When our daughter was first diagnosed with a condition that was rare and new to me, we dove into the massive internet searches typical of our Web MD generation. After all the research and discussions with members of the XLH Network, we decided to travel to see a well-known pediatric endocrinologist who specializes in XLH.
I am certain our new doctor must have thought we were slightly insane as we began the process of traveling halfway across the country three times a year to see him; however, we were confident we were receiving the best care possible. Still, at every appointment he suggested that we get a doctor closer to home. He said he would be happy to work with any doctor we chose, but that eventually we were going to want and need a doctor we could see without getting on a plane.
He was right. The trips for medical care began to take their toll, and my daughter was beginning to resent this additional aspect of her treatment. So, the search for a doctor close to home began again. I started by doing internet searches for pediatric endocrinologists at five different university medical centers within three-and-a-half hours driving distance. At this point, I knew what we wanted in a doctor, and I understood enough about XLH to know what kind of doctor we didn’t want.
During the first search, I'd had no idea that knowing these needs and how to express them would be so valuable. During the early days after diagnosis, I did not know that I needed to look for a doctor with experience treating XLH and who had an active research agenda that would better ensure they were up-to-date in terms of XLH research and treatment. I didn’t know that I wanted a doctor who would be more conservative with the care and would exhaust medicinal therapies before even considering surgery as an option. And because that was the first time I needed a specialist for my child, I did not know what type of doctor personae I needed for our family to feel comfortable with this transition.
During the second search, however, I knew what we needed. I pored over doctor profiles on university websites looking for an endocrinologist who listed interests in endocrine disorders other than diabetes. Eventually, I found a doctor whose research interests included “metabolic bone disorders.” I was cautiously optimistic, but knew that doctors' offices associated with universities tend to be overrun with patients and difficult to get on the phone. So, I emailed the office about our goals in which I explained the following:
- My daughter’s medical history and our hopes to find a doctor closer to home
- Our desire to find a doctor willing to work in conjunction with our XLH specialist
- My hope to have an open relationship with our new doctor in which lab results would be forwarded to me and to our XLH specialist
- A statement of excitement to have potentially found someone whose research interests suggested an interest in XLH
Two days later we received an email from the local specialist who is now our “home-base” doctor, and she told us she would be happy to meet with us. Our current medical checkups involve seeing our new doctor twice during the school year and a visit to our XLH specialist every summer.
I am posting our story in hopes that it will help provide others with ideas about how to get the best care possible for their children. I am conscious of the fact that many people do not have the option of seeking out medical care that is located outside their city of residence or their insurance network. However, I am also confident that knowing what you need in a doctor, combined with thoughtful correspondence, can lead to strong and rewarding doctor/patient relationships.
My daughter is now seven years old, and we have been working for five years to get to the point that we are now. It has not been easy financially, physically, or emotionally, but it has certainly been worth the peace of mind that comes with finding two doctors who I am confident care greatly for my child and her wellbeing.