What is PANDAS syndrome?

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PANDAS syndrome is a neurological condition that appears suddenly following a strep infection, such as strep throat. One theory is that it is an autoimmune disorder that causes the body to attack healthy cells.

Researchers think that PANDAS may occur when the body attacks cells in the basal ganglia, a region of the brain responsible for many functions, including learning and movement. The resulting damage could cause the psychiatric symptoms of PANDAS.

PANDAS can cause tics in movement and speech, including syndromes such as Tourette’s syndrome. A child may also develop obsessions and compulsions, such as counting, excessive hand washing, or other unusual rituals.

A potentially related condition called Sydenham chorea appears after rheumatic fever, which is a heart condition that can develop with certain untreated strep infections. Sydenham chorea causes involuntary movements and, sometimes, mental health symptoms.

PANDAS syndrome is a group of symptoms rather than a specific disease. The exact cause of these symptoms is not clear.

Group A Streptococcus bacteria may cause many different infections, including strep throat, certain skin infections, and, if a person does not receive treatment, rheumatic fever. These infections spread by mimicking the healthy cells in the child’s body.

The body eventually recognizes the cells and produces antibodies that kill them. These antibodies may, however, also attack healthy tissue, including that in the brain. In this way, Group A strep could cause PANDAS.

Children with PANDAS may have a genetic predisposition to the syndrome. Environmental stress, such as a strep infection, may then activate the syndrome. Certain people may also have a genetic predisposition to conditions that can trigger the disease, such as rheumatic fever.

Children with PANDAS may have a history of strep infections, such as strep throat. A parent or caregiver might not know that the child has had strep if a doctor did not diagnose it. In this case, they should consider the possibility of PANDAS if a child suddenly develops unusual mental health symptoms, particularly if they have been ill recently.

Some signs to watch for include:

• Motor tics: These are unusual and irregular movements that the child cannot control, such as a twitching eye or sudden arm movements.
• Verbal tics: A child with verbal tics may shout apparently random phrases or nonsense syllables.
• OCD: Those with OCD perform compulsions (unusual rituals, such as counting or cleaning) to ease obsessive thoughts and anxiety.

The symptoms of PANDAS syndrome appear suddenly, rather than developing gradually over time. If a child already has neurological issues, PANDAS may suddenly make those symptoms worse.

Although the above symptoms are the primary criteria, the sudden onset of other symptoms may also occur. These may include:

• hyperactive or inattentive behavior, including symptoms of ADHD
• bed wetting
• trouble with or changes in motor skills, such as handwriting
• separation anxiety inappropriate to the child’s age and development
• moodiness or irritability
• joint pain

The symptoms tend to be episodic, which means that they may come and go. A child might suddenly appear better for many weeks and then get dramatically worse again.

It is important to note that even if a child has tics or OCD, they do not necessarily have PANDAS, even if they have a history of strep infections.

Currently, no lab test can diagnose PANDAS. Instead, doctors rely on the child’s symptoms and medical history.

The doctor will likely test the child’s throat to check for an active strep infection. If the test is negative, the infection could be hiding elsewhere, such as the genitals. The doctor may, therefore, use other tests if the child has or previously had strep symptoms.

Parents or caregivers may need to answer questions about when the symptoms appeared and whether the child has a history of infections. They should tell a doctor about all symptoms and prior infections, even if the doctor does not ask. It is also important to note whether symptoms appeared suddenly or developed over time.

In general, doctors will use the following steps to diagnose PANDAS:

1. They will search for evidence of OCD, tics, or both.
2. The child must meet the age requirement for PANDAS, as symptoms tend to manifest between the ages of 3 years and puberty.
3. The doctors will then search for signs of a strep infection.
4. Finally, they will test for any neurological abnormalities.

The first-line treatment for PANDAS should be antibiotics to kill the Streptococcus bacteria, just as with any strep infection.

If symptoms do not improve with antibiotics, a doctor will recommend managing the tics and OCD with several strategies. These may include:

• Medication: Medication can help ease tics and OCD. Children with PANDAS may be very sensitive to one of the most popular medication options: selective serotonin reuptake inhibitors (SSRI). For this reason, doctors should initially prescribe a very low dosage, increase it gradually, and monitor symptoms on an ongoing basis.
• Therapy: Therapy can help a child manage obsessive or anxious thoughts and develop better coping strategies.
• Experimental therapies: Some evidence suggests that plasma exchange and immunoglobulin therapy may work when other treatments are ineffective. However, these can have significant side effects, and doctors usually only recommend them for very ill children.
• Family support: Family therapy can help prepare family members to support and advocate for the child.
• Disability accommodations: Children with PANDAS may need disability accommodations at school.

Some children with PANDAS also struggle with other infections, such as frequent tonsillitis. However, having PANDAS does not necessarily make a child more likely to have tonsillitis.

Tonsillitis is a different type of infection, and either a virus or strep can cause it. Viral tonsillitis does not usually require the removal of the tonsils, but this procedure may help those with frequently occurring strep-related tonsillitis. It will not improve the symptoms of PANDAS syndrome, though.

If a doctor recommends removing the tonsils because of tonsillitis, parents or caregivers should discuss the risks and benefits with them. They should also consult the doctor who is treating the child’s PANDAS.

Many children respond well to antibiotics, and their symptoms get better or go away.

However, this is not always the case. When antibiotic treatment does not help, the child may need therapy and other ongoing support to manage their symptoms. PANDAS is not a terminal condition, but it can undermine the child’s quality of life.

Doctors consider PANDAS to be a childhood disorder that appears between the ages of 3 and 12 years. While it is possible that an adult or teenager might develop PANDAS, research has not explored this issue in depth. The National Institute of Mental Health argue that it is unlikely that someone would first experience PANDAS symptoms as an adult.

Anecdotal evidence suggests that symptoms may disappear in adulthood. However, long-term studies are virtually nonexistent, so researchers cannot say with certainty how a child’s symptoms might change with time.

PANDAS can be a frustrating condition, especially when doctors do not accurately diagnose a child.

Parents or caregivers who suspect that a child may have PANDAS syndrome should find a pediatrician who specializes in PANDAS, strep infections, or childhood mental health symptoms. They should also do this if a child has behavioral problems alongside frequent strep infections.

PANDAS often gets better, and even when it does not, the symptoms are manageable. With ongoing treatment, disability accommodations, and family support, a child can have a happy, healthy life.