NAZARETH, Pa. — While a strep infection, such as strep throat, is known to be serious, it's less commonly known that it can lead to neuro-psychiatric conditions in children.
And that it can cause sudden and significant changes in a child's mental and behavioral health.
It was behind the struggle of a 12-year-old Nazareth boy.
As do many boys his age, Matthew Blaine loves gaming — and other interests and behaviors typical for a kid his age.
"I like video games, soccer, hockey," Matthew said. "I like watching TV. I like building forts. I like just going to my room and playing around with my Legos."
His mother, Nicole, smiled as she described her son: "Very smart, very funny, silly, um, he just wants people to laugh all the time. He's very trusting. He's very honest.”
"I just get really mad sometimes, and it's hard to remember things a lot of the time, and I don't like it at all."Matthew Blaine
But a few years ago, Nicole Blaine said, she noticed her oldest son acting not-so-typical for his age.
"Everything started at around 5," she said. "We started noticing some things, like the infections and little things, like he wasn't listening that well.
"So it wasn't really a big deal until he reached fourth grade. That's when I was getting phone calls from the school all the time for behaviors, and the separation anxiety was really bad."
Matthew said, "I just get really mad sometimes, and it's hard to remember things a lot of the time, and I don't like it at all."
Setting out to get answers
Nicole Blaine, a mother of three, said she knew something was off.
She described the situation with Matthew as, “I don't know what's in his control and what's out of his control."
"Like, that's what's the big thing for it, for me," she said. "When he's not listening and stuff, sometimes he has no memory of what happens.
"Like, he'll be crying, and there were times where he was spitting and just acting out of control, but he doesn't remember sometimes after it."
So she set out to get some answers.
"I read all of the symptoms, and I was like, 'Well, this fits. So I had to go to the pediatrician and tell him that I wanted all the blood work."Nicole Blaine, parent
Nicole Blaine said she scoured the internet and found information about two neuro-psychiatric disorders referred to as PANS and PANDAS.
"Before I knew about the PANDAS, [Matthew] was diagnosed with ADHD, odd anxiety, social pragmatic communication disorder and a tick disorder," she said.
"He was on four or five different medications for that stuff, and nothing helped.”
The behaviors persisted, but so did the Blaine family.
"I read all of the symptoms, and I was like, 'Well, this fits. So I had to go to the pediatrician and tell him that I wanted all the blood work," Nicole Blaine said.
“He argued with me about it, but he did eventually order it."
Matthew's bloodwork came back high for strep.
"He would always get strep skin infections,” the mother said. He never actually got the strep throat. He would always get raw, open infections on his skin."
Matthew described the infections as “it's like a rash, but I don't really feel it at all."
The family was finally getting some answers.
A diagnosis
A specialist Blaine found on Long Island, New York, diagnosed Matthew with PANDAS, then referred him to a doctor closer to the Lehigh Valley — Dr. Angela Camasto.
"PANDAS is actually a subset of PANS, and PANDAS stands for pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection."Dr. Angela Camasto, Woodlands Healing Research Center
"PANS stands for pediatric acute onset neuropsychiatric syndrome, and that can be caused by both viruses and bacteria," Camasto said.
"Some of the more common ones are mycoplasma, which is the germ that causes walking pneumonia, the flu, COVID and strep.
“When the condition is triggered by strep, it's called PANDAS. So PANDAS is actually a subset of PANS, and PANDAS stands for pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection."
Camasto is Matthew's pediatrician from the Woodlands Healing Research Center, a Quakertown nonprofit whose mission is to treat people with chronic medical illness.
It also provides primary care for all ages.
"We are similar to conventional medicine in that we do take insurance, but we are different in that we are looking for root causes of illness and using some integrative and holistic methods to try to heal the person's body,” Camasto said.
"I focus on complex chronic medical problems like autism, PANS and PANDAS, ADHD, Lyme, tick, Bartonella, tick-borne illnesses, that sort of thing."
Shows up months later
Camasto said PANS and PANDAS are two types of inflammatory brain conditions that occur when an immune response gets misdirected.
So instead of targeting the infection, it causes inflammation in the brain which causes psychiatric conditions.
"A typical PANS or PANDAS case will present with an abrupt onset of OCD or eating restriction, usually at the same time as an illness, or shortly after, maybe even up to one to two months after," Camasto said.
Camasto said some of the OCD behaviors to be aware of include: "excessive hand washing, sometimes an overwhelming sense of guilt and needing to confess even the smallest mistakes, compulsions to go through, routines and rituals for simple activities of daily living.
"Sometimes the child may need constant reassurance, which would be represented with repeated questions over and over again, like, ‘Is the door locked?’ ‘Is the meat cooked?’ That sort of thing."
Camastro said there are three criteria she uses to diagnose the conditions.
"The first criteria is, again, the abrupt onset of OCD or eating restriction," Camastro said. "The second criteria is that you have to have two other neuropsychiatric symptoms from a list of seven."
The doctor says those criteria can be found on websites such as the Neuroimmune Foundation and the PANDAS Network.
“Then the third requirement is that you're making sure that you rule out any other kind of medical or neurological condition," she said.
"So in a sense, this diagnosis is a diagnosis of exclusion. You always want to be considering other more severe or appropriate diagnoses for the situation."
Treatment
In Matthew's case, he was able to get a diagnosis in 2023 and has undergone treatment since.
"Once we knew that it was PANDAS, and he started getting treated for that, then they started going away,” Nicole Blaine said.
Camasto said she found patients respond best when a three-pronged approach is used to treat PANS and PANDAS.
"The first approach is to first take a very thorough history and do very comprehensive lab work to try to find the triggering infection," she said.
"And once we find it, we treat it with appropriate antivirals or antibiotics.”
She said the second part "is to try to decrease the immune source, immune responses, inflammatory cascade. And we can do that with medications like NSAIDs, like ibuprofen or steroids.
"And I also use, being an integrative office, I use herbs and supplements like fish oil and curcumin.
"And then the third part is to treat the psychiatric symptoms. So we often encourage getting involved with therapy that's targeted specifically for OCD and, in some cases, psychiatric medicines like SSRIs are needed."
'A lot of work and time'
Nicole Blaine said Matthew was started off on two antibiotics, "and he's on, like, a ton of supplements."
"He doesn't have separation anxiety anymore — that was a big thing that completely disappeared," she said. "The rage, like he used to get really angry and throw things, that part has disappeared."
As symptoms disappeared, she said, the Blaine family was able to get back to a more normal life.
"It is very possible to get kids into remission for this. It is a lot of work and time."Dr. Angela Camasto
Blaine said she has joined a few support groups since her son was diagnosed and most of the parents of older patients say they’ve grown out of the symptoms of these conditions.
Camasto said that with the right treatment, doctors say the symptoms will eventually go away.
"It is very possible to get kids into remission for this," she said. "It is a lot of work and time."
But for Matthew, it's worth it.
"I've been getting a lot better since I saw my first doctors," he said, proudly. "And I feel a lot better than I used to."
