One moment you have a healthy, happy-go-lucky, carefree child. Then suddenly, seemingly overnight, your child wakes up a different person. They are moody, anxious, aggressive and compulsively obsessing about seemingly trivial things or has developed restrictive eating.
Is this a real-life Dr. Jekyll and Mr. Hyde situation, or is there something medically wrong with your child?
When a sudden, inexplicable change occurs in your child’s health, a proper diagnosis and treatment can make all the difference. This is particularly true in the case of autoimmune disorders known as PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) or a subset of PANS that is associated with strep and known as PANDAS. (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections).
The National Institute of Mental Health brought awareness and recognition of PANS/PANDAS in the 90s, and today scientists estimate as many as 1 in 200 children may have PANS/PANDAS.
But some experts contest this figure or even the conditions’ existence. Because providers may not recognize that there is a biological reason for the change in your child’s behavior, for some parents it can be a more difficult journey to diagnosis and appropriate treatment for their child.
The Children’s Postinfectious Autoimmune Encephalopathy (CPAE) at the University of Arizona Steele Children’s Research Center, developed in partnership with Banner-University Medicine, is trying to change that. They are one of several recognized institutions across the country that integrates basic science and clinical research, clinical care and teaching to address a spectrum of neuropsychiatric disorders (such as PANS/PANDAS) that are often misdiagnosed, underdiagnosed or undiagnosed in children.
Georgette Mehalik, a pediatric nurse practitioner at the CPAE Center, is the primary care mental health specialist who oversees follow-up care for PANS and PANDAS patients from around the country.
Mehalik helps shed some light on PANS/PANDAS, why they occur and next steps if you are concerned about your child.
What is PANS/PANDAS?
PANS is a clinical diagnosis given to children (ages 3 to puberty) who very suddenly begin exhibiting obsessive compulsive disorder (OCD) or severely avoidant/restrictive food intake disorder and associated symptoms. It’s called “acute onset” because the changes occur within 2 to 3 days. The cause of PANS is unknown but believed to be triggered by infections.
PANDAS is a subset of PANS but symptoms are triggered by a streptococcus infection, like strep throat. Children at risk are those who have recently had a common childhood infection.
Mehalik said to meet diagnostic criteria for PANS/PANDAS, children must exhibit OCD or food avoidance along with two or more of these neuropsychiatric symptoms:
- Anxiety (often social/separation)
- Emotional changes or Depression
- Irritability, Aggression or Oppositional behavior
- Behavioral or developmental regression (i.e., baby talk)
- Deterioration in school performance, ADHD like symptoms, memory and cognitive changes
- Sensory or motor changes
- Somatic signs and symptoms often sleep disturbances, urinary accidents and more frequency.
“Because of the episodic nature of these disorders, sometimes parents may miss the first signs or believe the strange symptoms are just because their child isn’t feeling well,” Mehalik said. “However, most parents often recall when symptoms started or the day they ‘lost their child.’ Often it’s overnight or within days of an infection."
Why does PANS/PANDAS occur?
The exact cause is still under investigation, but the consensus is that PANS/PANDAS is caused by an autoimmune response to infection.
“Streptococcal bacteria are known to hide out by mimicking human cells, causing the immune system to make antibodies to cells very similar to it’s own cells” Mehalik said. “As a result of the immune response, the blood brain barrier may get damaged. There is a very small, thin area above the nose—the thinnest part of your skull—that may allow antibodies to get into the brain and disrupt the function of the basal ganglia, amygdala and lateral hypothalamus. These areas control things like mood, emotions, behavior, cognition and sensations.”
How is it diagnosed?
At this time there is no single test to confirm whether your child has PANS/PANDAS, and because it is a newly recognized condition, not all doctors are knowledgeable or experienced in treating these conditions. But, the University of Arizona Banner Team is working hard to help educate primary providers on this condition. Mehalik is educating professionals in the Southwest region to make sure that children are recognized and treated quickly. If the diagnosis is recognized early, treatment with antibiotics and/or anti-inflammatory medication may be the only treatment needed.
Because the diagnosis of PANS/PANDAS is generally not recognized, complete care for the child can require a multi-disciplinary approach with careful medical history and physical examination. Your child’s doctor and specialists will need to rule out other conditions that could be causing the symptoms. They may order a strep test, urine test and blood work to see if an infection or something else entirely is causing the symptoms. Your child might also need to be seen by a behavioral health specialist as part of the evaluation.
Diagnosis can be difficult because not every child has every symptom and there is not a test to do to confirm the diagnosis. PANS/PANDAS can be confused with the onset of other mental health conditions and this makes a team evaluation with medical and psychiatric professionals important if there is a question regarding the diagnosis. When a child completes this comprehensive evaluation and meets the criteria a clinical diagnosis of PANS/PANDAS can be made.
Mehalik also suggests that parents seek help immediately from their child’s physician when symptoms are first noted and keep a detailed log of the changes they are seeing in their child.
How is PANS/PANDAS treated?
There is a three-pronged approach to treatment:
- Treat the original infection with antibiotics
- Modulate and modify your child’s immune system
- Psychological therapy and counseling to aid OCD and other symptoms.
“To start, we will want to make sure we treat the identified or suspected infection,” Mehalik said. “But we also want to calm the overreacting immune system and sometimes this may take a while after the initial flare.”
“After the initial flare, symptoms will wax and wane over time,” Mehalik said. “It’s helpful to keep a journal detailing these symptoms, when they started and how they affected your child’s life.”
Your child may also need support at school. Speak with their teacher and the school administration about your child’s diagnosis and any special considerations or changes to help accommodate your child.
Will my child ever get better?
The good news is that most children, if recognized and treated promptly, do eventually recover completely and treatment can be stopped, however, there are some who develop persistent neuropsychiatric symptoms or develop worsening symptoms after subsequent infections. For those children who don’t respond well to treatment, therapy is redirected toward rehabilitation and support for the child and family.
“To help your child stay healthy, make sure they are washing their hands, changing their toothbrushes often, avoiding others who are sick and taking common sense precautions to prevent illness.” Mehalik said.
What should I do if I think my child has PANS/PANDAS?
Early intervention and treatment are critical to shortening the course of the illness, its recurrences and the functional impairments your child may be experiencing. If your child’s behavior has suddenly changed within days of being ill and is experiencing new symptoms of OCD or food restrictions along with other neuropsychiatric symptoms, don’t wait, see your PCP to be evaluated.
For additional resources, visit the PANDAS Network, the PANDAS Physicians Network or contact the CPAE Center for further questions or concerns.