Self Help Leaflets - PANDAS—Questions and Answers

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Overview

What is PANDAS?

PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. A child may be diagnosed with PANDAS when:

• Obsessive compulsive disorder (OCD) and/or tic disorders suddenly appear following a strep infection (such as strep throat or scarlet fever); or

• The symptoms of OCD or tic symptoms suddenly become worse following a strep infection.

The symptoms are usually dramatic, happen “overnight and out of the blue,” and can include motor and/or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody or irritable, experience anxiety attacks, or show concerns about separating from parents or loved ones.

What causes PANDAS?

The strep bacteria are very ancient organisms that survive in the human host by hiding from the immune system as long as possible. It hides itself by putting molecules on its cell wall so that it looks nearly identical to molecules found on the child’s heart, joints, skin, and brain tissues. This hiding is called “molecular mimicry” and allows the strep bacteria to evade detection for a long time.

However, the molecules on the strep bacteria are eventually recognized as foreign to the body and the child’s immune system reacts to them by producing antibodies. Because of the molecular mimicry by the bacteria, the immune system reacts not only to the strep molecules, but also to the human host molecules that were mimicked; antibodies system “attack” the mimicked molecules in the child’s own tissues.

Studies at the NIMH and elsewhere have shown that some cross-reactive “anti-brain” antibodies target the brain—causing OCD, tics, and the other neuropsychiatric symptoms of PANDAS.

Could an adult develop PANDAS?

PANDAS is considered a pediatric disorder and typically first appears in childhood from age 3 to puberty. Reactions to strep infections are rare after age 12, but researchers recognize that PANDAS could occur, though rarely, among adolescents. It is unlikely that someone would experience these post-strep neuropsychiatric symptoms for the first time as an adult, but it has not been fully studied.

It is possible that adolescents and adults may have immune-mediated OCD, but this is not known. The research studies on immune-mediated OCD at the NIMH are restricted to children.

Signs and Symptoms

How is PANDAS diagnosed?

The diagnosis of PANDAS is a clinical diagnosis, which means that there are no lab tests that can diagnose PANDAS. Instead, health care providers use diagnostic criteria for the diagnosis of PANDAS (see below). At the present time the clinical features of the illness are the only means of determining whether or not a child might have PANDAS.

The diagnostic criteria are:

1. Presence of obsessive-compulsive disorder and/or a tic disorder
2. Pediatric onset of symptoms (age 3 years to puberty)
3. Episodic course of symptom severity (see information below)
4. Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep or history of scarlet fever)
5. Association with neurological abnormalities (physical hyperactivity, or unusual, jerky movements that are not in the child’s control)
6. Very abrupt onset or worsening of symptoms

If the symptoms have been present for more than a week, blood tests may be done to document a preceding streptococcal infection.

Are there any other symptoms associated with PANDAS episodes?

Yes. Children with PANDAS often experience one or more of the following symptoms in conjunction with their OCD and/or tics:

1. ADHD symptoms (hyperactivity, inattention, fidgety)
2. Separation anxiety (child is "clingy" and has difficulty separating from his/her caregivers; for example, the child may not want to be in a different room in the house from his or her parents)
3. Mood changes, such as irritability, sadness, emotional lability (tendency to laugh or cry unexpectedly at what might seem the wrong moment)
4. Trouble sleeping, night-time bed-wetting, day-time frequent urination or both
5. Changes in motor skills (e.g. changes in handwriting)
6. Joint pains

What is an episodic course of symptoms?

Children with PANDAS seem to have dramatic ups and downs in the severity of their OCD and/or tics. OCD or tics that are almost always present at a relatively consistent level do not represent an episodic course. Many children with OCD or tics have good days and bad days, or even good weeks and bad weeks. However, children with PANDAS have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement. If children with PANDAS get another strep infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks, but may last for several months or longer.

My child has had strep throat before, and he has tics, OCD, or both. Does that mean he has PANDAS?

No. Many children have OCD and/or tics, and almost all school-aged children get strep throat at some point. In fact, the average grade-school student will have two or three strep throat infections each year.

PANDAS is considered as a diagnosis when there is a very close relationship between the abrupt onset or worsening of OCD and/or tics and a strep infection. If strep is found in conjunction with two or three episodes of OCD, tics, or both, then it may be that the child has PANDAS.

What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child?

The anti-streptococcal antibody titer (amount of molecules in blood that indicate a previous infection) is a test that determines whether the child has had a previous strep infection.

An elevated anti-strep titer means the child has had a strep infection sometime within the past few months, and his or her body created antibodies to fight the strep bacteria.

Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn't matter and elevated titers are not necessarily bad for your child. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection.

When is a strep titer considered to be abnormal, or "elevated"?

The lab at National Institutes of Health considers strep titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200. Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done– just ask where they draw the line between negative or positive titers.

What if my child’s doctor does not understand or does not want to consider PANDAS?

Please note: NIMH does not evaluate the professional qualifications and competence of individual health care providers listed on these websites. The resources are provided for general informational purposes only. NIMH does not intend to provide specific medical advice on its websites, but rather to help visitors better understand mental health and disorders. NIMH will not provide specific medical advice and urges you to consult with a qualified mental health or health care provider for diagnosis and for answers to your personal questions.

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