Strep throat is a common childhood illness. Some kids get it again and again, and a simple round of antibiotics usually clears it up. But for a small number of children, the bacteria that causes strep is thought to trigger dramatic behavioral changes known as PANDAS syndrome. PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.
With PANDAS, your child may seem to turn into a different person overnight. They may become moody, anxious, and aggressive; show obsessive-compulsive behaviors; and struggle with body movements they can’t control. It can be scary, but most children recover fully – especially if they get prompt treatment.
PANDAS is considered rare, and there's a lot doctors don't know about it. Some experts question whether the symptoms actually result from an infection. But the American Academy of Pediatrics says PANDAS is "likely" a valid diagnosis. One thing most scientists agree on is that we need more research into this condition.
What Causes PANDAS Syndrome?
Doctors aren’t sure why some children get PANDAS, but one theory is that it's an autoimmune disorder. That’s when your immune system attacks your body’s healthy cells by mistake – in this case, brain cells. Strep bacteria cells can mimic normal cells, causing the immune system to attack both the bacteria and similar-seeming healthy cells.
Researchers believe that children with a certain genetic makeup may have a higher risk of PANDAS, but they haven’t been able to identify a specific gene. It may also be more likely in children who have frequent group A streptococcal infections, including strep throat and scarlet fever.
PANDAS is thought to be most common in children ages 3-12, but it can affect older children, too.
PANDAS Syndrome Symptoms
Symptoms of PANDAS come on suddenly and last a few days to weeks. They may go away and return later. Common symptoms include:
- Uncontrolled, jerky movements, or tics
- Obsessive-compulsive behavior, like washing their hands repeatedly or constantly seeking reassurance
- Lack of interest in food
- Symptoms of attention deficit hyperactivity disorder (ADHD), such as hyperactivity, fidgeting, and trouble paying attention
- Anxiety, including fear of being away from parents or other caregivers
- Depression
- Joint pain
- Moodiness, crankiness, and crying or laughing when it doesn’t make sense
- Sensory problems, including being very sensitive to light and seeing or hearing things that aren’t there
- Sleep problems
- Bedwetting, peeing more often during the daytime, or both
- Trouble writing, drawing, or doing schoolwork
PANDAS Syndrome Diagnosis
It can be challenging to diagnose PANDAS. There's no test that can confirm someone has it, and its symptoms can mimic those of other disorders. Your child’s doctor will examine them, ask questions about their health history, and assess their symptoms. They may also do tests such as:
- A culture for the strep bacteria
- Allergy tests
- Lab tests to see how well their immune system is working
- The Cunningham panel, which helps detect autoimmune disorders
- A brain scan
A mental health professional may also examine the child to rule out other conditions that have similar symptoms.
If your child doesn’t or didn’t have strep, they don’t have PANDAS. But their symptoms could still be part of an immune system response gone wrong.
Is it PANDAS or PANS?
PANDAS is considered a type of pediatric acute-onset neuropsychiatric syndrome (PANS), a broader group of conditions that can affect your child’s brain. The symptoms of PANS are the same as those of PANDAS. But they may be triggered by something other than strep, such as immune system problems, things in the environment, or other types of infections. Your child’s doctor may order blood tests or brain scans to see if a different infection or something else is causing the symptoms.
PANDAS Syndrome Treatment
The sooner a doctor can diagnose and treat PANDAS, the better the chances of symptom relief. Treatment usually involves medication and therapy.
Antibiotics. Your child’s doctor will treat the strep infection with antibiotics. It usually takes a week or two, although some kids improve within days. You may have to try more than one antibiotic to find what works.
Cognitive behavioral therapy. While medications fight the infection, therapy can help control your child’s obsessive-compulsive disorder (OCD). A therapist will teach your child ways to deal with OCD thoughts and fears. It’s important for you to learn what goes on in therapy so you can help your child apply it at home.
Anti-inflammatories. These drugs can calm an overactive immune system. Your child may get steroid pills to take for several days. Nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen may also help.
Antidepressants. Medications called selective serotonin reuptake inhibitors (SSRIs) can help manage OCD. But they sometimes have serious side effects, especially for children with PANDAS. If your doctor recommends them, make sure you understand the right dose to give and any problems to watch for.
IVIG/plasmapheresis. If other treatments don’t work, or your child’s symptoms are so severe they can’t function, their doctor might consider a more extreme procedure to "reset" their immune system. One option is IVIG, which involves an infusion of antibodies from other people, given through a vein. Plasmapheresis is another option in which doctors remove blood from your child’s body and filter it through a machine that removes the antibodies that are attacking their brain.
Does PANDAS Syndrome Go Away?
Although it may take time, most children diagnosed with PANDAS recover completely with treatment. Symptoms tend to slowly get better over several months once the strep infection clears, but there may be ups and downs.
PANDAS symptoms are likely to return if your child gets strep again. Sometimes, all it takes is exposure to the bacteria. To help your child stay healthy, teach them good hygiene habits, such as washing their hands, changing toothbrushes often, and staying away from sick people. Your whole family may need to get tested for strep to make sure no one is carrying the bacteria.
Your pediatrician may prescribe long-term antibiotics to prevent new strep infections. Some children have their tonsils removed. But scientists haven’t studied either of these strategies enough to know whether they work.
It’s rare for kids older than 12 to have reactions to strep infections. But that doesn’t mean your teenager is out of danger. Very little research has looked into whether PANDAS can affect older kids or adults. So it’s important to know the symptoms and get medical help quickly when they appear.
PANDAS Syndrome Complications
PANDAS syndrome can be very challenging for you and your child, even if it only lasts a short time. Episodes that keep coming back are even more likely to cause short- and long-term complications, such as:
- Trouble at school
- Problems with learning and concentration
- Lasting effects on the brain if the condition is left untreated or happens often
To prevent these effects, work closely with your doctor to get fast and proper treatment for your child. Take care to prevent reinfection and future PANDAS episodes.
Where to Get Help for PANDAS Disease
Not all doctors have experience diagnosing PANDAS. Along with their pediatrician, your child may need to see a rheumatologist, an immunologist, or someone who specializes in strep infections. A referral to a psychiatrist or psychologist will probably be part of the treatment plan. If your child has PANDAS symptoms, but their doctor doesn’t want to consider that diagnosis, you may choose to get another medical opinion from another pediatrician or specialist.
It’s natural to feel overwhelmed when your child has PANDAS. Here are some places you can get the support you need:
- PANDAS Network : This resource offers information about new research, doctors, support groups, and more.
- International OCD Foundation : This group has a sheet you can download that compares OCD to PANDAS and PANS.
- PANDAS Physicians Network : This list includes pediatricians and other doctors who treat children with PANDAS.
If your child needs extra support at school, discuss their diagnosis with their teacher, and explore ways you can work as a team to help your child.
Takeaways
- PANDAS syndrome is a condition that's thought to follow a strep infection.
- It’s marked by sudden changes in mood and behavior.
- PANDAS can be treated, but it may return with future strep infections.
- It’s important to notify your child’s doctor if you notice any signs of PANDAS.
- Early treatment may help prevent possible long-term complications.
PANDAS Syndrome FAQs
What happens if PANDAS syndrome goes untreated?
Untreated PANDAS syndrome could have long-term effects on your child’s brain.
Can an adult develop PANDAS?
It’s very rare, but adults can develop PANDAS.
Can you fully recover from PANDAS?
With treatment, most people with the condition make a full recovery.
How long does PANDAS syndrome last?
PANDAS symptoms can last a few days or weeks and may go away. But they can come back after a long period if your child is re-exposed to the bacteria that causes strep.