Parents should be aware that most pediatricians and a lot of neuros are not familiar with the latest research on breath holding or autonomic dysfunction. Many of them believe that both are "benign," that is - they don't cause death. If your child is an involuntary breath-holder, you should arm yourself with the latest research and other information, print it out, and take it with you. Many hospital systems use the same net info source to provided patient information, and that source refuses to include the latest research. The ADAM website informs readers that breath holding is not dangerous . . . Sometimes it's not, but at other times, for some children, involuntary breath holding can result in death.
Have any of you stories or information to share about dealing with your doctors and this potentially life-threatening problem?
