November 29, 2018
I recently gave a keynote presentation on how stress affects the brain and human behavior and part of that presentation was my own personal story of dealing with my teenage son’s lyme-induced PANS. I asked the audience of 600 if anyone had ever heard of PANS, and there were no hands shown. When I asked if anyone had heard of PANDAS, a gentleman said, “Yeah – the bear.” To which I replied, “Yes, a rabid bear.”
If you have a child with PANS or PANDAS or autoimmune encephalitis (AE), you know that my attempt at humor there was not really too far off in terms of how it feels. It is isolating, confusing, confounding, often times dangerous, and you become marginalized because it feels as though no one else even remotely understands what you and your child’s lives have become—including the medical professionals who are part of your established network of care. We live in a constant state of survival, trying to figure a way out of this situation that most closely resembles hell.
Thankfully, there is a new book available to help parents and caregivers find a path toward healing when they are faced with these conditions. Brain Under Attack: A Resource for Parents and Caregivers of Children with PANS, PANDAS, and Autoimmune Encephalitis, by Beth Lambert, Maria Rickert Hong, and others from Epidemic Answers, should be in the hands not only of parents dealing with these conditions but also every medical practitioner who treats children. And we should also add to that list: teachers, paraprofessionals, family members, and neighbors.
This book contains quite a bit of information about the science of what PANS/PANDAS/AE is, but it does so in an easy-to-understand way. It’s a very complicated condition, one that manifests in thousands of different ways; yet the authors do a fine job of distilling the most pertinent information so the reader can understand easily how this condition develops, what it “looks like” behaviorally, and how to proceed with finding resources to help the healing process.
The book contains stories from families who have healed from PANS, a four-step healing plan that focuses on the foundations (which will be helpful for the entire family), information about adjunctive treatments that might be helpful, the importance of healing emotionally—for the entire family, and some experienced and well-versed practitioners offer their best advice for parents who are needing guidance.
There is mention of the co-morbidity of autism and PANS, but there isn’t much focus on that subset. This book is most helpful for those who have NT (neurotypical) children who suddenly “go mad.” For those of us with children with autism and PANS (or maybe it’s more appropriate to call it PANS-induced autism), there is still solid help in this book, but you’ll have to be creative about certain aspects of the healing plan. For instance, cognitive behavioral therapy and other “talk therapies” are mentioned often, which is great for people who can—talk and communicate traditionally. I know in my son’s case, I’ve had to work on remediating his brain damage in more creative ways. Don’t let that dissuade you from including this book in your collection, however. I love that it focuses on the foundations and that it also highlights the importance of caregiver self care. PANS has no patience for martyrs. You MUST take care of yourself while you work to heal your child and depending on your child’s manifestations of this condition, healing could take a very, very long time.
There is no magic bullet, and the authors do a great job at emphasizing that. I’m so appreciative that more and more publications are recognizing that healing our children must be done in layers and from many different angles.
Epidemic Answers is on the forefront for bringing this information to the mainstream and assisting parents who are desperately needing direction and answers. And guess what? Epidemic Answers was founded and is run by parents. Just like us. Just like you. Together we will find a way to heal our children.
You can purchase your copy of Brain Under Attack on Amazon.
Raven, a.k.a. Amy Yardley, makes her home in the Inland Pacific Northwest and is co-owner of Navigate Your Healing, LLC, with her business partner Dr. Amy Spoelstra, DC.