PANS + Lyme: Recovery and 8 Years of Misdiagnoses

Resources

If you’re just beginning to suspect that you or your child has PANDAS or PANS, it can be difficult to find support as well as accurate information about the disorder.  On this page, I’ve assembled a list of some of the most useful links I’ve come across.

Medical Information

PANDAS Network – PANDAS Information

National Institute of Mental Health – Information About PANDAS

Moleculera Labs – PANDAS And PANS – Overview

Dr. Latimer, video: “PANDAS: One Size Does Not Fit All”

Find a PANS/PANDAS Doctor

PANDAS Network: Leading PANDAS Physicians

If you think you or your child might have PANS or PANDAS, it’s very important that you find a doctor who knows how to treat it.  With many doctors, if you bring up the subject, they will simply tell you that PANDAS is “controversial and not well understood,” and they will send you on your way.  Some doctors may feel threatened by the idea that some cases of mental illness can be cured with immune-based treatment.  It’s true that there isn’t enough research on the disease, but there are treatments available today that have helped many people.  The doctors in the link above are considered experts in the condition.

Blogs about PANS/PANDAS

Sheep in a Jeep

This blog is written by a 27-year-old with PANS and severe OCD and describes her journey to recovery after years of struggling with mental illness and being undiagnosed.

Bearing PANDAS

Written by a 16-year-old girl living with PANDAS and Lyme, this was the first blog besides mine that I found written from the perspective of a PANDAS patient.

PANDAS Sucks

Written by a mom of a boy with PANDAS, PANDAS Sucks is a great blog about dealing with the disorder from the parents’ perspective.  She also regularly has guest posters and invites readers to share why they think PANDAS sucks.

PANS Life

Perhaps one of the oldest blogs about life with PANS, PANS Life is written by the mom of two children with PANS and Lyme.  It provides a true glimpse of what life can be like in a PANDAS/PANS family, and it links to many great resources as well.

The PANDAS Puzzle

The PANDAS Puzzle is written by the mother of a six-year-old with PANDAS and Lyme.  The site not only shares the journey of the family through solving the puzzle that is PANDAS, but the author also posts healthy, kid-friendly recipes.

 

Other Useful Sites

Empowered Hands for PANS

A charity founded by a patient and for patients, Empowered Hands for PANS provides care packages and support for children receiving IVIG treatment.

ACN Latitudes PANDAS/PANS Online Forum

If there are no PANDAS support groups in your area, this is a great place to meet others dealing with the disorder and share information.

Autoimmune Encephalitis Alliance

Although PANDAS and PANS are not yet accepted by mainstream doctors as a form of Autoimmune Encephalitis, PANDAS experts do consider the conditions to be related, and PANS and AE often use the same treatments.  The AE Alliance site provides information about treatments as well as useful publications and support resources.

International OCD Foundation

As important as it is to treat the underlying cause of PANDAS/PANS, it is also crucial to address the OCD symptoms directly through CBT and perhaps other therapies.  Learn more about Obsessive-Compulsive Disorder here.

National Eating Disorders Association

Eating disorders are often one of the main symptoms of PANS.  While medical treatment to address the autoimmune cause of PANS eating disorders is essential, NEDA provides resources and support for families for dealing with symptoms in the meantime.

 

Know of any other good resources that I’ve missed?  Visit my contact page and let me know!

 

Comments on: "Resources" (2)

  1. Kristen said:

    Hi,

    I have had SEVERE pure OCD for 26 years which started when I was 11 years old (I am 37 now). My life has been a living hell despite all the treatments (both conventional and alternative) that I have tried to help the OCD. I have always wondered over all these years if I could possibly have “had” and have PANDAS. When I was 11, I had a bad case of strep and I know that my OCD intrusive thoughts started around that time, although I cannot remember if it happened before the OCD started or after. I do and did not have tics or anything else other than EXTREME anxiety and suicidal thoughts related to the unwanted images, urges, and thoughts that were torturing me. I felt like I was crazy and losing my mind. I am wondering if I shoud look into any blood tests to see if I was and am an undiagnosed case of PANDAS. I’m not sure who I would go to. The doctor referral lists seems geared to children only and I don’t know if I would be taken seriously. I live in Indiana. I would be greatful for any suggestions.
    Thanks,
    Kristen

    Like

    • Hi Kristen,

      I’m so sorry you’ve suffered from such severe OCD for so many years. It sounds like PANDAS is worth investigating for you. Even though it’s usually discussed as a pediatric condition, there are adults with PANDAS–and doctors who treat them. Many of the doctors on the list, even some of the ones labeled as “pediatric,” have seen adults who’ve been undiagnosed since childhood, as you may be. I’m sending you an email with more information.

      You’re not crazy. You’re not alone. You’re not hopeless. Hang in there. PANDAS can be treated!

      Like

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