COPING & HEALING

Before major trips, you should speak to your child's cardiologist and pediatrician to agree on a calling protocol (when to call, 24 hour number to call) in case you need to reach them. If your child has a pacemaker/defibrillator, you should also notify the electrophysiologist. It is a good idea to obtain a letter explaining your child's medical condition, his/her medication dosages and any surgical procedures performed in case you need to show it to an attending physician elsewhere. A good form to have filled out by your child's physician is the universally accepted standardized "Emergency Form for Children with Special Healthcare Needs" provided by the Committee of Pediatric Emergency Medicine. This form provides important medical information for hospital or pre-hospital emergency management.

The best advice is always be prepared for an emergency when traveling:

• Keep a list of your child's physician's phone number and prescriptions with you at all times.
• Pack copies of all necessary medical documents such as major tests, explanation of diagnosis, immunization schedule, medication prescriptions, AICD guidebook and patient card, insurance information, and important numbers (cardiologist, electrophysiologist, pediatrician). Or bring a medical explanation letter with you so that you will have relevant information for a physician who has never treated your child before.
• Ask your doctor to recommend a medical center or doctor near where you will be visiting. If possible, find out the directions and contact numbers for these references in advance.
• Always take more medication than you know you need in case of some spills. To prevent the possibility of your child's medication getting lost, keep your child's medication with you at all times and do not check it in.

As common sense will dictate, caution should be exercised in scheduling vacations or trips to remote destinations where the level of medical care is rudimentary or where knowledge of cardiomyopathy is limited. The same considerations apply to traveling on cruise ships where the level of medical care may not be advanced enough to handle a cardiac emergency.