For those of you who are just beginning to look into PANS/PANDAS or autoimmune encephalitis, it can be overwhelming figuring out where to start. I’ve compiled a list of helpful websites that explain the illness well, as well as some publications that you can share with your doctors.
There are people who get better from antibiotics and/or oral steroids (or alternative treatments) alone, but for the rest, most end up needing a PANS/AE specialist of some kind to get treatments like IVIG, Rituxan, or plasmapheresis. Unfortunately, these doctors have long waiting lists.
I would suggest, if at all possible, you find someone local who can order PANDAS Physician’s Network’s recommended basic tests to bring to the specialist at your first appointment. Your specialist may want additional tests, but it can expedite the process if you have the basic ones in hand already.
My current treatment team consists of a neurologist (PANS expert), psychiatrist, family doctor, therapist, and a nurse. I’ve also consulted with an immunologist and been treated by an integrative doctor and a Lyme-literate nurse practitioner. Not everyone needs this many clinicians to get better, but it’s not uncommon, either. The good news is if you keep looking, you may be able to find all of these providers locally (except perhaps the PANS expert in cases that need aggressive treatments like IVIG).
Disclaimer: I am not a doctor, and I do not officially endorse any provider or treatment. This page does not constitute medical advice. I make no guarantees on outcomes or insurance coverage. Please consult qualified healthcare providers when making medical decisions.
PANS Treatment Guidelines
Neuroinflammation and Psychiatric Illness:
The Mild Encephalitis Hypothesis of Psychiatric Disorders (Abstract):
Autoimmune Encephalitis – Current Knowledge (Mentions PANDAS):
Red Flags: Clinical Signs for Identifying Autoimmune Encephalitis in Psychiatric Patients
Autoimmune Encephalitis: A Case Series and Comprehensive Review of the Literature
Baseline Immunoglobulin Levels Predict Achievement of Remission in PANS:
IVIG Therapy in PANDAS: Analysis of Current Literature:
Some Notes on Insurance
Unfortunately, most “PANS experts” on the above provider list are out-of-network, meaning insurance won’t pay for the visits. Sometimes you can submit a claim and get reimbursed for at least part of the visit, however. Treatments like IVIG won’t necessarily be covered, either, but you can fight this. I was able to get my monthly IVIG infusions covered at 100%. Some tips:
- If you have low immunoglobulin levels, insurance is likely to pay for IVIG. There are also some states that require insurance to cover IVIG for PANS/PANDAS. You may also be able to get it covered if you can prove conservative treatments weren’t enough.
- If you can prove (with documentation/a letter from a doctor) that no other provider within a certain radius can provide the treatments and expertise you need, they may cover visits to the PANS expert at the in-network rate.
- If you’re having trouble paying for treatment, look into a healthcare advocate. I found mine through exhalehealth.com. They know all of the legalese to say to get the insurance companies to pay up.
- If you have the time (ie the case is not imminently life-threatening), consider checking your insurance’s policies on pre-authorization for treatment. Sometimes you’ll run into trouble later if you don’t wait for pre-authorization before getting a procedure and then you ask them to cover it. Be careful!
- If you’re getting IVIG, Rituxan, or any other infusion medication, be sure your doctor orders them through your in-network infusion pharmacy! This is critical. Sadly, unless you insist and pester them, some doctors’ offices do what’s convenient for them instead of what’s better for you financially, and people end up paying thousands of dollars for treatments that could’ve been covered by insurance. Check with your insurance company which infusion pharmacy you should use. Coram and/or Amerita seem to be the most common.