
The disorder was first described in the early 1990s by a group of physicians at the National Institute of Mental Health, when investigators observed children with “unusually abrupt” onset of symptoms connected to obsessive-compulsive disorder (OCD).
It was discovered that the symptoms come from an autoimmune response in a child’s body, where strep bacteria trick the body’s immune system into attacking the brain, causing inflammation and a variety of neuropsychiatric symptoms, ranging from OCD and anxiety to hypersensitivity and physical tics to developmental regression.
Today, the nonprofit PANDAS Network estimates that as many as one in every 200 children may have the condition, but other bodies, including the NIMH, do not have estimates on its prevalence.
“[Patients] don’t all have all the symptoms. It’s a little hard for people to believe in this, because two different kids can have different manifestations of the same disease,” said Dr. Susan Schulman, a pediatrician in New York City who specializes in treating PANDAS and PANS.
“It’s so dramatic and [it can be] so disturbing. Lives just come to a halt. Parents can’t function, a class can’t function, siblings can’t function,” she said.
The symptoms come on because the brain is experiencing inflammation, Schulman said. Treatment typically begins with antibiotics, to treat the underlying infection, but can also include psychiatric medication to treat the neurological symptoms like OCD, aggression or anxiety.
Early diagnosis and treatment are key, Schulman said. Patients tend to “outgrow” PANDAS and PANS after puberty. “The prognosis is good,” said Schulman, who has been treating PANDAS and PANS patients for 20 years.
In more severe cases, patients may require intravenous immunoglobulin therapy, or IVIG, to further reduce inflammation in the body and help treat symptoms. Schulman said she has treated more than 200 patients with IVIG and has seen success rates of about 80 percent in significantly reducing symptoms after 6-12 months of treatment.
IVIG is “very, very expensive,” Schulman said; a treatment typically costs about $1,000 for every 10 pounds of body weight.
While the treatment has been shown to be effective, it has not been confirmed by a double-blind clinical study, so it is considered an experimental treatment. That means insurance companies do not have to cover the cost, Schulman said.
Fighting in Maryland
There is no federal mandate that insurance companies cover PANDAS/PANS treatment, though two states — Delaware and Illinois — do require at least some plans to pay for treatment. There is pending legislation in dozens of other states, including Oregon, Ohio, Texas and Massachusetts.
Riesner was incensed when she learned last summer that Delaware has a mandate but Maryland does not.
“Parents should not have to choose between paying bills or getting their kids the care they need,” Riesner said.
She contacted state Del. Charles Sydnor III, a Democrat who represents her neighborhood in Catonsville, and worked with other families of children with PANDAS in Maryland to help draft a bill.
Already, the bill has been discussed at a House of Delegates Health and Government Operations Committee hearing. In a letter to the committee, Maryland Department of Health Secretary Robert Neall said Maryland Medicaid covers treatment for PANDAS and PANS, but not for experimental IVIG.
Sydnor said he expects the Insurance and Pharmaceuticals Subcommittee to vote on the bill the week of Feb. 25.
“The legislators that I’ve talked to, they seem supportive,” Sydnor said, though he was not sure if the bill would ultimately pass during this year’s 90-day legislative session. If it doesn’t pass this year, Sydnor said he would “absolutely” take it up again in 2020.
Sydnor’s legislation does not mandate that all insurance companies in Maryland cover the treatment. However, other insurers may feel pressured to follow suit.
In an email, Shareese Churchill, Gov. Larry Hogan’s press secretary, said the issue was “important” and the administration was “closely monitoring” the legislation. She declined to say directly whether Hogan would support the bill.
Riesner, who has also co-authored an op-ed in the Capital Gazette, said she believes legislators listened to her when she testified in Annapolis. But, she said, she feels like she’s in a “David and Goliath” scenario, taking a group of parents into a fight against insurance companies.
Riesner said she doesn’t like the word “lobbying,” though her husband, Matthew Riesner, calls her efforts “lobbying for all the right reasons.”
“We're doing the best we can. We're fighting for our kids, so we're fighting our hardest, but it's an uphill battle,” she said.
It’s around 6 p.m. on Valentine’s Day, and Henry comes rushing in the door of the Riesner house on Ingleside Avenue in Catonsville. Clark, his 4-year-old brother, is close behind.
“Mommy, I love you!” Henry yells. When Riesner says she loves him more, he’s quick to say that no, he loves her more.
But Henry’s good mood doesn’t last. Minutes later, he’s yelling and insisting that he has to build a LEGO set that belongs to Clark. Clark and Henry got identical LEGO sets for Valentine’s Day, and Henry built his already.
Riesner tells Henry, no, he can’t build the LEGO set because his brother said no.
“Mom, but I want to build it. Mommy, I wanted to build this LEGO set. I can’t stop. I have to keep building,” Henry says.
Riesner begins counting, and tells Henry that he will get a timeout.
“How dare you! Stop it with your lying numbers!” Henry shouts. Riesner reminds Henry that he’s not allowed to shout at his parents and physically lifts him upstairs for a timeout.
“It's very challenging to stay calm and do stuff that the cognitive behavioral therapist taught us,” Riesner said. She explains that his medication from the morning is probably wearing off, and that Henry has spent all day focusing on behaving.
“A lot of times, he just crumbles.”
A few minutes pass, Henry calms down, and he is allowed back downstairs. He and his mom take apart the LEGO set that he built earlier in the day so he can put it back together, helping to solve the problem from earlier.
By now, he has returned to his sweet, loving self, Riesner said. Henry explains that he made a bunch of Valentine’s Day cards at his public elementary school in Catonsville and wants to mail them to his family. Valentine’s Day, he says, is “about the people you love.”
Riesner said her family’s medical expenses in January totaled around $500, and that’s with insurance that helps pay for the PANDAS treatment. But the doctor Henry has been seeing is moving, and Riesner so far has been unable to find another physician who will take their insurance and treat his condition.
“It's terrifying. He had his last appointment with his doctor today, and I was bawling,” she said. “I'm so afraid he’s going to backslide.”
And that’s why she wrote the op-ed, that’s why she contacted Sydnor, and that’s why she testified in Annapolis. Riesner said parents in Maryland, who live near some of the best hospitals in the country, should all be able to afford to treat their children.
“Our kids need this,” she said. “This is not something I would normally get involved with, but this is my kid. And he needs it.”