How To Find the Right Doctor for PANDAS
Diagnosing PANDAS can take time, especially when working with providers unfamiliar with the disorder. Continue reading to learn how to find the right doctor who treats PANDAS syndrome.
Parents know the PANDAS journey is challenging, whether they have been walking down this road for weeks, months or even years. If you recently found out about PANDAS/PANS disorder and are hoping to have your child’s symptoms evaluated, you may be intimidated by the thought of discussing it with your primary care provider. After all, shouldn’t your provider have brought up the possibility of PANDAS/PANS in the first place?
Unfortunately, due to the stigma surrounding PANDAS/PANS in the medical community, providers don’t usually consider it a possibility, and it can be difficult to talk to your child’s doctor about PANDAS treatment. Many providers are unaware of the condition or believe some of the common misconceptions about PANDAS/PANS.
PANDAS Network offers resources and support for families affected by PANDAS/PANS. We are here to help answer all of your questions about this misunderstood disorder, including how to find the best doctor to assess your child’s condition.
Doctors who treat PANDAS syndrome come from a variety of backgrounds. Pediatrics, neurology, hematology/oncology, psychology, psychiatry, integrative medicine, immunology and rheumatology are just a few of the specialties of PANDAS doctors. As members of the PANDAS physician network, these healthcare providers have experience with PANDAS disorder and PANDAS treatment. Find help near you by visiting our U.S. physician directory.
There is limited research on PANDAS/PANS, and the condition is widely misunderstood. Healthcare providers may overlook PANDAS/PANS by assuming there is no underlying medical cause for a patient’s psychiatric symptoms. This leads to misdiagnosis and a delay in PANDAS treatment.
Currently, there is not a 100% definitive test for PANDAS/PANS. It is important to work with a doctor familiar with PANDAS disorder to receive the best support for your child. They can make a clinical diagnosis based on the collection of signs, symptoms, medical history and laboratory findings that cannot be explained by any other neurological or medical disorders.
Both PANDAS and PANS diagnoses include the abrupt, pre-pubertal onset of obsessions, compulsions or tics. PANDAS requires an association with strep infection, while PANS has links to other infections like influenza or Lyme disease. Symptoms of PANDAS or PANS include:
- Extreme rage or inability to control anger
- Restrictive eating or avoidance of food
- OCD-like symptoms
- Behavioral abnormalities and personality changes
- Sensory problems, like sensitivity to light and sound
- Academic skill deterioration and mental regression
If you’ve noticed any of these symptoms, you have likely reached out to your family physician for help. However, PANDAS/PANS disorder is notoriously difficult to diagnose and treat. You may have questions about your child’s condition that a family physician cannot answer. As a first step, you can review our parent resources to get some of your PANDAS/PANS questions answered.
Since no single test can confirm a PANDAS diagnosis, parents must work with clinicians familiar with PANDAS/PANS testing and treatment options. To help make a diagnosis, doctors who treat PANDAS or PANS run an initial diagnostic workup to gain additional information about the child’s health. These tests include basic blood work for autoimmune antibodies and vitamins, viral or bacterial testing for strep, Lyme disease and coinfections, and additional testing such as the Cunningham Panel. A printable document that lists basic blood work for PANDAS/PANS is available here.
If you suspect your child has PANDAS or PANS, your family doctor may be able to refer you to a specialist from the PANDAS physician network who can better diagnose and treat your child. However, due to the stigma surrounding the condition, your provider may refuse or insist on an alternate diagnosis. Parents should be ready to research PANDAS disorder and seek out doctors who treat PANDAS/PANS.
We know that finding the doctor who is the right fit for your family is difficult. In the event that your family physician does not have PANDAS resources or referrals to a PANDAS specialist, there is no need to worry. We compiled a directory of doctors who diagnose and treat PANDAS syndrome. The PANDAS physician network is a directory of U.S.-based healthcare professionals who have experience treating patients with PANDAS/PANS. These clinicians have experience working with families like yours and want you to be fully aware of all the treatment options available for your child. For parents and caregivers outside of the U.S., visit our international providers for a list of referrals.
The PANDAS journey is a long and hard road, and it is even more challenging when your healthcare provider dismisses your child’s experience. As a parent of a PANDAS/PANS patient, you are your child’s biggest advocate. If you are still searching for a PANDAS doctor, be sure to check out our directory of physicians. The right doctor will listen to you, validate your child’s experiences and support you as you focus on healing your child—and PANDAS Network is here to equip you with the resources and help you need along the way.