One mother is working to raise awareness after her child was diagnosed with PANDAS, a controversial autoimmune disorder that may have been triggered by a reoccurring strep infection.
Katie Kenoe was celebrating her oldest son’s birthday at a farm with rides and festivities, when her younger son started acting out of the ordinary.
“Nate refused to take his socks off at the jump house, which is typically his favorite activity. He cried and cried saying, ‘There’s rocks in my feet. I can’t stand it. It doesn’t feel good. I don’t want to go on rides,'” Kenoe told Healthline.
What originally seemed like a fleeting temper tantrum from her 4-year-old turned into much more.
“We had to carry Nate the rest of the day. It was like he had regressed years,” Kenoe said.
In the days following, Nate began to have “cold shoulders” throughout the day, urinated multiple times hourly, had various tics, vomited at the site of food, and banged his head when he became frustrated.
Nate’s behavior was the beginning of sensory disturbances and physical changes that eventually lead his parents to visit his pediatrician in November 2018.
“Our happy-go-lucky, go-with-the-flow wild child, vanished out of thin air. He was always the first one to play in the dirt, and seeing him suddenly refuse to go to the park with his buddies about broke my heart,” Kenoe said.
After telling the pediatrician all of Nate’s symptoms, he diagnosed him with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection (PANDAS), a disorder triggered by untreated strep infection.
As a pediatric nurse, Kenoe had never heard of PANDAS.
“I’ll never forget the doctor’s reaction. It just clicked to him that this is what Nate was going through,” she said.
The pediatrician diagnosed Nate based on his symptoms and the fact that he had tested positive five times for strep throat in the 8 months leading up to his behavior changes. He was diagnosed with impetigo in November of 2017, and then for 8 months after that, strep manifested in different ways.
“First, it was a scabbed spot on his chin that was treated with cream. But then a month later, it was bigger. Then it was gone for a couple of months,” said Kenoe. “Looking back, I realized things started to manifest earlier. He had bad breath and then another time he had a spot on his butt, but he never said he had a sore throat. Eventually I noticed he didn’t develop typical strep symptoms.”
Each time she brought him to the doctor with a new symptom, Nate tested positive for strep and was prescribed antibiotics. His penicillin allergy meant he received a different, second-line course of antibiotic treatment. However, the last antibiotic Nate received seemed to clear his symptoms for a month until his behavior changed.
“Typically, it’s a very sudden onset, and two-thirds of patients are boys,” Dr. Susan Swedo, former chief of the section on behavioral pediatrics at the National Institute of Mental Health (NIMH), told Healthline. “Many times, parents will say, ‘He woke up a different child’ or ‘Someone stole my sweet little boy.'”
In the 1990s, Swedo and her NIMH team were the first to identify a subtype of pediatric obsessive compulsive disorder (OCD), in which symptoms are triggered by cross-reactive antibodies produced in response to infections with group A beta-hemolytic streptococci (GAS). They called this subgroup PANDAS.
Swedo explains that PANDAS is similar to rheumatic fever, a disease that can result from inadequately treated strep throat or scarlet fever.
Rheumatic fever can cause rheumatic heart disease, a condition which causes permanent damage to heart valves.
“From the pre-antibiotic days, we know that if strep lingered in the throat for more than a few days, the body produced antibodies against that strep,” said Swedo.
She says strep can open the blood-brain barrier, allowing abnormal immune cells to traffic along the nerve at the base of the brain.
“When that happens, they set up an independent neuro inflammation that even when you treat the strep infection in the body, the brain continues to have difficulties,” she said. “In the case of strep, it’s actually a post-infectious immune response. You really have a temporary loss of tolerance that was triggered by these abnormal antibodies.”
After years of research, Swedo determined that a PANDAS diagnosis should only include children who are pre-pubertal because strep is most common among children and preteens.
“We were looking for a clean research group that we could find abnormalities in the brain. It turned out to be bigger than we thought and we got calls from parents from whose children had abrupt onset of OCD and eating restrictions and OCD plus terrible behavioral problems,” Swedo said. “As controversy starting swirling around whether or not strep could do this, we met and said let’s step back and try to help clinicians understand how to help these families as quickly as possible.”
Despite 30 years of PANDAS research by Swedo and other scholars, many physicians are skeptical of the disorder, and others believe more evidence is needed to standardize diagnosis and treatment.
Recently, the American Academy of Pediatrics Committee on Infectious Diseases reported in its Red Book, “The data for an association with GAS and either PANDAS or PANS [pediatric acute-onset neuropsychiatric syndrome] rely on a number of small and as yet unduplicated studies. In the absence of acute clinical symptoms and signs of pharyngitis, GAS testing (by culture, antigen detection, or serology) is not recommend for such patients.”
Swedo disagrees with the AAP’s statement, and says children showing psychiatric symptoms who have had a series of strep infections could benefit from clinical workup.
“All the autoimmune encephalitis disorders that can kill you, such as anti-NMDA, present for the first 2 to 5 weeks with psychiatric symptoms only,” she said.
Kenoe’s pediatrician filled her in on the controversy around the diagnosis, as well as around treatment, which for Nate involves use of ibuprofen and antibiotics.
“We had to discuss with our provider and as a family if the benefits of being on long-term antibiotics and ibuprofen would outweigh any harm they could cause. But for us, it was worth having our son back,” said Kenoe.
Some doctors believe ibuprofen can decrease brain inflammation, and that antibiotics also have an anti-inflammatory affect.
“PANDAs is not an active ongoing infection, it’s a misdirected response to the brain; the brain thinks strep is in there so it’s attacking it like so many other autoimmune disorders,” Kenoe said.
Guidelines for treatment of PANDAS, co-authored by Swedo, were published in 2017 in the Journal of Child and Adolescent Psychopharmacology. Based on the severity of the case, treatments include antibiotics and anti-inflammatory medications, such as nonsteroidal anti-inflammatory medications, steroids, or intravenous immune globulin. Psychiatric medications and psychological support, such as cognitive behavioral therapy, also are recommended.
However, the AAP states in its Red Book, “There is also insufficient evidence to support antibiotic treatment or prophylaxis, Immune Globulin Intravenous, or plasmapheresis for children with symptoms suggestive of PANDAS or PANS. Management is best directed by specialists with experience presenting symptoms and signs, which could include child psychiatrists, behavioral and developmental pediatricians, or child neurologists.”
In addition to receiving treatment from Nate’s pediatrician, the Kenoes took Nate to a neurologist who recommended he take antipsychotic medication, which the Kenoes declined.
They also took Nate to a doctor who specializes in PANDAS, who recommended they have Nate’s tonsils taken out to remove any strep infection completely. They went ahead with the surgery shortly after his diagnosis in November of 2018.
The NIMH states that current research does not suggest that tonsillectomies for children with PANDAS are helpful. Still, Kenoe stands by their decision.
“We were hopeful and saw improvement in his flares, but the flares continued well into spring and summer. We saw doctors upon doctors, and one neurologist who doesn’t believe in PANDAS ordered a brain MRI to rule out a tumor. This is how perplexed doctors were by Nate’s behaviors and neurological changes,” said Kenoe.
Ultimately, she believes the antibiotics and anti-inflammatories are what help Nate best.
“I feel so blessed to have had a quick diagnosis and aggressive treatment, as many kids are misdiagnosed with ‘acute psychosis’ and prescribed psychiatric medication with no additional treatment that proves no benefit to treating the root cause, PANDAS,” said Kenoe.
While Nate is much better than he was a year ago, Kenoe says any cold or virus will initiate a flare that could include bedwetting, sensory disturbances, and impulsivity.
“I know a flare is coming when he gets a glazed look, a darkening under his eyes appears, and he’s not showing a lot of emotion. He’s not happy or sad, he’s just not his usual outgoing and spunky self,” said Kenoe.
“Even though we’ve seen vast improvement over the course of a year, he still struggles with sensory issues in his feet especially. An in-home occupational therapist was a great help when he refused to wear shoes or socks. As parents, we of course are looking for a 100 percent recovery. I see progress every month and am extremely thankful, but look forward to PANDAS being a part of our past,” said Kenoe.
Kenoe hopes sharing her story will help other families who feel they have to hide behind the controversy of PANDAS while enduring immense stress.
“Countless families are dealing with this in silence. The hardest part of the whole thing is when you get a cancer diagnosis, it’s recognized. You get tremendous support, and doctors are behind you, but with PANDAS as soon as you say it, many doctors will discredit you,” said Kenoe. “In support groups I belong to for PANDAS, I’ve heard stories of children being taken from their parents to receive psychiatric evaluation, and some parents have waited years for a diagnosis.”
If you’re concerned your child may have PANDAS, Swedo says visit your pediatrician and talk about the abrupt onset of systems they are experiencing, such as urinary frequency, sleep issues, and behavioral changes.
“Focus on the physical as well as on the behavioral. [State] complaints as clearly and logically as possible, but do not use the word PANDAS… let the practitioner tell you that,” she said.
She also suggests visiting the websites ASPIRE and PANDAS Physicians Network for more information.
Kenoe agrees, and says educating herself on PANDAS and advocating for her son is necessary in a time when PANDAS is poorly recognized.
“I’m angry this disorder has made me a more fearful and cautious mother of my three children. I worry about strep all the time. But if I can turn that worry into awareness, I think I can help PANDAS become less controversial, and the less controversial it is, the more funding will go towards research, and the more children will be helped,” she said.
Cathy Cassata is a freelance writer who specializes in stories about health, mental health, and human behavior. She has a knack for writing with emotion and connecting with readers in an insightful and engaging way. Read more of her work here.