What is PANDAS?
PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcus. The syndrome involves sudden and often major changes in personality, behavior, and movement in children following an infection involving Streptococcus pyogenes (streptococcal-A infection).
Strep infections can be mild, causing nothing more than a minor skin infection or sore throat. On the other hand, they can cause severe strep throat, scarlet fever, and other illnesses. Strep is found inside the throat and on the surface of the skin. You contract it when an infected person coughs or sneezes and you breathe in the droplets or touch contaminated surfaces, and then touch your face.
Most people with a strep infection make a full recovery. However, some children develop sudden physical and psychiatric symptoms a few weeks after infection. Once they start, these symptoms tend to rapidly get worse.
Continue reading to learn more about the symptoms of PANDAS, how it's treated, and where you can turn for help.
What are the symptoms?
The symptoms of PANDAS start suddenly, about four to six weeks after a strep infection. They include behaviors similar to obsessive-compulsive disorder (OCD) and Tourette syndrome. These symptoms can interfere with schooling and quickly become debilitating. Symptoms worsen and reach their peak usually within two to three days, unlike other childhood psychiatric illnesses that develop more gradually.
Psychological symptoms may include:
- obsessive, compulsive, and repetitive behaviors
- separation anxiety, fear, and panic attacks
- incessant screaming, irritability, and frequent mood changes
- emotional and developmental regression
- visual or auditory hallucinations
- depression and suicidal thoughts
Physical symptoms may include:
- tics and unusual movements
- sensitivities to light, sound, and touch
- deterioration of small motor skills or poor handwriting
- hyperactivity or an inability to focus
- memory problems
- trouble sleeping
- refusing to eat, which can lead to weight loss
- joint pain
- frequent urination and bedwetting
- near catatonic state
Children with PANDAS don't always have all of these symptoms, but they generally have a mix of several physical and psychiatric symptoms.
What causes it?
The exact cause of PANDAS is the subject of ongoing research.
One theory proposes that it may be due to a faulty immune response to strep infection. Strep bacteria are particularly good at hiding from the immune system. They mask themselves with molecules that look similar to normal molecules found in the body.
The immune system eventually catches on to the strep bacteria and begins producing antibodies. However, the disguise continues to confuse the antibodies. As a result, the antibodies attack the body's own tissues. Antibodies targeting a particular area of the brain, the basal ganglia, may cause the neuropsychiatric symptoms of PANDAS.
The same set of symptoms can be brought on by infections that don't involve strep bacteria. When that's the case, it's called pediatric acute-onset neuropsychiatric syndrome (PANS).
Who's at risk?
PANDAS is most likely to develop in children between 3 and 12 years old who've had a strep infection within the last four to six weeks.
Some other possible risk factors include a genetic predisposition and recurrent infections.
Your child is more likely to get a strep infection in late fall and early spring, especially when they're in close quarters with large groups of people. To help prevent strep infection, teach your child not to share eating utensils or drinking glasses, and to wash their hands often. They should also avoid touching their eyes and face whenever possible.
How is it diagnosed?
If your child is showing unusual symptoms after an infection of any kind, make an appointment with your pediatrician right away. It might be helpful to keep a journal detailing these symptoms, including when they started and how they're affecting your child's life. Bring this information, along with a list of any prescription or over-the-counter medications your child takes or has recently taken, when you visit the doctor. Be sure to report any infections or illnesses that have been going around at school or home.
To diagnose a strep infection, your pediatrician may take a throat culture or run a blood test. However, there are no laboratory or neurological tests to diagnose PANDAS. Instead, your doctor may want to perform a variety of blood and urine tests to rule out some other childhood ailments.
A diagnosis of PANDAS requires a careful medical history and physical examination. The criteria for diagnosis are:
- being between three years old and puberty
- sudden onset or worsening of already existing symptoms, with symptoms becoming more severe for periods of time
- presence of obsessive-compulsive behaviors, tic disorder, or both
- evidence of other neuropsychiatric symptoms, such as hyperactivity, mood changes, developmental regression, or anxiety
- previous or current strep-A infection, confirmed by a throat culture or blood test
What's the treatment?
Treating PANDAS involves addressing both the physical and psychiatric symptoms. To start, your pediatrician will focus on making sure the strep infection is completely gone. You'll also need to work with a licensed mental health professional familiar with OCD and PANDAS.
Treating the strep infection
Strep infections are treated with antibiotics. Most strep infections are successfully treated with a single course of antibiotics. Some of the antibiotics used to treat strep include:
You should also consider having other family members tested for strep because it's possible to carry the bacteria even though you have no symptoms. To help avoid re-infection, replace your child's toothbrush right away and again when they finish their full course of antibiotics.
Treating psychological symptoms
Psychiatric symptoms may start to improve with antibiotics, but they'll likely still need to be addressed separately. OCD and other psychiatric symptoms are generally treated with cognitive behavioral therapy.
OCD also usually responds well to selective serotonin reuptake inhibitors, a type of antidepressant. Some common ones include:
These medications will be prescribed in small doses to start. They can be slowly increased if necessary.
Other treatments are controversial and must be decided on a case-by-case basis. Some doctors may prescribe corticosteroids, such as prednisone, to improve symptoms of OCD. However, steroids can make tics even worse. In addition, when steroids do work, they can only be used for a short period. At this point in time, steroids are not routinely recommended for the treatment of PANDAS.
Some severe cases of PANDAS might not respond to medications and therapy. If this happens, a blood plasma exchange to remove the faulty antibodies from their blood is sometimes recommended. Your pediatrician may also recommend intravenous immunoglobulin therapy. This procedure uses healthy donor blood plasma products to help boost your child's immune system. While some clinicians report success with these treatments, there are no studies confirming that they work.
Are there any potential complications?
Symptoms of PANDAS can leave your child unable to function at school or in social situations. Untreated, symptoms of PANDAS may continue to worsen and can result in permanent cognitive damage. For some children, PANDAS can become a chronic autoimmune condition.
Where can I get help?
Having a child with PANDAS can be extremely stressful because it tends to come on without warning. Over the course of a few days, you might notice dramatic behavioral changes with no apparent cause. Adding to this challenge is the fact that there is no one test for PANDAS, though diagnostic criteria have been developed. It's important to make sure these criteria are met before diagnosing PANDAS.
If you feel overwhelmed, consider these resources:
- PANDAS Network offers general information, news about the latest research, and lists of doctors and support groups.
- International OCD Foundation has information about OCD in children as well as a downloadable fact sheet comparing OCD to PANDAS and PANS. This is especially helpful if your pediatrician isn't very familiar with PANDAS.
- The PANDAS Physicians Network offers PANDAS Practitioner Directory, a searchable database of doctors who are familiar with PANDAS.
Your child may also need extra help at school. Talk to their teacher or school administrators about the diagnosis, what it means, and how you can all work together in the best interests of your child.
What's the outlook?
PANDAS wasn't identified until 1998, so there aren't any long-term studies of children with PANDAS. However, this doesn't mean your child can't get better.
Some children improve quickly after starting antibiotics, though symptoms may return if they get a new strep infection. Most recover without significant long-term symptoms. For others, it can become an ongoing problem requiring periodic use of antibiotics to control infections that may cause flare-ups.