Anesthetics and Children
Linda here - I'm not a doctor, I'm not even a parent, but I can tell you that the worst times I've experienced here at the head office of CMT International have been when we've been notified that a young child with CMT - misdiagnosed as asthma - has died because their breathing was affected by CMT while undergoing what should have been a routine childhood operation for tonsils or an ear problem. The child subsequently developed pneumonia because he or she couldn't cough up the phlegm in the lungs from the anesthetics. Several have died.

If, before an operation, a doctor knows that a child has impaired breathing and communicates with the anesthetist, the anesthetist can prepare himself and staff to not only monitor the child well during the procedure but keep him warm during the operation so he doesn't use all his energy trying to keep his body warm. This means the child will have more energy to breathe and get well immediately after the operation.

There are some anesthetics that are "iffy" when the person has CMT and it is advised that the anesthetist order the staff taking care of the child after the operation to make sure the child does what is called efficient "toileting" which means throwing up and coughing up the residue from the anesthetics. It is much better to get rid of it than to not.

If your child has been diagnosed as having asthma, just to be sure it is asthma and not the phrenic nerve that serves the diaphragm muscles that make the lungs work that is making the child short of breath, have your child checked for phrenic nerve involvement. This can be done by any doctor specializing in lung diseases. The problem seems to begin with the physicians who are not aware that CMT can affect breathing. So a child has phrenic nerve involvement and diaphragm muscles that don't work very well, thus not allowing him or her to easily cough up phlegm resulting from a cough or anesthetic. A child can also have asthma and phrenic nerve involvement, this is not uncommon.