PANDAS and PANS Many parents often enquire about PANDAS/PANS and its possible relevance for some children with autism. We have therefore provided a quick list of resources including general information and background, as well as possible tests and treatments. Unfortunately, the science around these disorders is still in its infancy, and available tests are both very expensive and not always conclusive. To add to that there are very few medical practitioners in the UK or Europe who are familiar with PANDAS/PANS and how to test or treat a patient for it. Unfortunately, very often the only way to rule out PANDAS/PANS is to see a knowledgeable clinician located abroad, including over the Atlantic. We are hopeful that this situation might change in the near future. What is PANDAS/PANS?: First identified in the 1980s by Dr. S. Swedo, PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. More recently, another acronym was introduced — PANS is short for pediatric acute-‐onset neuropsychiatric syndrome, referring to cases where any bacterial or viral infection, not just strep, can be a trigger. Symptoms: A number of factors are considered in making a diagnosis, but generally children will exhibit the following: • Presence of clinically significant obsessions, compulsions and/or tics • Unusually abrupt onset of symptoms or a relapsing-‐remitting course of symptom severity. Children with PANDAS often experience one or more of the following symptoms in conjunction with their OCD and/or tics: • • • • • • •
ADHD symptoms (hyperactivity, inattention, fidgety) Abnormal movements Sensitivity to light and sound concentration and learning difficulties emotional swings / mood changes (irritability, sadness, emotional liability) frequent urination and night-‐time bed wetting heightened anxiety, especially 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/her parents) • developmental regression (using “baby talk” or throwing tantrums). • Fine/gross motor changes (e.g. changes in handwriting • Joint pains. Treating Autism is a registered charity run by parents and carers of children with autism. The information on this flyer is for general purposes only and should not be construed as medical advice nor as an endorsement of any particular products, interventions or their providers. Treating Autism does not take any responsibility or liability for any decision taken as a result of the information contained herein or the external links provided. If you need medical advice, please seek it from a suitably qualified practitioner. www.treatingautism.co.uk
Possible treatments: Treatment varies by the needs of the child, but may include antibiotics, steroids, IVIG (intravenous immunoglobulin), plasmapheresis and anti-‐ inflammatory medications. Gender susceptibility: Boys outnumber girls about 3-‐to-‐1 in PANDAS diagnoses. FURTHER READING AND USEFUL LINKS PANDAS: Strep Infection Associated with ADHD and Autism PANDAS is a condition that can occur within a child with a diagnosis of ADHD, autism, Asperger’s syndrome, obsessive compulsive disorder, or tic disorder (such as Tourettes syndrome). It leads to autoimmune-‐mediated inflammation of the brain, and usually occurs after several bouts of Strep throat, but may manifest even if the parent cannot recall a history of Streptococcal infection in their child… Read more here: www.tinyurl.com/zjpv7ng PANDAS and PANS – General information by the National Institute of Health Read more here: www.tinyurl.com/qy3kum3 Testing for PANDAS/PANS -‐ The Cunningham Panel Overview The Cunningham Panel™ can help identify the level of autoimmune antibodies associated with Neuropsychiatric Disorders and the capability they have to stimulate and trigger neurologic behavior. Elevated levels of these antibodies indicate that a child’s symptoms may be due to an infection-‐induced autoimmune response. Detailed information on these diagnostic tests is available here: www.tinyurl.com/hous6r7 Wieslab PANDAS/PANS Clinical Laboratory Testing A Swedish lab offering The Cunningham Diagnostic Panel to European patients (only clinicians can order tests). Links here (www.pandas-‐pans.com/q-‐and-‐a), and here (www.tinyurl.com/jgvprz3) including detailed information on interpreting test results.
Treating Autism is a registered charity run by parents and carers of children with autism. The information on this flyer is for general purposes only and should not be construed as medical advice nor as an endorsement of any particular products, interventions or their providers. Treating Autism does not take any responsibility or liability for any decision taken as a result of the information contained herein or the external links provided. If you need medical advice, please seek it from a suitably qualified practitioner. www.treatingautism.co.uk