Somewhere in There

By Melissa Nolan

What happens when your child becomes someone you don't recognize? When you watch them go from living a typical life of attending school, playing with friends and enjoying activities to becoming overwhelmed with debilitating psychiatric, cognitive and physical symptoms? What if they were suffering from an

• Language: English
• Publisher: Melissa Nolan
• Release date: Sep 1, 2022
• ISBN: 9781088060315

Book preview

Somewhere in There

Families Living with PANS & PANDAS Share Their Journeys from Despair to Hope

by

Melissa Nolan

Somewhere in There

Families Living with PANS & PANDAS Share Their Journeys from Despair to Hope

Copyright © 2022 by Melissa Nolan

All rights reserved. No part of this book may be used or reproduced in any manner whatsoever (electronic, mechanical, photocopying, recording, or otherwise) without written permission except in the case of brief quotations embodied in critical articles and reviews. Requests for permission should be directed to the author or publisher.

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Please note that the information contained herein is for educational and entertainment purposes only. Every effort has been made to present accurate, current, reliable and complete information. There are no warranties of any kind, stated or implied. Readers acknowledge that the author is not engaged in providing legal, financial, medical or professional advice.

The content of this book is derived from a variety of sources. Consult a licensed professional before using techniques described in this book.

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ISBN: 979-8-218-00839-0 (trade paperback)

First trade paperback edition: September 2022

Dedicated to the PANS & PANDAS community

Table of Contents

Foreword, Sarah Griesemer, Ph.D., Licensed Psychologist

Introduction

No Time for Waiting, Mom, United Kingdom

Light Switch, Mom, Utah

Back to Herself, Dad, New York

One Who Listened, April, age 8, Ohio

10th PANDAversary, Mom, Florida

Never Stop Fighting, Alexis, age 15, Georgia

In the Rearview, Dad, Minnesota

From Pain to Purpose, Mom, Massachusetts

Marlena, Age 15, Florida

The Road with Two, Mom, Ohio

Unexpected Compassion, Mom, Virginia

Turning to Faith, Mom, Minnesota

Justine, Age 10, Massachusetts

Life Today, Deborah Marcus, author of The Parent’s Survival Guide to PANDAS/PANS, Texas

Chasing Ghosts, Mom, Rhode Island

Two Points of View, Mom, California Daughter, Isabella, age 21

Lena, Age 8, Pennsylvania

Spreading Hope from the Darkness, Mom, Texas

Coming Full Circle, Justin, 29, Texas

Underneath It All, Dad, Maryland

Doctor Mom, Detective Mom, Mom, Ontario, Canada

What I Know Now, Mom, Texas

The Art of Healing, Mom, Tennessee

Keep Digging, Mom, United Kingdom

What I Remember Most, Kate, Age 13, Texas

Sydney, Age 13, Oregon

Life in Color, Mom, Missouri

Thanks to a Friend, Mom, Maryland

Pickles, Pepsi and Persistence, Mom, Delaware

Closing Thoughts, Parent to Parent

Acknowledgements

For More Information

"Walk until the darkness is a memory

and you become the sun

on the next traveler’s horizon."

– The Wizenard Series: Training Camp

by Wesley King and Kobe Bryant

Cover Art

My name is Delaney, and I’m 14 years old and have PANDAS. I drew a brain in the center of the painting because the brain is what is affected when an individual has PANDAS or PANS. Surrounding the brain I painted a red circle, which represents fear, anger and sadness. Finally, the bright colors dispersed outside the red circle represent the happiness, hope and joy experienced when a child has healed mentally, physically and emotionally

from the hard path they’ve been on.

Foreword

Sarah Griesemer, Ph.D., Licensed Psychologist

Being a psychologist myself did not protect me from the truly devastating experience of seeking mental health support for my daughter. Before she was diagnosed properly with PANDAS, two psychologists suggested she had autism, one therapist thought she was depressed, and another diagnosed her with Generalized Anxiety Disorder. I’ve never been so angry and disappointed in my profession.

Yet, I understood. In my 10 years of training to be a child psychologist, no one had taught me anything about autoimmune encephalopathies such as PANS and PANDAS and how they impacted children’s mental health. This topic was not represented in my neuropsychology coursework; in fact, PANDAS was only getting a name well after I had graduated. I became an expert only through helping my own daughter. Now, I work with parents whose kids have PANS and PANDAS (referred to throughout this book as P/P) because I want these parents to be given the things I didn’t receive: compassion, knowledge, hope, safety, care and support.

For those new to it, P/P is a type of autoimmune encephalopathy. In short, this describes a disorder where the body attacks itself, in this case its own brain, in the process of fighting a virus, infection, bacteria or allergen. FFor PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep), the triggering infection is strep, although children with PANDAS can have autoimmune responses to other triggers as well. For PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome), the trigger might be a tickborne illness, viral infection, or mold or other toxin. While our understanding will continue to evolve, our current theory is that the self-attack results in the swelling of the basal ganglia part of the brain. That swelling leads to a wide range of symptoms, including, but not limited to: Obsessive-Compulsive Disorder (OCD), tics, generalized anxiety, separation anxiety, school anxiety, depression, attention problems, intense rages, extreme sensory sensitivities, sleep issues, food restrictions, urinary issues, writing and math regression, difficulty planning and executing tasks, and in extreme cases, hallucinations and psychosis. Not all kids have all symptoms. There is no known cure for P/P, though there are treatments that can help manage the effects and encourage the body to heal.

P/P isolates parents and ruins marriages in a way I have seen few other psychiatric conditions affect families. Children who could leave the house, have playdates, go to school and follow directions are suddenly incapacitated, rageful, anxiety-ridden, unreasonable, paranoid and homebound. Stressed couples who used to be on the same page with parenting find themselves arguing about how to handle every new and scary behavior. Therapists give conflicting advice: Don’t feed into the child’s anxiety but also don’t push them too hard because you’ll trigger a rage. Your pediatrician might not believe that P/P is real, increasing the isolation and confusion and delaying treatment for your child. Families find themselves lost, alone and terrified.

I’m speaking of families rather than focusing on the child with P/P because this disorder is a systemic issue: parents, family, extended family, educators, childcare and neighbors are all affected by this disorder. The mom who struggles to send her child to school because doing so results in the child attacking the parent or harming herself needs support and flexibility from teachers and school officials. The dad who fears his neighbor will call Child Protective Services on him because his child is screaming Don’t hurt me! needs to know that his family is safe in their neighborhood. The parent who is barely getting through each hour needs encouragement from extended family, not insinuation that this is all somehow a permissive parenting issue. Caregivers who are repeatedly hit, attacked, bitten and screamed at need healing from the very real trauma that their bodies are experiencing.

The dilemma of how to get broader support and understanding is real. How do you explain that your child’s rages are not the same as your best friend’s daughter’s tantrums? How do you talk about what your family is experiencing without shaming or embarrassing your child? How do you convince your child’s teacher that your child isn’t a manipulative brat (oh, how often I’ve heard this phrase) but is in incredible pain and distress? In the middle of chaos and mental exhaustion, parents are tasked with piecing together a medical and emotional support system that doesn’t believe their problem is real.

The challenge of being seen and getting support are the two most common themes I hear from parents: #1: I don’t want to feel shamed for my parenting by telling people how bad things really are. And #2: Nobody understands how bad things really are. In order to solve #2, we have to start with #1. Our culture tells us repeatedly that there is a right way to parent, and if you act in this magical right way (that any one of 100 parenting books will claim they are the knowledge givers of), then you can magically control your child’s behavior. This way of thinking makes sharing typical parenting struggles difficult, and sharing P/P struggles downright impossible.

On to #2: Nobody gets how bad things really are. Once parents have a better understanding that people seeing their child rage, or run into the street, or yell swear words does not make them a bad parent, it becomes easier to actually share how bad it is. Often the resistance to talking about how bad it is, is the desire for our friends to just understand (or what I call, read our minds). We want them to automatically know that when we say, I’m really struggling that doesn’t mean, My kid slammed a door and gave me the silent treatment and I’m really mad. It actually means, I feel so much desperation and rage when my kid knocks over a bookshelf and throws books at his sister that I think I’m going to either implode and hide in bed forever, or explode and might actually hit my kid.

Unfortunately, mind reading—as much as we really want people to be able to do it—is not real. Your friends will not automatically understand that you are grieving the loss of who your child was. That you’re wondering if you’ll ever see them again, how they were. They will not automatically understand how scary it is waking up each morning with dread, never knowing what the day may hold. How exhausting it is staying up till all hours of the night while your child asks you why this is happening to them. They will not automatically understand how it feels to hear your child say they want to die. They will not automatically understand the deep and devastating loneliness.

If you are interested in taking a step on that journey of authenticity and honesty with those you trust, this book is a beautiful way to start sharing more of your life. By choosing a story from these pages that represents some of your experience, you get to show people a little more of what you are going through without having to say all the words. You’ll get to show them that you aren’t crazy; that this is real. You’ll get to finally be seen.

The stories in this book fill a desperate need for parents, extended family, physicians, therapists and others who work with or love a child with P/P. Though it’s easy to find online groups and fellow parents who are deep in the throes of trauma, grief, confusion and pain, it is very difficult to find stories of healing and hope. This book offers parents a lifeline that we need when we are in the darkest places.

If you are a practitioner, therapist, or physician, I urge you to set aside what you think you know about these disorders. I invite you to read with curiosity and openness to what you might understand in a new way. As providers we so often think we know what’s true. We think we understand