Malia, Thanks for caring enough to stick with us AND for sharing your thoughts here. It is frustrating for parents when we physicians don't know the answers to our patient's problems, or even the causes. TV shows like "House" don't help, as there is always an answer in the end. I do think what is important is to have a physician who can help to look at what is going on and work WITH the parents (sometimes by asking the same questions over and over) to try to establish a pattern, determine something way back in family history, or identify a trigger that wasn't previously clear. Doctors who stop asking questions may not be thinking expansively enough. One thing that annoys me terribly is when physicians or other health care providers assume that since a test was negative, or many tests were negative, the patient doesn't have a particular disease, and then they are dismissive of the problems. All it proves is that we did the wrong test(s).
Thank you for giving me a chance. You can't imagine how much it means to me. I am certain we can find many ways to keep you involved as we work to make the children's hospital even better.