PANS and PANDAS are conditions that can be treated by several different types of doctors. If you are wondering what type of doctor to see, the answer is that it depends on the symptoms and severity of the condition.
The good news is that there are a variety of specialists who can provide treatment. The bad news is that many doctors still feel like PANS/PANDAS is not a real condition. You may just get a sideways look or all-out gaslighting. If this happens, just walk away. No need to waste time and money there.
Many doctors who need to take extra time to treat complex patients also don’t take insurance. But this is where networking with your local groups can be extremely helpful.
Here’s a look at some of the most common types of doctors who treat PANS and PANDAS.
But first… If you are just looking for provider lists, here you go:
PANS/PANDAS Provider Lists
If you are looking for a provider to diagnose or treat PANS or PANDAS, there are four organizations that provide practitioner lists. They are:
- Aspire – send an email to get the updated list.
- Neuroimmune Foundation – send an email to get the updated list.
- PANDAS Network
- PANDAS Physicians Network
Primary Care Physicians and Pediatricians
These providers are the first line of defense when it comes to treating PANS and PANDAS. PCPs and pediatricians can diagnose and treat mild cases of PANDAS. They are also the easiest and quickest to get an appointment when the first symptoms appear. Remember, it typically starts with some type of illness like strep, or a viral infection. You may have already been to the doctor. Then one day your child wakes up and seems like a different person. These providers should know your child and can see a change. The sooner treatment starts, the best chance of early recovery. They can also provide referrals to specialists if necessary.
Immunologists and Rheumatologists
These are doctors who specialize in the treatment of conditions affecting the immune system. Immunological conditions can often be comorbid with PANS and PANDAS. Many of their treatments include medicines that decrease inflammation or help the immune system. They frequently recommend IVIG for more severe or treatment resistant cases.
Neurologists
Neurologists are doctors who specialize in the treatment of conditions affecting the nervous system. Neurological conditions can often be comorbid with PANS and PANDAS. But neurologists can also rule out other conditions that may have similar symptoms. Those that specialize in PANS and PANDAS often treat more severe cases.
Psychiatrists, Psychologists, and Therapists
These types of providers are mental health professionals who specialize in the assessment and treatment of mental health disorders. Treatments they often provide include medicines, developmental testing, and talk therapy, which can be beneficial in managing behaviors and comorbid mood disorders that are most often a part of PANS and PANDAS, but they aren’t generally the provider who treats the primary disorder.
Other Resources
Another great resource about potential providers is available on Facebook. There are many private group pages about PANS and PANDAS. Just go to Facebook and do a few searches. Be sure to do a search by regions such as your state and the nearest metropolitan areas. Other parents can tell you who is worth seeing and who is not.
Many of these doctors have long waiting lists, so be sure to get started as soon as you decide to pursue a diagnosis or treatment. Very few take insurance because it limits the time they can spend with each person. But there are a few out there who do take insurance! Most will provide you with a superbill to send to the insurance company yourself for out-of-network benefits. Also, remember that you can use any HSA or FSA funds to cover the expenses.
While you wait
It might be helpful to get some of the preliminary labs and testing completed prior to the appointment with the specialist. Time is of the essence! Being proactive can really speed up the process. When making the first appointment, ask their office what labs your pediatrician can do ahead of time. If your primary care physician has already suspected the PANS/PANDAS diagnosis, then they may be willing to do it. Here is a link to a list of common labs to aid in the diagnosis of PANS/PANDAS.
Being proactive helps save precious time if more aggressive treatment is needed. And most of us in the PANS and PANDAS world have learned to do the research and be prepared!
