Checked out a new PCp today. I think we have a keeper. She claims that she is not an expert on EDS, but I think she is as much of an expert as one can be for such a multifaceted and unpredictable disorder. Dr. Whitcomb was compassionate and knowledgeable. She took her time going through Shaynen’s history and finding out what we have done so far.
She was able to give us a number of doctors that would be good for specialist areas. She explained that a couple of them are out of the box thinkers and have slightly different personalities. I agreed with her that sometimes to find the best doctors for a disorder that is so unpredictable we need to find doctors willing to look outside the box. These doctors in turn may not present with the personality of a typical doctor. I often find that we like this type of doctor best since in our book normal is just a setting on the washing machine.
She confirmed that some of the doctors that we are already seeing are ones that she would recommend. This reassured me that my perception of doctors we’ve found is correct.
She also suggested biofeedback as an option, which no other doctor has. I hope our insurance pays for it. I think it would be great. Even though Shaynen can’t control much of what is happening to his body, working with biofeedback will help him learn how to connect with his body and control aspects that he can. I think it will help him with pain and dealing with chronic fatigue to a point. It is not a cure, but I think it will be useful for him to have in his toolbelt of coping skills.
I had my 3 ring binder of most of his medical records since starting on the path toward diagnosis with me. She asked if I had time for her staff to copy it before I left since they had not received records from other doctors yet. I was happy to wait. I also brought in Rethan’s binder and they copied it as well so they will be prepared for his visit in two weeks.
The other thing that I liked about Dr. Whitcomb is that she didn’t just say come back when you need something. She had us schedule an appointment each month so that we can check in regularly. She sees herself as the coordinator of my sons care instead of just someone we go to when a need arises. She wants to check in regularly to see how things are going and see what he might need at that point. I was very impressed and happy to hear this. This is the first time I’ve had a pediatrician take a proactive stance toward Shaynen’s chronic illness. I definitely think we have a keeper for a long time to come.