PANS PANDAS & Eating Disorders/Food Restrictions/Avoidance
If your child has new or suddenly increased food avoidance or eating restriction along with other behavior, neurological or cognitive changes, it might be due to PANS/PANDAS. Food restrictions and OCD are the two top tier symptoms of PANS. For more information on PANS PANDAS Symptoms.
The attached packet includes an awareness flyer (available to download in poster sizes) and information about relevant studies on PANS PANDAS and food restrictions. Several ASPIRE PANS PANDAS fliers are available for you to print in three sizes, one letter-size paper, and two poster sizes. The .pdf version below is an 8.5×11 paper size.
If you would like the 11×14 or 16×20 poster version for you to download and print for an event, please contact Gabriella True directly so we can know about your event and help promote it. Share directly from this page or download it to email or print.
The reasons for the disordered eating in PANS PANDAS patients varies from patient to patient.
We see many cases of ARFID “Avoidant and restrictive food intake disorder (ARFID) and Body Dysmorphia. For many, food restrictions are firmly rooted in OCD, a primary PP symptom; there are often fears of contamination, vomiting, choking. Another symptom of PANS PANDAS is sensory processing issues; this can affect eating due to swallowing and texture issues. PANS PANDAS patients can also have distorted body image. This can happen especially in patients who have PANS PANDAS for several years, so it is seen more often in older patients, but it can happen in younger patients.
Much more awareness of eating disorders resulting from PANS/PANDAS needs to happen so that proper diagnosis and treatment be prescribed. Remember, treating PANS/PANDAS is a three-pronged approach: 1) remove the source of inflammation, 2) treat dysregulated immune system and inflammation 3)treat the symptoms. If PANS patients with eating disorders are not diagnosed correctly, then there is no way they are receiving all three facets of the diagnostic guidelines; only implementing psycho-therapeutic interventions will not be enough for lasting recovery.
Studies on Eating Disorder, Food Avoidance, Restricted Eating, and PANS PANDAS
PANS PANDAS Children with Food Restrictions and Disordered Eating (Toufexis Study)
Study: Disordered Eating and Food Restrictions in Children with PANDAS/PANS. Toufexis, DO, et al. JCAP Vol 25, 2015. DOI:10.1089/cap.2014.0063
“In youth with PANDAS, food restriction has been reported to occur in the context of obsessional fears about contamination, as well as in the context of the sudden onset of fears of swallowing, choking, or vomiting that are often associated with sensory phenomena (e.g., the perceived texture or appearance of the food.”
The children in the Toufexis study met the criteria for ARFID. Most “had a paralyzing fear of some adverse consequence of eating normally,” believing they would vomit or choke, and the food was contaminated. The three children, who expressed concerns about “getting fat” or body image, developed those thoughts later.
What is ARFID? “Avoidant and restrictive food intake disorder (ARFID) is a diagnosis in Diagnostic and Statistical Manual of Mental Disorders, 5th ed. (DSM-V) (American Psychiatric Association 2013). Like other DSM-V disorders, the diagnostic criteria for ARFID describe a specific clinical presentation, without regard for etiology, response to treatment, comorbid symptoms, or even acuity of onset.” – Toufexis
Use of IVIG for PANS PANDAS
Study: Use of Intravenous Immunoglobulin in the Treatment of Twelve Youths with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. Miro Kovacevic, MD, Paul Grant, MD, and Susan E. Swedo, MD – JCAP Vol 25, No 1, 2015 – DOI: 10.1089/cap.2014.0067
Abstract: “This is a case series describing 12 youths treated with intravenous immunoglobulin (IVIG) for pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection (PANDAS). Although it is a clinically based series, the case reports provide new information about the short-term benefits of IVIG therapy, and are the first descriptions of long-term outcome for PANDAS patients.”
Patient A: Patient A was a 7.5-year-old with “initial OCD symptoms included intrusive thoughts, contamination fears (urine, saliva), repetitive compulsive behaviors…, the need to remember what foods she ate looked like, and avoidance of foods she feared she would not remember), and reassurance seeking.” After several treatments including antibiotics, IVIG, steroids and CBT and several relapses, 4 years later she is reportedly doing “very well.” Patient D
Patient D: Patient D was a 9.5-year-old boy who “developed a fear of choking and chronic abdominal pain, and the resultant food refusal led to a 4.5 kg (20%) weight loss, hospitalization, and tube feedings. These symptoms persisted for *1 year prior to his evaluation and treatment.” He was given prednisone, IVIG, and prophylactic antibiotics resulting in full remission for a year at the time of follow up.
Patient G: Patient G was a 9-year-old boy with a history of sudden onset OCD, anxiety, and tics. He later developed more severe sudden onset severe PANS symptoms. “Most significantly, he developed compulsive, recurrent vomiting of all foods and liquids, including water, leading to a 7 kg weight loss. He was diagnosed with postinfectious gastroparesis, and fed exclusively via a nasojejunal tube.” A steroid burst brought temporary improvements. IVIG created dramatic improvement, which allowed him to resume normal food intake orally and the removal of his nasojejunal tube. He did have some residual vomiting, which did not result in weight loss but did interfere with normal life. The second round of IVIG resulted in complete remission. He was still in remission at three-year follow-up.
Patient L: Patient L was an 8-year-old boy who along with OCD and other PANS symptoms had “a number of ill-defined abdominal complaints that prompted a gastroenterological evaluation (with negative results) and that eventually led to the patient’s complete refusal to eat. The patient lost nearly 25% of his body weight (declining from 22 kg to 17 kg) and was hospitalized numerous times for tube feedings and psychiatric interventions.” Several SSRI’s showed no benefit. Amoxicillin provided a small improvement in symptoms and allowed for stabilization in weight loss. Steroids and IVIG created remarkable improvements and the patient “was able to visit a restaurant (a previously unacceptable venue) and to eat a meal without difficulty.” A second round of IVIG was needed after progress stalled and since recovery has held firm.
Case Study of a Child with Anorexia Nervosa and PANS PANDAS
Study: Clinical Case Rounds in Child and Adolescent Psychiatry: Certain Eating Disorders May Be a Neuropsychiatric Manifestation of PANDAS: Case Report. Cynthia V. Calkin MD; Carlo G. Carandang MD, ABPN (Dip) J Can Acad Child. Adolesc Psychiatry. 2007 Aug; 16(3): 132–135. PMID: 18421369
This case report describes an eight-year-old with PANDAS, OCD, Anorexia Nervosa (AN). “The OCD symptoms were not confined to the Eating Disorder (ED) and the ED symptoms were not exclusively OCD-based.” “This case suggests that EDs, in some cases, maybe an autoimmune-mediated neuropsychiatric manifestation or a clinical sub-type of PANDAS. The patient in our case rapidly recovered from his ED and OCD. Perhaps by considering the proposed pathophysiology of PANDAS and by targeting the management of future GABHS infections, the usual course of EDs and OCD could be altered in patients believed to have an autoimmune etiology.”
Prevalence of PANS in Child and Adolescent Eating Disorders
- The surprisingly high lifetime PANS rate of 52% within pediatric ED was higher than that previously reported for OCD populations. The large majority had an abrupt onset of parent-reported OC symptoms as well as abrupt food restriction.
- Those in the PANS group were more likely to be female, be prescribed an SSRI, and have parent-reported abrupt OC symptom onset, abrupt food refusal, relapsing and remitting course, and concurrent anxiety, depression, irritability or aggression, behavioral regression, school deterioration, and sleep problems, enuresis, and/or frequent urination.
- This appears to be a distinct subgroup that requires further characterization with respect to functional impacts and management approaches.”