FAQ

PANDAS, which is specifically associated with Group A beta-hemolytic Streptococcus (GABS) infection, is a subset of the more broader clinical term, PANS. The most common GABS infection is in the pharynx, aka “Strep Throat”, but is can also skin infections, sinus infections, and even infections in the perianal and vaginal region of children. GABS infection is the most commonly identified pathogen under the broader definition of PANS, but by no means the only one. Other infectious triggers of PANS include Mycoplasma pneumonia (a common cause of respiratory infections such as bronchitis and walking pneumonia), influenza, and possibly some of the Borrelia species (the cause of Lyme Disease). There are also non-infectious causes, such as Lupus and other autoimmune conditions, and even metabolic disorders.

When parents ask this question what they really want to know is “what tests are you going to run on my child.”   But before any tests can be ordered a detailed history and physical exam must be obtained. Based on findings from the history and physical, specific tests can then be ordered.  Most often the first test performed will be a rapid strep test with a backup sent for throat culture if the results are negative.  Nasal and even anal swabs for strep may be necessary If strep is suspected in these areas.  General bloodwork to assess the health of the immune system and to look for recent evidence of strep or other infection is usually obtained.  For children with moderate to severe symptoms a specific blood test called the Cunningham Panel may be ordered, although parents must pay out of pocket for this and it is quite expensive.  Children with severe symptoms may also require an MRI, an EEG, a sleep study, and sometimes a spinal tap. All of these would be scheduled through a pediatric tertiary care center such as Children’s in Dallas or Cook Children’s in Ft. Worth.  For more specific diagnostic criteria visit the PPN Diagnostic Guidelines.

The recommended treatment is three-pronged: 1)  If an infectious trigger is identified or highly suspected then the infection is treated with an appropriate antibiotic.  Sometimes prophylactic antibiotics are required if symptoms become recurrent.  2)  Inflammation, which accompanies both infectious and non-infectious causes, must be treated. Inflammation is a primary driver of both symptom severity and recurrence. Steroids and non-steroidal anti-inflammatory agents have both been used successfully for this.  When antibiotics and steroids are insufficient to control symptoms then IVIG or plasmapheresis may be considered. 3) Treatment of the neuropsychiatric symptoms is also essential, which may include medication, cognitive-behavioral therapy, or a combination of both. Referral to a mental health provider is recommended at the time of diagnosis. Although the child will not be able to participate in therapy successfully during the acute phase of a PANS/PANDAS flare, his or her parents can benefit immediately by learning how to address specific behaviors in the home so as not to reinforce them, and once the acute flare has subsided the child can begin to participate successfully.

My personal interest began 4 years ago when a nephew developed symptoms of PANDAS, and I saw what my sister and brother-in-law went through in order to obtain the appropriate diagnosis and treatment.  With too few available providers and long wait lists to get in, his diagnosis and treatment were unnecessarily delayed, which is too often the case.  During this time I started to see some cases in my own practice.  In order to provide the best care for my patients and to be a source of reliable information for my sister, I became determined to learn as much as I could about PANS/PANDAS.  I have learned much through conference attendance and personal study, but have benefited most from the work of others.  Years of research by pioneers in the field, pulling from a variety of specialties and institutions has recently been brought together and distilled into “best practice guidelines” by the PANS/PANDAS Research Consortium. The PANS/PANDAS Treatment Guidelines were published in the November 2017 issue of The Journal of Child and Adolescent Psychopharmacology, and they are also outlined at the PANDAS PHYSICIANS NETWORK website.  My practice philosophy and approach to PANS/PANDAS is based on these guidelines.

Maximum face to face time is essential in order for me to do my job well, hence the 90 minute initial visit and 30-45 min followup appointments.  This limits the number of appointment slots per day, especially since I do not double book.  I cannot delay the next patient while I take care of billing, and I also cannot afford the loss of income a no-show appoint would present with this business model.  No-show appointments also take away potential time slots for other patients.  Studies have show that by paying up front the problem of no-shows is minimized.

When ordering labs and x-rays (for example) I need to know the facilities to use that are covered by your insurance.  In addition, when choosing medications, if possible I try to prescribe medications that are covered by your insurance. Both of these instances minimize your out-of-pocket expenses.