family

This story about a father and his daughter who has an undiagnosed genetic disorder really hit home for me. As the father of a daughter born with a number of conditions caused by genetics I could relate to his obvious protectiveness and concern. He also reminds me of my wife who knows everything about our daughter's care, schedule of endless appointments and specific issues that need to be addressed or brought up to the correct specialist.

His dedication and determination were inspiring. From the late nights doing research and going over data to the search for the best specialists, his story is one of true love for his daughter.

One area in particular that is discussed in the article comes up time and again with parents I meet who have kids with special needs.

Rienhoff bristled at Milewicz's dismissive tone. "I remember thinking, 'Who the fuck is this person?' I have never been in a situation where it was so obvious that a doctor had contempt for the curiosity of her patients. It was striking how insensitive she was to their dilemma."

Such a prickly reaction is out of character for Rienhoff, a soft-spoken man who normally exudes an easy calm. But he has developed a cynical streak about doctors, especially those who are quick to dismiss inquisitive parents as nuisances. "Medicine in general is a slightly paternalistic activity," he says. "You hear these stories about patients bringing in all sorts of information from the Internet and doctors being exasperated. And part of that is because there is so much they don't know, and they're supposed to be omniscient."

Parents of special needs kids are often better informed and more knowledgeable about their child's needs and condition than the doctor's treating them. The rarer the condition and the broader spectrum of care required, the more this is true. A doctor seeing a child that visits 10 or more specialists and therapists is not going to be aware of everything and parent's of special needs children are particularly aware of this. One of the reasons is the number of misdiagnoses that their kids receive (I counted at least three major misdiagnoses in the article). Another issue is the number of times doctors give worst case scenarios. My wife and I were given an innumerable amount of worst case scenarios that did not turn out to be true.

However, this advice goes for all parents. You know your child best and doctor's are not omnipotent or omniscient.