Dealing with chronic illness and navigating the medical system can be extremely stressful on families. When a child has a condition that is not easily recognized, treatment options are not clear-cut, or required modifications are not well understood, it only adds to the pressure. Sadly, many TCAPP kids have experienced and been diagnosed with post-traumatic stress disorder. TCAPP mom, Kelly Lucid, shares her son’s story after he experienced conscious awareness during a surgical procedure.
Our 14 yr. old son Timothy fell skim boarding last August and fractured the growth plate in his elbow. He had a 1-½ hr. outpatient surgery that would change his life and ours.
Post op and 2 hospitalizations later, he was diagnosed with CRPS and Complex PTSD (Posttraumatic stress disorder) from anesthesia awareness. Timothy not only had the physical pain of CRPS but also the mental pain of feeling his entire operation and not being able to move to alert the doctors.
A literal, living, nightmare.
Thru this entire year we have been fortunate to have a chronic pain management physician who has been our guardian angel and Timothy’s pediatrician, psychologist, psychiatrist and physical therapist that have become his Dream Team. We have learned Complex PTSD is a deeper engrained level of posttraumatic stress that is extremely difficult to control. It is a demon living under the surface and it rears its ugly head when something so simple as a smell, touch or sound sets it off.
Think about all the experiences you have had in your life. The smell of your grandmother’s house, your first car, and the first flowers your husband bought you, your newborn baby’s skin. So powerful that it takes you right back like a time machine. Now imagine a time you were sad or scared...A car accident and the smell of burned rubber, the inside of a funeral home or a hospital. Now imagine a time when you were terrified…..The stench of an attacker’s breathe, the smell of the ocean and diesel fuel after your boat had capsized, the scent of sweat and dirt as you hide in a tornado shelter or Timothy’s experience, the vibration, smell and unspeakable pain of a drill thru bone, the sanitized smell of an operating room, the feel of sheets on your cold legs, the ability to hear in the doctors’ and nurses’ voices that they were unfamiliar with each other and being completely powerless as you try to alert them you are in horrifying pain. This may seem unthinkable and hopefully most of you will never have to have any of these experiences but some of you may, and you will have to learn how to heal on a daily basis like Timothy does. As a parent you will have to watch your child struggle in physical and mental pain not always knowing what will help or hurt them.
I have learned how fine-tuned the brain is and how it remembers everything - especially if it is a threat to your safety and survival. Chronic pain is a constant reminder to the brain that it’s in danger, reinforcing the PTSD. I wish I could tell you there was a manual for PTSD and Chronic pain. There isn’t. We had to really pay attention to the little things that were triggers. We changed everything. Bath soap, dish soap, laundry detergent, perfumes, hair products, colognes, clothes, and we even moved. Anything to create new experiences and pathways that were positive for the brain.
We had to figure out how to convince Timothy’s brain that the danger wasn’t life threatening anymore. At his worst, he was blacking out so his brain could hit a reset button to release the physical pain and mental pain it was feeling. He has had nightmares all night every night for the past year. His psychiatrist has tried EMDR-which is a rapid eye movement technique to help the brain forget the trauma, unfortunately with the physical pain of CRPS his brain could not forget. Timothy started going for 2 hr. hypnosis sessions about 6 months ago weekly and this has been the most effective way to control his pain and heightened hyper vigilance. He is not on any pain medications. He controls all his pain and PTSD thru hypnosis imagery and music.
Everyday is a new challenge and some days we can’t control his tremors or nightmares. Sometimes we have to know its ok for the body to release its pain, however it needs to heal. PTSD will never go away on its own, your brain needs help dealing with trauma. I have spoken to Veterans from our armed forces that still struggle many many years later with PTSD from their service to our country. Most of them never got the proper therapy and support needed to heal themselves. That is a tragedy.
As a parent, all you can do is reassure your child that you will never give up or stop trying to help them find a way to live as pain free as possible. That your love is strong enough to carry them thru and that the same power their brain uses to protect itself from trauma can also be used to heal itself.