- Posted February 6, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
He went from a healthy 4 year old to an infant in weeks
- dsashin, CNN iReport producer
Tristan David Coffey
Diagnosis – Juvenile Dermatomyositis
(Very rare Auto Immune Disease) – 2 year Treatment (minimum), infusions, 12 daily meds
On January 12th, 2009, Tristan David Coffey was born, a day that changed our lives forever, for the good of course!! Tristan has always been a pure joy to anyone who meets him. We quickly learned how funny he is and that he was totally “an-on-the-move kind of guy”! But he grew, and grew, and grew. He was excelling in school and makes lots of friends. Tristan is the kind of kid that you can't get back in the house, loved to be outside, and riding his bikes. He has a love of bugs, dinosaurs, animals, and educational books.
Shortly after a week long trip I awoke to find Tristan's hands covered in a mysterious rash on his hands and. I called the pediatrician and she was sure it was that nasty "Hand, Foot, and Mouth Disease" going around, and not to worry that it would go away in like 10 days. After a few weeks I was growing more and more concerned. He started having other strange new symptoms including bleeding gums, falling asleep at school, and not interacting with the other kids anymore. He was refusing to walk, and I had to carry him everywhere. He would cry and scream when anyone would touch him becoming "ferociously" grumpy. Also a low-grade but non-stop fever for almost 2 months, and night sweats was another symptom. He stopped eating for 2 months as well, and lost about half of his weight, almost looking like he had walked out of a concentration camp. He was so very weak - not even being able to pull up his own shorts. Ultimately I had to take leave from my job, and pull him out of school which broke all of our hearts, because he loves preschool so much.
After numerous trips to every doctor that would even remotely listen to me, we were referred to an Infectious Disease Specialist who was concerned that his symptoms mirrored a condition called Juvenile Dermatomyositis. We were immediately admitted and spent 4 long days at Wesley Hospital in Wichita with lots of pokes, tests, and tears. We had up to 10 different specialists in our room at a time, and everyone wanted to see this strange new “case”, and still no one could come up with any answers.
We were referred us to Children’s Mercy in Kansas City, 3 hours away. Within minutes we received his diagnosis of JDM. We spent another 4 longs days at that hospital where we had another 10 specialists wanting to poke, prod, and examine Tristan.
Juvenile Dermatomyositis- A very rare auto-immune disorder.
Explanation: His immune system is attacking itself, which causes his entire body to be inflamed, causing him lots of pain in lots of places. I've heard the pain described as feeling like a burn 20 minutes later. Only 1 to 3 children in a MILLION have this disease, and literally there is ONE book written on it. JDM is chronic, its not genetic, it is treatable, but not curable. The treatment is a 2-year minimum and includes 11-14 daily medications and drugs including transfusions of chemo, lots of steroids, prednisone, etc. JDM effects the skin and muscles mostly. This is a lifetime diease that can flare up years after remission. It can be life threatening and has a long list of serious complications including cancer, lung disease, hearts disease, etc.
Tristan’s disease attacks his hands, feet, muscles, bones, joints, and internal organs. The inflammation of nerves effect can affect eyesight, mobility, swallowing, and more. They call it the "Invisible Illness" because except the hands and feet, there is little that is obvious to the eye. He looks like a perfectly normal child, you would never know that he is fighting daily for his life.
Since his diagnosis he has had to have a port a cath inserted in his chest for his weekly steroid infusions he receives and monthly IVIG (healthy cell transplants). Trying to convince a 4 year old to let them put a once in needle in his chest is often a struggle but he is starting to come along. The treatments are often as bad as the disease itself. The steroids give him huge mood swings, makes him gain weight, and changes his appearance as well. Thrush in his mouth is often a common problem because of all the medications.
Another big change for Tristan is not being in the sun. The sun makes him feel like he is being burned, and can flare up his JDM. We have to apply sunscreen daily, wear hats at all times, can only be outside after a certain time, and for short increments but he is the same ‘ol Tristan. He laughs a lot, constantly making jokes, loves to learn, and enjoys life. He is such a tough kid, and has been through so much