What Is PANDAS?
PANDAS is a complex disorder that consists of many different symptoms unique to each patient. Learn more about what PANDAS is and how it affects the brain and body.
Pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS) is a disorder that results from infection with streptococcal-A, commonly referred to as strep, or strep throat. Following infection with strep, children with PANDAS syndrome develop severe physical, neurological and psychological disturbances that interfere with their daily functioning. Thankfully, we can treat this disorder. In addition, we can moderate its symptoms through a professional following an accurate diagnosis.
Based on PANDAS Network research, a conservative estimate of PANDAS prevalence is 1 in 200 children in the United States alone. This is a staggering number, especially considering that many doctors, medical professionals and clinicians do not recognize PANDAS. Many children go untreated, sometimes experiencing debilitating symptoms for years until finding the cause and visiting a PANDAS specialist.
The root cause of PANDAS is believed to be a strep infection triggering an autoimmune disorder in certain susceptible individuals. An autoimmune disorder is when the immune system mistakenly attacks cells in the body—in essence, attacking itself. In the case of PANDAS, strep bacteria cause the immune system to attack healthy cells in the brain (specifically the basal ganglia). These result in neurological abnormalities, mental and academic regression and severe psychological problems.
Symptoms generally appear soon after a bout of strep throat. However, the initial onset of symptoms may not appear for months in certain cases. So even if your child exhibits PANDAS symptoms long after a strep infection, they could still be experiencing PANDAS.
Additional factors for developing PANDAS may be related to genetic differences. Based on 100 self-reports from families, 70% reported both autoimmune illness and strep-related severity illness in their family. More research is being done in this area to investigate genetic links between the predisposition to autoimmune disorders, strep infection and developing PANDAS.
Just as all immune systems are different, so are the signs and symptoms of PANDAS. However, some distinguishing features of PANDAS include mood lability (rapid, often exaggerated changes in mood), tics, obsessive-compulsive behavior and the acute onset of severe anxiety. These symptoms tend to flare up, diminish and return cyclically. Symptoms can reoccur with subsequent strep infections, which PANDAS children are susceptible to becoming reinfected with repeatedly. Often a family history of rheumatic fever or other strep-related disease is noted.
PANDAS falls under the umbrella of PANS (pediatric acute-onset neuropsychiatric syndrome). Both diagnoses include the abrupt, pre-pubertal onset of obsessions, compulsions or tics. But PANDAS requires the association with streptococcal infection and PANS is associated with other infections, such as influenza or Lyme disease. Some other common symptoms of PANDAS or PANS are:
- Tics, which can be verbal—such as grunting—or jerking of the limbs or head
- Depression, which can lead to suicidal thoughts and behavior, uncontrollable crying or fear
- Extreme rage or inability to control anger; breaking items and throwing objects
- Sleep issues, including lack of sleep or excessive fatigue
- Restrictive eating or avoidance of food, which can cause extreme weight loss
- Unusual gait, poor coordination or degradation of handwriting
- OCD-like symptoms, such as repetitive actions, fear of germs or developing habits and rituals that must be followed to avoid anxiety and panic
- Behavioral abnormalities and personality changes
- Sensory problems, like sensitivity to light and sound
- Academic skill deterioration and mental regression
OCD and tics are often strong indicators when considering a PANDAS/PANS diagnosis. Among parents with diagnosed children, 37% reported OCD-like symptoms, 14% reported tics and 49% reported both. In fact, it is estimated that children with PANDAS/PANS may make up as much as 25% of children diagnosed with OCD and tic disorders, such as Tourette syndrome.¹
An accurate clinical diagnosis will consider the collection of signs and symptoms, lab test results and your child’s medical history. While there is no definitive test for PANDAS at this time, your provider can use several tests, including strep cultures, allergy tests, immunological tests, brain scans and the Cunningham panel (a test that determines the likelihood that the patient’s disorder is autoimmune in nature) among others to give you a PANDAS diagnosis.
Clinical diagnostic criteria for PANDAS/PANS are specific and consist of the following:
- The sudden, dramatic onset of obsessive-compulsive disorder or extremely restricted food intake.
- The simultaneous appearance of additional neuropsychiatric symptoms with acute, severe onset from at least two of the following seven categories:
- Irritability, aggression or oppositional behaviors
- Motor or sensory abnormalities
- Emotional lability or depression
- Behavioral (developmental) regression
- A decline in school performance
- Somatic symptoms, such as sleep disturbances, increased urinary frequency or enuresis
- These symptoms are not better explained by another known medical condition or neurological disorder, such as Tourette disorder, Sydenham’s chorea or systemic lupus erythematosus.
Other medical disorders can present with signs and symptoms that are similar to PANDAS/PANS. Using various tests, your provider can help identify your child’s symptoms and rule out other psychological, neurological and medical conditions. Once your child receives a PANDAS/PANS diagnosis, they can begin treatment to target the underlying cause and get on the road to symptom relief.
It is critical to treat PANDAS as soon as possible after symptoms appear. The earlier you start, the better the outcome will be. PANDAS symptoms may worsen over time without treatment. PANDAS treatment may consist of the following:
- Antibiotics, such as penicillin, Augmentin, cephalosporins or azithromycin
- Prophylactic antibiotics, which can reduce the recurrence of symptoms in the long term
- IVIG, an intravenous solution comprising immunoglobulins that treat encephalitis, immune deficiencies and other immune disorders
- Plasmapheresis, which removes harmful auto-antibodies from the blood to reduce PANDAS symptoms
You may consider other treatments in conjunction with these therapies, including tonsil removal, NSAIDs (like ibuprofen), steroids or psychological interventions such as cognitive-behavioral therapy or exposure and response therapy (ERP). Specific treatment plans will depend on your child’s symptoms, which you can discuss with your medical provider.
The duration of PANDAS differs between patients, the severity of symptoms and how soon you begin treatment for the condition. PANDAS generally appears in childhood. According to 700 self-reports, the ages of onset were:
- 1-3 years: 11%
- 4-9 years: 69%
- 10-13 years: 19%
- 14+ years: only 1%
According to current research, PANDAS is a pediatric disease caused by a strep infection, which is common in young children and demonstrated in these prevalence rates. PANDAS/PANS symptoms seem to flare and remit throughout childhood and disappear in adulthood with proper treatment and symptom maintenance.
PANDAS Network offers even more PANDAS resources here. These resources can help you on your journey as you heal your child and support them as they recover from PANDAS. From connecting you to other parents to keeping you up to date with the newest research and raising awareness for PANDAS, you can find helpful resources for interpersonal support and education about PANDAS/PANS.
Additionally, PANDAS Network has special reports to aid parents and educators in learning more about getting help for PANDAS disorder and PANS. Click here to read stories from other PANDAS families, check out useful articles or use our find a physician tool to get help.
It can be a challenge to get a PANDAS diagnosis and treatment for your child. After all, this is a relatively new, commonly misunderstood and frequently misdiagnosed disorder. Your child’s provider should be able to connect you with someone or refer you to another office that specializes in these types of childhood autoimmune disorders. However, if your provider cannot refer you to a specialist, PANDAS Network has a list of helpful resources, including a network of physicians who are dedicated to learning more about PANDAS and educating other medical professionals, at this link.
Additionally, you can also discuss resources with other PANDAS parents online or in support groups to find a PANDAS specialist for your child.
Supporting your child when they are struggling with PANDAS symptoms can be difficult. The important thing is to try to be aware and understanding of the pain and confusion they are experiencing. Find a good medical provider who can help diagnose and treat your child promptly so they can reduce their symptoms quickly and have the best possible treatment outcome.
You can also support children with PANDAS disease by advocating for them in your community. Talk to your family, friends, your child’s school, neighbors and other medical providers, and provide them with resources to learn about PANDAS/PANS and how to interact and help other children with these conditions.
While it may be frightening at times, know that you’re not alone. Other parents are going through the same thing, and they are here to help you feel understood and supported in your family’s PANDAS journey.
If you’re looking for additional resources and community support, join the PANDAS Network support group as a family or treating professional member.