Complex conditions and challenges
TJ’s primary health problems are autonomic dysfunction, erythromelalgia and eosinophilic gastrointestinal disease.
Autonomic dysfunction is a medical condition that can result in disabling function of the autonomic nervous system, the system that controls the body’s involuntary functions like blood pressure, heart rate, temperature, digestion and perspiration. For TJ, it has affected his development, his muscle control and his ability to communicate, eat and sleep.
“TJ seemed like a normal infant until he was about 4 months old,” Donielle said. “We don’t know why he has this. He’s been genetically tested, but that hasn’t revealed anything. We’ve seen several pediatric neurologists, but Keith Coffman, MD, is our lifesaver!”
TJ also has erythromelalgia, a rare neurovascular condition that most commonly affects the feet, but may also occur in the hands, face, or other parts of the body. In TJ’s case, his hands and feet become ice cold to the touch, and turn bright red. When this started, he would scream constantly, but his parents had no idea why.
“Because his hands and feet were so cold, we were trying to warm him up with an electric blanket,” Donielle said. “It turns out that was the wrong thing to do. Heat actually makes the condition worse, not better.”
And then there are the feeding issues. Donielle said those also began when TJ was an infant. “He would literally projectile vomit everything we fed him,” she said.
Donielle tried formula after formula, but nothing worked. Eventually, testing revealed TJ has eosinophilic disease, another rare condition that affects his gastrointestinal tract. Over the years, he’s had a variety of feeding tubes and even a central line.
To say that his nutritional intake has been difficult to manage would be an understatement, but John Rosen, MD, a Children’s Mercy pediatric gastroenterologist, now works with TJ to help manage his feeding problems.
“Dr. Rosen has been wonderful,” Donielle said. “TJ doesn’t have a voice, but Dr. Rosen lets me be his voice and a significant part of TJ’s care team. I really appreciate that.”