By Donna Sullivan.
There is a sweet kind of magic that comes with being a mom. When your children are little, your very presence can bring comfort. A tight hug or gentle kiss can ease their pain and make “boo-boos” go away. But when kids have a chronic or complex pain condition, it is a very helpless feeling when medical providers are unable to offer effective treatment to help ease your child’s pain.
Each year, an estimated 1.5 million kids undergo surgery and in 20% of these cases, the pain becomes chronic. It is estimated 20-35% of children worldwide live with chronic pain. Yet the medical community does not place the same emphasis on treating pediatric pain as it does for adults. The opioid crisis is also affecting kids ability to get access to effective help. Pediatric hospitals are making great strides in understanding and attempting to treat chronic pain with psychologically based pain programs. But for the many kids who may have complicated underlying medical issues or who do not “get better” or get long term relief from these programs, there seems little else to offer them and the suffering continues.
Two of my three children are disabled by complex pain conditions: Ehlers Danlos Syndrome, Complex Regional Pain Syndrome, Tethered Cord Syndrome and spinal fusion. Pain has stolen their carefree childhoods and changed the fabric of our family. And as the medical community struggles to find ways to better assess, adequately treat, and understand pediatric pain, time marches on and parents must figure out how to best navigate the physical, emotional and logistical challenges of helping a child to live and function with pain. Day to day, it can be an overwhelming task.
This is why I am so grateful to a handful of moms who decided to band together and create a non-profit back in 2013 to help support kids and parents living with complex pain – and put these kids on the map. The Coalition Against Pediatric Pain known as TCAPP, aims to raise awareness, connect people and physicians, support families and advocate for this highly underserved population of children. Over the years, TCAPP has sent care packages to kids and held conferences to bring physicians together to discuss research and treatment options. This 100% volunteer organization has supported families in crisis and helped them plug in with experienced medical providers and most importantly, other families who understand the medical challenges they are dealing with.
TCAPP’s proudest accomplishment is working with The Center For Courageous Kids to found the country’s first summer camp specifically for kids living with complex pain conditions. With the support of sponsors including the Reflex Sympathetic Dystrophy Syndrome, Rock Out To Knock Out RSD and US Pain Foundation, TCAPP’s pediatric pain week offers kids a break from all things medical and just focuses on pure summer fun. For many of these kids, it is an opportunity to meet other children who share their condition and understand how hard it can be to deal with school and family when you live with pain. The friendships and comradery these young pain warriors have formed has been life changing for many. I have watched these kids and families share experiences, cheer each other on, and support each other through surgeries and dark times throughout the year. This is the reason why I believe the most important thing that a parent can do, is to find and plug in with others in the pediatric pain community.
Parents need each other, it does take a village.
TCAPP is always looking for volunteers and donations to help continue this important work. Please email me at firstname.lastname@example.org if you are interested in learning more about this wonderful organization and ways to help better support our young pediatric pain kids.