Maria’s daughter *Jessie is an anxious 9-year-old. She cries, and gets very angry and frustrated. On top of all this, she’s also suffered from bouts of strep throat throughout her childhood.
Maria, a Staten Islander, said her daughter has PANDAS, (short for pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections), a condition that has been linked to strep throat. According to PANDAS.org, the condition can lead to obsessive-compulsive disorder, anxiety, facial tics and other behavioral, mental or neurological symptoms.
“It’s hard to tell, because not many doctors know about it,” Maria said. “When I first saw things happening with her, I had gone to the pediatrician to ask for certain types of blood work. My only indication that she might have had it is that she always had chronic strep.”
Up until 2020, Jessie was getting strep throat often. In 2019 alone, she had the painful condition six times, back to back. She would often have it in combination with the flu and high fever, Maria said.
It was during the pandemic when Maria saw Jessie’s symptoms getting worse.
“When she was home during the pandemic, I noticed the ADHD behaviors coming out,” Maria said. “Then, once the schools opened again, I had a really difficult time getting her to go. She would constantly cry and wouldn’t do it.”
Getting Jessie to go to school was so difficult, Maria eventually chose the remote school option, which was available at the time. Today, Jessie continues to attend school remotely.
According to Maria, Jessie’s recent blood work shows she still has strep throat antibodies in her system, even though she hasn’t had the condition since 2020. Several pediatricians dismissed PANDAS and prescribed antibiotics, but eventually an infectious disease doctor said the little girl “definitely” has PANDAS.
Maria isn’t the only parent concerned about her child having PANDAS. She’s met several parents whose children are experiencing anxiety, OCD, and other symptoms after bouts of strep throat, she said.
In the meantime, Jessie goes to private therapy for treatment. Maria continues to be concerned and is currently figuring out what the next steps should be for her daughter.
“To me, it’s not normal when you have elevated antibodies of strep in your system when you haven’t had it in a long time,” Maria said.
The PANDAS Controversy
Interestingly enough, strep throat antibodies can be in a person’s blood for quite a while, according to Rebekah Diamond, M.D., an assistant professor of pediatrics at Columbia University and author of Parent Like a Pediatrician, said.
And there’s something else important for parents to know. PANDAS is considered controversial in the medical science world. Why? Well, in short, many physicians don’t believe it can be a real diagnosis.
The diagnosis—or idea—of PANDAS comes from a hypothesis made in the 1990s by a small group of doctors that the condition could be related to having a strep infection. But this guess hasn’t been proven in any real way.
“While it’s still possibly something that’s out there, we just don’t have any good evidence yet to suggest that strep throat is what’s causing these types of symptoms,” Diamond said.
Treatment of PANDAS
Whether PANDAS can be diagnosed or not, the usual treatments for OCD, anxiety and other symptoms can still work.
“There are still really good treatments for kids who have these kinds of symptoms,” Diamond said. “It works to do all of the treatments for OCD, tic disorders, And, if you have a strep throat, that can definitely be treated, too.”
In the age of the internet, where anyone at any time can research medicine, Diamond worries that some groups might be capitalizing on an already-concerned parent.
“From my perspective, this is a good example of advocacy and other groups online have really taken advantage of parents being so frustrated and desperate to help their child,” she said. “They convince a lot of parents that having a really specific PANDAS treatment is the only type of treatment that works.”
In other words, treatment such as anxiety medication or behavioral therapy works whether a child has these symptoms with or without a PANDAS diagnosis. If a doctor wants to treat the behavioral conditions without a PANDAS diagnosis, some parents can feel dismissed, like their child’s symptoms aren’t real, says Diamond, who often discusses the condition with concerned parents.
“I try to explain to parents that these diseases, whether it’s a psychiatric disease or another medical disease—these are all real diseases with real treatments with real things going on in the body. Unfortunately, there’s a lot of stigma about psychiatric diagnoses and treatments,” Diamond said, adding that there isn’t enough mental health support available for kids.
Parents should also be aware of treatments that some doctors prescribe after giving a PANDAS diagnosis. Some of these treatments include long-term antibiotics that are heavy-duty, unproven and can do a lot of damage to kids.
“I just don’t want parents to be taken advantage of,” Diamond said.
Diamond recommends parents who have concerns about PANDAS talk to their pediatrician. It’s important to choose a pediatrician whom they can trust and feel comfortable enough to ask questions.
Finally, parents with concerns can rest easy knowing that even if there does turn out to be a link between a viral infection and psychiatric behaviors, anti-anxiety medications and cognitive behavioral therapy would still work.
“All psychiatric symptoms are from some sort of brain process we don’t understand yet,” the doctor said. “It’s important to still do research, but it’s also just as important to treat kids so they feel better. The therapy works, and that’s important for parents to know.”
*This name has been changed to protect the subject’s privacy.