I have always been fascinated by the mystery, beauty and power of the mind. That is why I became a psychotherapist. Healing is not just an aspect of my career; it is a belief in the ability of the mind and body to grow and change and heal.
So when my 7 year old was afflicted by a brain on fire, a body that attacks itself in an autoimmune volcanic eruption, I was stunned. My beliefs were challenged because this body of ours can turn against us.
Our journey has really just begun. In October 2020, my beautiful, bright, curious and loving little boy changed dramatically. Something seemed to “take over” his personality, his true self. Behaviors erupted; fixations on doing things that if not fulfilled became a full blown tantrum of aggression at himself, at others, screaming, a tortured state where nothing; not giving in, nor setting limits could stop. Obsessive and intrusive thoughts tortured his every day.
“Something is telling me mama to watch that show, I HAVE TO WATCH THAT SHOW or I will Die; MAKE IT STOP, MAMA!! YOU’RE NOT HELPING MAMA! You don’t believe Me!!! I Can’t control this. If I don’t do it then the demons will come!”Initially, my husband and I wondered; “is it the pandemic? Is it stress?” “Are we too lenient; are we too strict?” NO. Something is not right. Something is very wrong; this is not my child. My intuition guided me. He knew it too. He would tell us, “You can’t understand; there is something wrong in my brain. Nobody understands, Mama.” Sleep became a nightmare every night. He could not be alone. Then he could not be alone in the daytime. Then, he would see faces and monsters, and hear things. “I HATE myself Mama; I want to die!” This volcano was swallowing my child before my eyes.
A therapist friend repeated a word she had said multiple times before; “PANDAS, look into it; we know a specialist.” After 3 months of confusion, chaos, worsening symptoms and new issues of cognitive deterioration, we pursued this specialist and various blood tests and finally received a diagnosis.
I expressed to my son, “YOU were right; YOU know yourself, you are amazing because you can TRUST yourself. YOU were right. That is one good thing that has come of all of this”
Ibuprofen doses, prednisone and Azithromycin brought my son back initially. But not completely. The volcano was always lurking nearby. One course of antibiotics after another, trials of antifungals, occupational therapy, behavior charts, play therapy and diet changes; something was missing. The support that I received through PANDAS websites, research, support groups and facebook groups lead me through this dark place and continues to do so.
After reading the book, “Chronic” I followed an intuition again. I needed to test for Lyme. Something else was going on here. He exhibited physical symptoms; joint pain, confusion, neck and backaches. This was not just about strep titers. After thorough, comprehensive testing through the right labs (apparently key to uncovering Lyme thanks to my research), we later discovered Lyme and parasites. There was no rash. There are no explanations. But infections are there. We continue to discover more and more each day. Our hearts continue to break as parents watching this natural disaster disrupt the peace and innocence of his childhood. We are trapped on this volcanic island, desperate to find our way home again.
There is an ancient story from Hawaii called “The Bowl of Light.” It says that every child is born as a perfect bowl of light. With each pain and suffering, a stone is dropped in that bowl. Sometimes, too many stones cover the light. My son is filled with Light. These PANS kids have this Light, just a bit covered up. My son’s special gift/talent remaining is his drumming—he is Amazing; he is a Star. A loving heart peeks in and out; his spirit seems to be holding on by a thread. We are so hopeful that treatment can bring back his little spirit—he is going to do great amazing things in this world—we can feel it. But mostly, we just desperately want our little boy back, in all his silliness, quirkiness and even special sensitivities to the world. He needs a strong healer to save him somehow, my guess is it’s something deep inside him that will ultimately bring him back and uncover that Light.