Parents put children at risk when they think they know more than a specialist. Several physicians have told me of their frustration about patients coming to them for advice and then not taking it. Many of these doctors are the top doctors in their specialties. I, too, have had this experience and one case still bothers me because the parents have put their child at risk.
About ten years ago, I saw a child with muscle weakness who most likely had a congenital myopathy. After examining the little girl, I said that in addition to getting a CPK blood test a muscle biopsy was needed. I explained that it would be done under a local anesthetic and I would be in the room to help the surgeon. I explained there would be minimal pain and only a small scar and the child could immediately go back to playing or do whatever the parents had planned. The parents became thoughtful and said they would let me know what they decided. I did have a phone call several days later saying they had decided to wait about having the biopsy done.
That was the last I heard until a few years ago when I had an e-mail saying their child had more weakness and what should they do. I was no longer in practice and once again said a muscle biopsy was needed. Unfortunately, the only places they could have a muscle biopsy done were with surgeons who would insist on a general anesthetic. If the child had Central Core disease, which is one of the congenital myopathies, this could put her a great risk for a condition called Malignant Hyperthermia. With the wrong anesthetic, the child could have serious problems and deaths have been reported.
If adults don't want to take a specialist's advice, that is one thing, but for parents to assume they know better than a specialist, it makes little sense. I understand if it is because of religious reasons, but even then putting a child at risk when there could even be some treatment is beyond my understanding.