What if your child suddenly developed obsessive-compulsive disorder (OCD), tics, severe anxiety and hyperactivity? These symptoms could be associated with an autoimmune disorder called PANDAS.
What Is PANDAS?
PANDAS stands for pediatric autoimmune neuropsychiatric disorder associated with Streptococcus. Let’s look at what that means:
- Pediatric. PANDAS occurs in children ages three to about thirteen years old. It is rarely seen in teens.
- Autoimmune. An autoimmune condition is one where your immune system attacks your body by mistake.
- Neuropsychiatric. This is a medical umbrella term that includes disorders involving both the nervous system and the mind.
- Disorder. A disorder is a medical condition when the mind or body isn’t functioning normally.
- Associated with. This term is used in medicine to relate a condition or outcome to another factor; sometimes the relationship is unclear.
- Streptococcus. PANDAS is thought to be triggered by a Streptococcus (Strep) infection. Strep throat or scarlet fever are infections caused by these bacteria.
What Are the Symptoms?
Symptoms of PANDAS appear quite suddenly following a Strep infection. Your child might wake up happy and well-adjusted then by evening have obsessions, compulsions and tics. Some children with PANDAS have severe separation anxiety and don’t want to be away from their parents. Others suddenly become moody, irritable and have trouble sleeping.
What Causes PANDAS?
Pandas has been associated with Strep infection. When a child gets a Strep infection, the body produces antibodies to fight the invading bacteria. Children develop PANDAS when the immune response goes awry. The antibodies somehow get misdirected and end up reacting with the part of the brain that is involved in controlling movement and behavior. This is what causes neuropsychiatric symptoms like OCD and tics.
How Do I Know if My Child Has PANDAS?
If you suspect that your child has PANDAS, choose a medical provider carefully. One survey reports that it took an average of three years and visits to twelve medical providers for a child to get a diagnosis of PANDAS or its broader diagnostic category. Look for providers trained in PANDAS, which may include allergists, rheumatologists or infectious disease specialists.
There are no lab tests to diagnose PANDAS. Providers must evaluate clinical symptoms. According to the National Institute of Mental Health, some diagnostic criteria are
- Presence of OCD, tics or both
- Neurological abnormalities that the child can’t control, such as hyperactivity or jerky movements
- Positive test for Strep infection or history of Strep infection
- Abrupt symptoms—they appear “out of the blue” or existing conditions get worse very quickly
How Is PANDAS Treated?
PANDAS can be devasting for both the child and the parents. Parents need support and education to manage their child’s behavioral issues and to find effective treatment.
Treatment should be individualized to your child’s symptoms and behavioral needs. Medicines may include antibiotics to fight underlying Strep infection. Anti-inflammatories may be prescribed to calm the immune system. Antidepressants for management of OCD or depression may be dangerous for children with PANDAS so should be used with caution. More extreme treatments are available for children whose symptoms are so severe that they can’t function.
Behavioral therapy for the child can help with OCD fears, anxiety, depression and other behavioral challenges. Individual therapy for the parents and family therapy can make a big difference in everyone’s quality of life. (See the sidebar Resources for Parents to learn how to build a support system.)
RESOURCES FOR PARENTS
The PANDAS Physicians Network
www.pandasppn.org/aap/ website includes a practitioner directory to help you find a trained provider.
Texas Pediatric Acute-Onset Neuropsychiatric Syndrome Advisory Council (2021 Report on PANS and PANDAS in Texas) www.hhs.texas.gov/sites/default/files/documents/laws-regulations/reports-presentations/2021/pansac-report-sept-2021.pdf
Psychology Center of Austin website. Pediatric Autoimmune Encephalopathies webpage www.psychologycenterofaustin.com/pandas-and-pans.html provides counseling treatment recommendations as well as links to books, websites, PANDA friendly providers, psychiatrists, and therapists.
Facebook Support Groups
Austin PANDAS/PANS
Symptoms Associated with PANDAS
The National Institute of Mental Health (HIMH) lists the following symptoms that children with PANDAS can experience (in addition to OCD or tic disorder):
- Mood changes, such as being irritable, sad or responding inappropriately
- Attention deficit hyperactivity disorder (ADHD)
- Separation anxiety
- Trouble going to sleep or sleeping through the night
- Bed wetting at night or frequent trips to the bathroom during the day
- Changes in motor skills
- Joint pain
Source: National Institute of Mental Health. PANDAS—Questions and Answers. www.nimh.nih.gov/health/publications/pandas
Brenda Schoolfield is a medical writer and editor who lives in Austin. Sugar, her cocker spaniel and sometimes a rescue foster dog or two keep her company while she writes.
