- Posted January 24, 2014 by
O Fallon, Missouri
This iReport is part of an assignment:
Living with a rare disease?
Allergic To His Body - A Two Year Old Fights Against DCM
- dsashin, CNN iReport producer
My brand-new baby, my everything, my son, was wrapped in blankets to protect his body from his hands. His sweet body covered from the tip of his head to the soles of his feet with blisters, hives, knots, and raw places where the blisters had come open. His skin the texture of an orange and fire-engine red. After spending the next 5 days in isolation with many diagnoses thrown about, the doctors finally introduced words into our lives that forever changed us: Pediatric Diffuse Cutaneous Mastocytosis.
My son's body has an abnormal accumulation of mast cells. These cells can be found anywhere in the body and are concentrated in the GI track, skin, and respiratory system. These cells communicate with the immune system to aide in protection, tissue healing, and tissue growth. There are pockets within them that contain chemicals that help them complete this task. Histamine is a major chemical within these cells, and important to the mast cell. For my son, these cells have overpopulated his body and the covering of the cells come apart leaving the chemicals inside of them to spill out into his body and skin. Histamine is set free to wreak havoc on his body, causing systemic allergic-type reactions. His whole body turns purple, he struggles to breath, itching so fierce that he tears his skin open to get any sort of relief. Blisters the size of quarters and half-dollars appear with even the slightest friction to his skin - and on a small 8lb7oz baby, they were massive. Sometimes, they would fill with blood and bleed for what seemed an eternity and profusely. The hives appear instantly and raise up like rocks under his skin. When the diagnosis came down - and it did so only by a miracle - we were given a piece of paper of things to stay away from that could cause allergic reactions, a prescription for Benadryl, and taught how to draw up epinephrine in the event he went into anaphylaxis.
We were very fortunate to be put into contact with one of only a handful of mastocytosis specialists in the world who became our lifeline - our beacon of information and hope. She helped my husband and I start the journey of living with mastocytosis and helping us to care for our son. We were given an plan to start antihistamines as a way to ease the histamine burden on his body and calm the cells; lotions to help us soothe his painful skin. We were told that he could have mast cell and allergic attacks to foods, clothing, things in the air, heat, cold, anything and everything. We would have to wait and see. We could only treat the symptoms, not the disease.
Today, he is 2 years old. In the past two years, there have been moments where we were so afraid that we would lose him. There have been moments where we fell to our knees in defeat of this horrible disease. We have watched him claw at his body, cry out in pain, struggle to walk or move. He could never sleep. We tried medication after medication to help him feel comfortable and it seemed as though nothing was calming his body from attacking itself. After many sleepless nights and terrifying days, we found ourselves in a place where the blistering and itching eased. His skin softened but was left with horrible scarring - almost as if he was burned. His medications were working. He was living as comfortable as he could. His personality came to life. We finally came to life as his parents.
Our son still suffers daily with pain and intense itching. When he is sick, we keep epi-pens close at hand so that we can keep him alive long enough to make it to the hospital as illness of any kind can cause a mast cell attack and anaphylaxis. People will stare at him, fearful that they could "catch" what makes him look they way he does. Parents have pulled children away from him. People have commented on what terrible parents my husband and I are for harming our child they way we have. Mastocytosis is the only thing my child has ever known. He knows no different. Despite it all, he is strong. He is happy. He plays with everyone and is curious about everything. He is a little boy anxious to learn and explore the world. This disease has caused so much pain and hardship in his life but he is BETTER because of it.
There is no cure for this disease. This lies in the fact that we are still unable to say what causes it. All we can do is treat the symptoms as they arise and comfort him the way mommy and daddy are supposed to. This disease has won many battles but we refuse to let it win the war.