Tomorrow—October 9—is PANDAS/PANS Awareness Day. Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (PANDAS) includes a little-known set of symptoms that occur when strep creates inflammation in a child’s brain. According to the PANDAS network, the child then “quickly begins to exhibit life-changing symptoms such as OCD [obsessive-compulsive disorder], anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating and more.” PANS—Pediatric Acute-Onset Neuropsychiatric Syndromes— might result from a different bacterial infection, virus or an environmental trigger.
As a pediatric speech-language pathologist, I am thankful for two SLPs in Colorado who will be leading the way to raise awareness at ASHA’s Annual Convention in Denver this year. It’s estimated that PANDAS/PANS affects as many as 1 in 200 children, but because the signs are just a piece of the diagnostic puzzle, it’s possible that the prevalence is higher. Kelly Ward and Jessica Edelstein will present the poster session “Effects of PANDAS/PANS on Communication: What SLPs Need to Know.”
Ward’s interest in PANDAS hit close to home when her son began to experience a sudden onset of symptoms. She explained that his speech was marked by disfluencies, including both cluttering and stuttering, and he had “irrational fears, separation anxiety, OCD symptoms such as incessant questions regarding the size of things and hoarding of objects such as sticks and coins, arm-flapping, eyeblinking and emotional lability.” Ward shared that she’s “passionate about sharing signs and symptoms with educators, parents and therapists—as early detection and treatment is essential!”
Edelstein became intrigued when she heard Ward’s story not long after working with a student who “presented with sudden onset of stuttering and severe separation anxiety, and when referred to the pediatrician, was strep-positive. He’s had a significant decrease in speech dysfluencies since being treated with antibiotics.”
Edelstein now works to spread the word about this small subgroup with other SLPs. She feels that raising awareness about a rare disorder with such dramatic speech and behavioral symptoms will improve diagnosis and treatment for these children.
Feeding challenges are also present in approximately one in five cases of PANDAS/PANS. Feeding therapy is my primary focus as an SLP, so Ward and Edelstein shared the following information with me:
Restricted food intake in PANDAS/PAN may result from OCD symptoms. These can present as fears of choking or vomiting, contamination fears (toxins, germs, cleanliness, too many calories), guilt (not deserving to eat), and sometimes sensory issues. Refusal to eat or drink might also be a compulsion—for example, clients won’t eat out of fear that harm will come to someone else or themselves. Body dysmorphia may develop if the restricted intake continues.
SLPs may see children referred for a swallow study.
Children who stop eating and drinking might need a re-feeding protocol. Olanzapine and exposure-response prevention is effective with certain patients, but treatment protocols vary.
Feeding therapy should take place in conjunction with medical treatment. Medical management may include antibiotics to treat the infection, anti-inflammatories to treat inflammation in the brain, cognitive behavioral therapy and psychotropic medication. Some cases may need intravenous immunoglobulin or plasmapheresis.
I appreciate Ward and Edelstein for leading the way in Denver to help us recognize possible signs of PANDAS/PANS. For more information, follow these links:
Case study on PANDAS and stuttering.
Opportunity for educators, including SLPs, to be involved in PANDAS research.
PANDAS resources for schools.
The PANDAS Physician Network for health care professionals.
Journal of Child and Adolescent Psychopharmacology: Special Issue on PANDAS/PANS.
Have you had a child with PANDAS/PANS on your caseload? Tell us your story in the comments below.
Melanie Potock, MA, CCC-SLP, treats children, birth to teens, who have difficulty eating. She is the co-author of “Raising a Healthy, Happy Eater: A Parent’s Handbook—A Stage by Stage Guide to Setting Your Child on the Path to Adventurous Eating” (Oct. 2015), the author of “Happy Mealtimes with Happy Kids,” and the producer of the award-winning kids’ CD “Dancing in the Kitchen: Songs That Celebrate the Joy of Food!” Melanie@mymunchbug.com