Since Abby was born we have done our best to surround ourselves with the best people to treat her. The best doctors, the best therapists, the best teachers, etc. Nothing but the best. In all that time we really never came across an expert in dealing with Rhombencephalosynapsis. The smartest of our "tribe" realized that the closest to an expert on RS was the parent. As a parent of a child with a rare disorder you spend hours and hours and hours (or at least I do... OCD much? ;D) doing research, reading the limited literature and connecting with anyone who knows anything about RS.
One of the things that has driven me the most insane are the people who act as if they are some sort of expert on a rare disorder. As if reading two studies about the diagnosis make on an expert...
We have come across way too many of these supposed "experts". They are usually quick to share their (ill wanted) "advice". They often berate you for decisions you have made. They feel as if there are a number of things you should or should not be doing.
Last week I went for an ultrasound of this baby and I came across a rare mix of the two. A doctor who entered our room telling us that he had "the answer" to what was "wrong with Abby". He announced that she probably has Dandy Walker Syndrome. I smiled, assured him that this diagnosis had been ruled out by her neurogeneticist and tried to move on. I think he felt a little foolish so he began to back track but asserting that the only true expert in the room was me.
Thankfully he was wise enough not to push the issue (like so many have done). It just gets tiring. Until the day comes when someone actually has light to shed on RS I wish people would just leave the parents be the "experts".
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