Great Doctors Are A Precious Commodity

I am writing today because my family has been so fortunate to have extremely wonderful doctors and I think they need recognition.
Darein's geneticist discovered Darein's diagnosis of Antley-Bixler syndrome when she was 10 years old. He then proceeded to work with his wonderful assistant to write an article about Darein in the Medical Journal of Genetics so that others knew what to expect and learn from this syndrome. During the process of writing his article he then moved on to Virginia. However, he still kept in contact with me via email. We communicated for several years while he was there and he gave wonderful advice and just overall kept up with how she was doing. He then notified me that he was moving back closer to home and would be at St. Louis and would contact me. I hadn't heard from him since this summer and was starting to wonder if he would contact us. However, as promised he contacted me today via email. He had questions on Darein's development and stated that the doctor in England that did Darein's genetic mapping was interested in some follow up research. We are always very eager to help them as we know that hopefully it will benefit others and will hopefully bring us closer to knowing more about this rare syndrome. We still don't know the prognosis of someone with this syndrome and Darein has the mildest form so we are flying through things blindly and never know when she has some new ailment if it is related to her syndrome or totally independent of the syndrome. We have so much to learn and it is so nice to have doctors in your life that care about your child and your family and help you through the unknown as life moves forward. We always have so many unanswered questions and it is nice to have someone to go to that can either answer those questions for you or at least knows what concerns you have and can help work with you on finding out the answers. This doctor took Darein's case to international meetings with other physicians trying to find out the name of her syndrome for several years until he finally got an answer.
My opinion is that there are too few of these doctors around this day and age. So many physicians want to take care of whatever symptom you are having and act annoyed by all of your questions or difficult situations. We have been so extremely blessed with so many incredibly wonderful physicians and I think that it is important to write about them on occasion so that people know that they do exist and you don't have to settle for someone that doesn't appear to care for your health, especially when it comes to your children. I don't mind a doctor that doesn't have an answer for me but I want them to go that extra mile and work to get an answer for me and they do exist. It took Darein's geneticist 10 years to finally diagnose her and even then it didn't really affect how we were already caring for her but it was nice to have a name. It is also nice to have someone to talk through issues that you are facing and to find the appropriate doctors to help you a particular problem.
I do worry as she gets older that there are not as kind and caring physicians for adults as there are for children. However, as Darein grows older she will still have all the many needs for specialists and care that she does as a child and I do worry what to expect from physicians as she changes from pediatric care to adult care. Maybe, if we start expecting more from our doctors as parents then we will receive better care from them. It is very important to be on top of your healthcare and I think it helps with your doctor's attitude towards you as well as your attitude towards them. All doctors like to know that people actually care enough about their health to know what problems they are having and that they are taking good care of themselves. By the same token, as a knowledgeable person who knows your health better than anyone else you should also feel confident enough to know if a doctor isn't right about something that he is telling you based on how you are feeling. Not all doctors graduated at the top of their class and just because they have MD behind their name doesn't mean they know more than you about your health. A good doctor will always take the time to find out how you feel and what problems you are having and never make you feel rushed or talk over your head.
Just because they may not have that demeanor at first doesn't mean they aren't good either. Sometimes, they just need someone to tell them what you expect from them. Darein had a doctor recently that we had been for for quite some time and we weren't thrilled with his demeanor. He came through his office with lots of assistants, talked fast and didn't act like he knew who we were. I finally had a conversation with him as his predecessor had assured me that he was very good. I just told him that he was going to need to inform me of his thought process because if I didn't feel confident in being in the know then I would not be confident that he knew what he was doing and would need to seek a second opinion. After he understood how concerned I was, he took time out of his day to call me personally and have a discussion with me and let me know what his thought process was and that he understood if I needed to seek a second opinion. Ever since then he has been patient and kind and takes the time to understand our concerns. I think sometimes these doctors just aren't used to people taking such a personal interest in what they are trying to accomplish and they need to understand that you are working with them to accomplish the same goals.
I hope this article helps people to stand up for what they know is right, find good doctors, learn to communicate effectively with them, understand that they are just people too and it is okay to let them know that you don't agree and make them explain themselves so that you both are confident in the plan of action. Do your own research on questions of concern so that you can have an intelligent conversation with your physician and they know that you care about your health as much as they do. Hope this article helps someone and as always feel free to comment or ask questions and try to stay warm during all of this snowy weather :)