When a sudden, inexplicable illness affects a child’s health, getting an accurate diagnosis, proper treatment and support can make all the difference. This has proven to be especially true in the case of two complex, related syndromes known as Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS). Since 2012, child and adolescent psychiatrist Kiki Chang, MD, and pediatric rheumatologist Jennifer Frankovich, MD, have been evaluating and treating children in our PANS service. Here they describe these syndromes and offer some helpful insights.
What are PANS and PANDAS?
PANS is a clinical diagnosis given to children who have a dramatic – almost overnight – onset of neuropsychiatric symptoms including Obsessive Compulsive Disorder (OCD) and/or eating disorder. Children may become moody, irritable and anxious and have difficulty with schoolwork. The cause of PANS is unknown in most cases but is thought to be triggered by infections, metabolic disturbances, and other inflammatory reactions. Like PANS, children with PANDAS have an acute onset – within 2 to 3 days – of neuropsychiatric symptoms, specifically OCD and/or tics (involuntary, purposeless movements). However, PANDAS patients test positive for a known trigger, such as strep throat, peri-anal strep or scarlet fever. Like PANS patients, they also suffer from uncontrollable emotions, irritability, anxiety and poor academic performance and handwriting skills. To date, PANDAS is the only known subset of PANS, but we may discover more in the future.
How do children get PANS/PANDAS?
We believe children who contract PANS or PANDAS have a genetic predisposition for these syndromes, which are triggered by an environmental stressor, often an infection. With PANS, that trigger is unknown. PANDAS is thought to be triggered by a Streptococcal infection and also can be caused by other illnesses. Blood tests conducted on children with PANS show the presence of particular antibodies—protein molecules that the body uses to fight off illnesses. We carefully examine the results in context of each child’s illness.
How common is PANS/PANDAS?
There hasn’t been a large population study on the incidence of PANS or PANDAS, so we don’t know how common they are. PANS and PANDAS are often overlooked by primary care doctors because of the assumption that there is not an underlying medical cause for the patient’s psychiatric symptoms. We see four to six PANS patients each week in our PANS service.
How is PANS/PANDAS treated?
A child diagnosed with PANS or PANDAS is usually first put on the same types of antibiotics that are used to treat strep infections. Antibiotics can dramatically improve many patients’ neuropsychiatric disorders. Once treated, the symptoms that came on overnight can stop almost as quickly. Other children with the disorders may not respond as readily and will have to take a longer course of antibiotics, anti-inflammatory drugs, steroids and other treatments, as well as undergo psychiatric treatment (medications and psychotherapy).
How are Stanford Children’s Health experts leading efforts to learn more about PANS and PANDAS through research and clinical care?
Lucile Packard Children’s Hospital Stanford was the first public institution to start a PANS service in 2012. We hosted the first national PANS conference in the spring of 2013 where we worked to create clear diagnostic guidelines. The second conference will be held at the National Institutes for Health in May 2014, at which we will work on treatment guidelines. We also hold weekly conference calls with PANS/PANDAS experts from across the country to discuss diagnostic dilemmas, treatments and how to move forward with research.
What should I do if I think my child has PANS or PANDAS?
Parents whose child has a dramatic onset of OCD, suddenly restricts their food intake, exhibits tics and/or is also experiencing sudden severe neuropsychiatric conditions – anxiety, irritability, uncontrolled emotions, and/or depression – should first have their pediatrician test their child for strep, both a throat strep culture and a peri-anal rapid strep test. If the rapid strep is negative, ask for a strep culture. If any of these tests are positive, the child needs to be put on antibiotics for strep. If strep is negative, the child should have blood tests for strep. If the child has had or been exposed to an illness with prolonged coughing, then your pediatrician may consider testing for a bacteria called mycoplasma.
What is the prognosis for a child with PANS/PANDAS?
For children who are diagnosed early and a cause has been identified, the prognosis can be very good. Some patients respond quickly and are back to 100 percent normal function, but that doesn’t happen for everybody. For those in whom the cause is unknown and who don’t respond as well to antibiotics, we continue to treat the children and work with their families to address their illnesses.
Contact our PANS service by calling (650) 497-9063 or by emailing firstname.lastname@example.org. For more information, visit our website.
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