Our 10-year-old daughter who was once a beautiful and passionate dancer now sat in a wheelchair as walking was far too painful.She had lost sensation below her knee, where the excruciating pain was coming from.Her foot had become discolored, swollen and extremely cold.
While trying to get a diagnosis and treatment we took her to 2 different Emergency rooms, one urgent care clinic, 2 pediatricians, 2 neurologists, 3 orthopedic surgeons, 2 physical therapists, a holistic MD, an acupuncturist and 2 Rheumatologists.When we finally got the diagnosis of Complex Regional Pain Syndrome, we were told that our daughter would be able to regain function of her leg but that she would need to learn to live with the pain.My 10 year old would go into a Pediatric Pain Rehab Program in another state in order to learn to walk and live with her pain.
I felt as if our family had experienced a personal earthquake.Our life had drastically changed and yet our family and friends could not grasp the magnitude of the earthquake we had experienced.It’s not that our friends and family didn’t care, there just wasn’t anyway they could truly understand the helplessness, frustration and daily challenges we were going through.
We no longer had the luxury of deciding which after school programs to sign up for, whether she was ready for sleep away camp or would get a lead role in the theatrical production.We were now filling our days and nights researching rare medical conditions, exploring complimentary pain treatments, and trying to find doctors who possibly had answers and could offer us hope.
It was only when I found other mothers, who had survived the initial earthquake of parenting a child in pain, did I feel understood, embraced and truly supported.I consider these women as family, as together we celebrate our children’s successes and cry when any child has a pain flare up.We encourage each other to keep fighting.And just as we support each other, our children have come to support each other.While each of us face don’t know what the future will bring for our child, we know we won’t be alone in whatever the future may hold.
We realize there is power in numbers and that if we want to bring attention and funding to these misunderstood and under researched diseases, The Coalition Against Pediatric Pain (TCAPP) needed to be created.For the love of our children and those we have met on this journey, we have decided to take matters into our own hands and have embarked on a path to affect change: to support and unite families affected by pediatric pain, to increase awareness through education and to raise the much needed funds to find treatments and cures within our children’s lifetime.We hope you will join us on our journey.
Barbara Granoff, founding member
Newport Beach, CA