I read this interview with Dr. Beaudet from Baylor College of Medicine and was thrilled to see his comment about how well-educated the parents of children with rare disorders can be about their children's condition. He also gives some good advice on how you can use that knowledge to work WITH your primary care physician.
It's definitely important to note that the physicians who study rare conditions like MCADD are fairly rare themselves. Therefore, when a primary care physician caring for a child with a rare condition calls that specialist to ask a question, they are usually more than happy to have a conversation. We should all use this advice to our advantage.