No one wants to be sick or go to the Emergency Room unless they absolutely need to. Keeping your lungs clean and your breathing easy will help you to avoid the Emergency Room. Unfortunately, winter is the time for respiratory illnesses and colds. During a respiratory illness/cold, your weak cough can become weaker, making it harder to clear mucus from the lungs.
If you cannot effectively cough the mucus from your lungs on your own, you may need help from a “cough assist machine.” Some important notes:
Dr. Daniel Sheehan (Pulmonology, Women and Children’s Hospital of Buffalo, NY) has shared a handout that he, his respiratory assistants/team and PPMD have developed to help patients and parents understand how and when to use a cough assist machine during a respiratory illnesses/cold. Following these suggestions may help everyone stay out of the Emergency Room as much as possible.
If you do need to go to the Emergency Room
If you do need to go to the Emergency Room, the providers there will need as much information about you and Duchenne as possible, so that they will know what medications and procedures will be safe and helpful. Wearing a medical alert bracelet (or tag of some kind) will help first responders know what they should and should not do to help you. Dr. Sheehan’s group and PPMD have also developed a short, one page history that you should complete and take with you. You also should take your Cough Assist and BIPAP with you if you already have them. Let your Neurologist, Pulmonologist, Respiratory Therapist, and/or Cardiologist know you are going to/in the emergency room. Please ask your emergency department physician to page your specialist (pulmonologist, cardiologist, neurologist) when you arrive.
If you would like more information on the dangers of oxygen, our blog last winter with Dr. Jonathan Finder (Pulmonology, Children's Hospital of Pittsburgh) explains why giving oxygen without careful monitoring can be dangerous, and even fatal, for patients with Duchenne. Key information regarding the use of oxygen can also be found on the PPMD Emergency Card, which can be found on the PPMD website and app. You should always keep a copy of this card with you and with your child’s emergency information.
If your child requires a procedure or surgery, they will require anesthesia. Some medications used for anesthesia are safe for people with Duchenne, and some are not. A list of safe and unsafe medications used for anesthesia and pain can also be found both on the PPMD website and app.
Again, no one wants to be sick, have an emergency or land in the hospital. But accidents and emergencies happen, and the more prepared you are, and the more information you have to give the medical team, the better your experience can hope to be.
1. Finder JD, Birnkrant D, Carl J, et al. Respiratory care of the patient with Duchenne muscular dystrophy: ATS Consensus Statement. Am J RespirCrit Care Med.2004;170 (4):456– 465