Help! I Think I Have PANS

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 PANS/PANDAS with antibiotics and/or oral steroids alone, which a local PCP can prescribe.  It can take some persistence and insistence to get them to listen, but bringing them some scientific studies and journal articles on PANS can help.

For those for whom treating the infections on their own is not enough, they may 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––even better if they’re on board enough to prescribe antibiotics or a steroid burst when needed.  Once you get the basic tests from a local doctor, you’ll be able to bring them to a specialist if you end up needing one.  Your specialist may want additional tests, but it can expedite the process if you have the basic ones in hand already.

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.

 

Informational Websites

PANDAS Physicians Network

Moleculera Labs

PANDAS Network

Autoimmune Encephalitis Alliance

Recognizing Autoimmune Neuropsychiatric Disorders

What Is PANS?

 

PANS/AE Specialists

PANDAS Physicians Network Practitioner Directory

Leading PANDAS Physicians

Autoimmune Encephalitis Alliance Doctors

 

Testing/Evaluation Guidelines

PANS Guidelines

Autoimmune Encephalitis Guidelines

 

PANS Treatment Guidelines

https://www.liebertpub.com/doi/pdf/10.1089/cap.2016.0148

 

Scientific Papers:

IVIG Therapy in PANDAS: Analysis of Current Literature:

https://www.elynsgroup.com/journal/article/ivig-therapy-in-pandas-analysis-of-the-current-literature

Baseline Immunoglobulin Levels Predict Achievement of Remission in PANS:

https://www.elynsgroup.com/journal/article/pandas-baseline-immunoglobulin-levels-predict-achievement-of-remission-at-one-year-following-ivig-therapy

Autoimmune Encephalitis – Current Knowledge (Mentions PANDAS):

http://pandasnetwork.org/wp-content/uploads/2013/07/Autoimmune_encephalitis.pdf 

Neuroinflammation and Psychiatric Illness:

https://jneuroinflammation.biomedcentral.com/articles/10.1186/1742-2094-10-43 

The Mild Encephalitis Hypothesis of Psychiatric Disorders (Abstract):

https://www.sciencedirect.com/science/article/pii/S0941950013000109

Red Flags: Clinical Signs for Identifying Autoimmune Encephalitis in Psychiatric Patients

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5311041/

Autoimmune Encephalitis: A Case Series and Comprehensive Review of the Literature

https://academic.oup.com/qjmed/article/104/11/921/1563094

Some Notes on Insurance

Appealing an Insurance Denial (for IVIG, Rituxan, Plasmapheresis, etc.)

I will warn you that 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:

  1. If you have low immunoglobulin levels, insurance is likely to pay for IVIG.  If this is the case, you have the possibility of using an immune deficiency diagnosis to get approved since IVIG is the standard of care for immune deficiencies.  They’ll likely ask for documentation of frequent infections and a vaccine challenge.  Sometimes you can avoid the vaccine challenge requirement if your doctor states that it is contraindicated for you.
  2. In general, you should avoid saying PANS/PANDAS ANYWHERE in the documents you submit to insurance.  Most of us use G04.81 (other encephalitis or encephalomyelitis) because PANS is a kind of encephalitis.  Many companies explicitly say they won’t cover IVIG for PANS on the false assumption that it’s “experimental.”  However, there are also some states that require insurance to cover IVIG for PANS/PANDAS, so do your research.  If your insurance company hasn’t blacklisted PANS/PANDAS but IVIG coverage isn’t mandated in your state, you may also be able to get it covered if you can prove conservative treatments for PANS/PANDAS weren’t enough.
  3. The most efficient way to get IVIG approved is for your doctor to get on the phone and do a Peer-to-Peer with a doctor from your insurance company.  They will go to bat for you and explain why the treatment is necessary.  Be sure you’ve also submitted the necessary documentation to your insurance.
  4. 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.
  5. If you’re having trouble getting insurance to cover treatments, 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.
  6. 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!
  7. 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, Accredo, and/or Amerita seem to be the most common.