Expert Opinion Article on PANDAS - Obsessive Compulsive ...

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no answers. They are starting to feel crazy themselves, because no one seems to believe what they are going through. If you are a pediatrician or pediatric therapist faced with this family in your office, this may look daunting. However, let’s take a minute to walk through options that are available to parents, medical and mental health professionals, and kids suffering from this disorder. These treatment recommendations were developed from interviewing clinicians and researchers around the country, so that you can potentially stop the disease in its tracks while you referring these children for additional help if needed. What is Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep or PANDAS PANDAS was defined in 1998 by Dr. Sue Swedo. Over the prior decade, Dr. Swedo had been studying Sydenham Chorea where 70% of patients exhibit sudden onset OCD symptoms before or after this classic movement disorder. She and other researchers were finding children who had sudden onset OCD symptoms without the carditis (heart inflammation) or movement disorder normally characteristic of Sydenham Chorea and acute rheumatic fever. Auto-antibodies have been implicated in the carditis of Acute Rheumatic Fever, and Dr. Swedo theorized that perhaps a related set of antibodies were mistakenly attacking the basal ganglia (part of the brain) rather than the intended streptococcal bacteria triggering the movement disorder/sudden onset of OCD. In July 2010, researchers met at the NIH to discuss the past decade of clinical findings. Of significance, the panel found that while strep throat seems to be a trigger, it may not be the only trigger. Sudden onset OCD could be triggered by other diseases, including Lyme, Mono, Mycoplasma and the flu virus (such as H1N1). Based on this and other clinical reports, the panel modified the research definition of PANDAS. How to Identify a PANDAS Child Sudden dramatic onset is the most salient characteristic and differentiates PANDAS from a more frequent pediatric OCD presentation - which involves subclinical symptoms becoming gradually more severe. Incapacitating fears and anxieties seem to come on “overnight” with many parents being able to name the exact day when their child changed. In addition, while the mean age of OCD in children is between 9 and 10 years of age, PANDAS cases can start at a younger age such as 5 or 6, often corresponding with a diagnosis of strep. Physicians are encouraged to assess for: • A history of sore throat, fever, exudative pharyngitis, cervical adenopathy (enlarged and tender lymph nodes in the neck), enlarged or damaged tonsils • Atypical presentations of strep, especially in young children, include abdominal pain and vomiting, vaginal or perianal redness International OCD Foundation - PO Box 961029, Boston, MA 02196 www.ocfoundation.org | Phone: 617-973-5801 | Fax: 617-973-5803
• In some cases of PANDAS, the strep appeared to be “hiding” in the sinuses or middle ear resulting in a negative throat culture • It is also possible that non-strep organisms can cause a similar neuropsychiatric illness in vulnerable children. Therefore, it is important to check for mycoplasma, mono, or exposure to Lyme disease. During the meeting at NIH last year, researchers and clinicians across the country began to revise the criteria defining this illness in children. Based on that conference, because there are non-strep causes of sudden onset illness, researchers changed the name of the disease to PANS: Pediatric Acute-Onset Neuropsychiatric Syndrome. Mental and medical professionals should look for: • Abrupt, dramatic onset of OCD is the first diagnostic criterion for PANS. For those familiar with the CYBOCS (Childhood Yale Brown Obsessive Compulsive Scale) scores, some clinicians look for an increase in total score of more than 16 in the course of a few days. Children may have mild “quirks” or even some signs of OCD prior to this abrupt dramatic onset. In retrospect some clinicians suggest that mild micro-episodes may even have occurred in the past. However, in the space of a few days, they “fall off a cliff”, dramatically causing a significant decrease in the child’s ability to function. Impairment is significant. Parents can usually name the day that the crisis occurred and have vivid memories of the first obsessions or compulsions because of their extreme nature. As an example, a normally joyful, balanced emotionally, independent, social child may turn into a child that has extreme temper tantrums that are out of character, and can no longer leave a parent’s side without accommodation. Panic attacks and unusual anxieties are not uncommon. In addition to the typical obsessional fears and compulsive behaviors, this criterion also may be satisfied by the sudden severe onset of food avoidance, anorexia and eating restrictions. Clinically, these occur as solitary symptoms among PANS patients, as well as from complications resulting from obsessional fears of choking, vomiting or of contaminated foods. • Although there appears to be uniformity in the acuity and severity of onset of the co-occurring symptoms, there is great variability in the nature of the symptoms accompanying the OCD. As a result, the second major criterion for PANS is the concurrent acute onset of additional symptoms from at least two of the following seven categories: 1. anxiety (particularly acute separation anxiety and irrational fears) 2. emotional lability and/or depression 3. irritability, aggression and/or oppositional behaviors 4. behavioral (developmental) regression 5. sudden deterioration in school performance 6. sensory or motor abnormalities (particularly dysgraphia/ trouble with handwriting) 7. somatic/physical signs and symptoms International OCD Foundation - PO Box 961029, Boston, MA 02196 www.ocfoundation.org | Phone: 617-973-5801 | Fax: 617-973-5803
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