6-year-old battling disorder that begins after strep throat

(Cynthia Jaeger (custom credit))
Updated: Oct. 23, 2018 at 5:52 PM EDT
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RICHMOND, VA (WWBT) - A 6-year-old girl from Mechanicsville is battling a fairly unknown disorder called PANDAS or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection.

The National Institute of Mental Health classifies PANDAS as an autoimmune and neuropsychiatric disorder that can occur when a child’s strep throat triggers an onset of mental health and other medical conditions.

For Zoey Jaeger, according to her mom Cynthia Jaeger, it started in August 2017 when the 6-year-old contracted strep throat and never fully recovered.

“Basically her digestive system shut down, she ended up getting an IV, she was dehydrated and on an all liquid diet and never recovered from that,” Cynthia Jaeger said.

Zoey’s symptoms progressed and eventually, Jaeger said Zoey stopped walking, eating and even sleeping. She started experiencing sensory issues, anxiety and even panic. She also continued to get strep throat 16 times, even after getting her tonsils taken out.

“She’s been on antibiotics, steroids, hospitalized, psychiatric medications, Zoloft for OCD,” Jaeger said. “At one point she was afraid her teeth were going to fall out when she was eating corn for dinner. She was going over every piece of corn, thinking it was contaminated."

Zoey is also on a medication to increase her appetite and on sleep medication.

“She is on so many medications, none of them have really worked,” Jaeger said. “She deteriorated and hasn’t been the same child since. I started researching behavioral problems with strep throat and that’s when PANDAS came up.”

According to the National Institute of Mental Health, PANDAS exists in a subset of children who experience rapid onset mental and emotional problems after contracting a strep infection.

NIMH said the disorder is cause by "the strep bacteria are very ancient organisms that survive in the human host by hiding from the immune system as long as possible. It hides itself by putting molecules on its cell wall so that it looks nearly identical to molecules found on the child’s heart, joints, skin, and brain tissues. This hiding is called “molecular mimicry” and allows the strep bacteria to evade detection for a long time.

However, the molecules on the strep bacteria are eventually recognized as foreign to the body and the child’s immune system reacts to them by producing antibodies. Because of the molecular mimicry by the bacteria, the immune system reacts not only to the strep molecules, but also to the human host molecules that were mimicked; antibodies system “attack” the mimicked molecules in the child’s own tissues.

Studies at the NIMH and elsewhere have shown that some cross-reactive “anti-brain” antibodies target the brain - causing OCD, tics, and the other neuropsychiatric symptoms of PANDAS."

But even so, PANDAS is controversial in the medical field as many doctors don’t believe it’s a real disorder.

Tracy McNeish, a pediatrician in Richmond isn’t one of them but she explains why it may be controversial and a lot has to do with the length of time antibiotics may be prescribed for this disorder.

“It doesn’t fit with the way we usually think of how we prescribe antibiotics,” McNeish said. “We’re not supposed to give antibiotics unless we know exactly what we’re treating. A lot of symptoms that are described as symptoms are kind of normal in a lot of kids... so a lot of us are born with anxiety tendencies, simple tics are considered a normal part in kids, separation anxiety... so that makes it tricky when doctors don’t want to do any harm."

McNeish also said doctors need to truly listen to the families they are treating.

“To me, the crux of it I guess is, if a child wakes up one day with new on set neuropsychiatric symptoms - then it’s probably pretty important to listen to those families,” McNeish said.

Jaeger said most doctors view the symptoms individually and not part of a larger problem.

“I took her to a neurologist, I took her to see an immunologist at VCU, her pediatrician all said this was a psychiatric issue,” Jaeger said.

Which is why doctors continued to prescribe various medications for anxiety, appetite and sleeplessness.

The family is thankful a group of specialists finally listened to them after months and months of back and forth with doctors and are helping them on a path to eliminate PANDAS. But Zoey is not out of the woods yet.

“She is on so many medications, none of them have really worked. Right now we’re just holding tight and the next step is this IVIG treatment or Intravenous Immunoglobulin Therapy, which is basically flooding her body with donor antibodies.”

Zoey’s first treatment is on Monday.

According to the PANDAS Network, the disorder impacts 1 in 200 children. PANDAS is a subset of PANS, which is described by NIMH as “a newer term used to describe the larger class of acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of acute onset OCD, not just those associated with streptococcal infections.”

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