A Mother’s Thoughts
By Stacie Manna
“PANDAS mom” is a title I would not wish on anyone. PANDAS, standing for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is a disorder estimated to affect 1 in 200 children. It is common for a child to go to sleep one night and wake up the next day as if they became “possessed.” It is by far one of the most exhausting, heart-wrenching positions to ever be in as a mother, while feeling completely unprepared and hopeless. We are given this title without permission and forced to become someone we do not want to be. We are exhausted and feel empty at the end of each day. But today, I am here to give you permission to regain hope again.
As a PANDAS mom, we are faced with so many unpredictable and heartbreaking moments on a daily basis. Our child, or in some cases, children, are suffering an unimaginable disease while their body attacks their own brain. A PANDAS child will display a variety of symptoms that may include: violent/aggressive behavior, OCD, depression, anxiety, restricted eating, motor or vocal tics, suicidal thoughts, ADHD, hyperactivity, insomnia, eurenesis, age regression, inability to attend school and more. Being a parent of a child with just one of these symptoms has its own unique set of challenges. When you compile them together, it is nothing short of a living hell.
Mom (also known to a PANDAS family as scheduler, caregiver, nurse, doctor, teacher and therapist), I am here today to tell you one thing: It is okay to have hope for your future.
I know you have been let down by many doctors. I know your child is suffering. I recognize you are completely exhausted. I know you are scared. I understand having hope seems so far out of reach for what you have been through. But I promise you, it is okay to have hope. In fact, I encourage it.
The daily battles we face makes it so difficult to remain hopeful. We take the beatings, tumultuous or sullen, and distant behaviors from our child that can be physical, emotional and verbal; and, we are faced with dead ends as we pursue support. On top of that, we are criticized by our own friends and family and given unsolicited parenting advice, implying we are the issue. We lose hope in humanity and crave normalcy that we once took for granted. We leave doctor appointments discouraged and plead with the outside world to help our child. We battle our child getting a chance at an education. We long for a hug from our once loving, affectionate children. Through all of it, I promise you, it is okay to have hope again.
As a mom of two PANDAS children in remission, I want you to know that it is okay to celebrate today. It is okay to take a moment for yourself and it is okay to feel all of the emotions you are feeling. It is okay to mourn your past life, be angry for being given this title you never asked for, question why this happened to you, grieve your child that was stolen from you and long for a day of peace. I know how easy it is to lose hope in the trenches and to wake up questioning your very survival; But it is also okay to have hope for the future. For your child, for your family and for yourself.
What I know is that there is a large population of survivors. There are numerous case studies showing IVIG is an effective form of treatment. There are former PANDAS children turned college students graduating with honors. There are mothers so incredibly proud of their child for what they have gone through that are counting their blessings on a daily basis. There are adults who were once children that outgrew the disease. There are families that came out of this battle stronger than ever. There are many new relationships formed from families that met through the disease. There are doctors working tirelessly for a cure.
When all hope is lost, give yourself permission to feel it again. The PANDAS world is so lonely but the community is not. We are here, together. The future of your family and your child is not grim. The momentum we have pushed for is picking up. We have a long road ahead, but have already traveled so far. Be hopeful and know that there is hope for the future. It’s okay to feel it. I give you permission to do so