Injuries, falls, and illnesses are often unexpected and can lead to visits to the hospital. Medical emergencies can also happen anywhere, and you may find yourself far away from your neuromuscular care center, or near any hospital with known expertise in Duchenne.
We often receive frantic phone calls, emails, and Facebook messages from parents and people with Duchenne asking what to do in a time of an emergency. We understand your fears, and we want to make sure you are equipped with some important information you may need to advocate for yourself or your child during times of hospitalization and medical emergencies. No one can be prepared for every possible emergency scenario, but there are ways you can prepare so that when the unexpected happens, you know how to respond.
Although you or your child may require prompt medical attention, it is important to ensure you are involved in the plan of care so you receive the best and safest care possible. If possible, be sure to check the Emergency Checklist specific to the type of emergency you are experiencing so that you take everything with you that you will need. In addition to sharing your PPMD emergency card or PPMD mobile app with clinicians involved in your care, it is also important to make sure a physician with experience in Duchenne is involved in your or your child’s care in the hospital. For this reason, we have compiled a list of contact numbers from each of the PPMD Certified Duchenne Care Centers (CDCCs) to ensure a Duchenne specialist can be involved in your child’s plan of care.
Here are 3 ways you can ensure a physician who specializes in Duchenne consults on yours or your child’s case:
1. Call your neuromuscular team/center
It is extremely important to notify your neuromuscular care team if you are in the hospital with an illness or injury. This is especially important if you are being seen at hospital that is not affiliated with your neuromuscular care.
It is always important to notify your care team so they can work with the clinicians taking care of you or your child to ensure you receive the best care possible. Do not depend on the hospital staff to communicate with your neuromuscular care team; it is always best to personally confirm your neuromuscular care team is involved.
2. Call the hospital where you receive neuromuscular care if it is after hours
We all know emergencies can happen in the middle of the night or on a weekend when it may be more difficult to contact your neuromuscular center. It is best to discuss an emergency plan with your neuromuscular specialist and ask for a number to call outside of regular office hours.
If you do not have a direct number to a specialist on call, your next option is to call the main hospital’s operator and ask for the neurologist on call. From here, they should be able to connect you with the appropriate specialist and help drive your care.
3. Physician to physician calls
You have the right to ask for a second opinion. It can be intimidating to question a physician about their plan of care. However, they may not be treating you or your child in a way that is appropriate or safe for someone living with Duchenne.
Ask the physician taking care of you or your child to connect with your neuromuscular team (if you are cared for at a CDCC) or a specialist from one of the CDCCs (if you are not seen at one of these locations) to discuss yours or your child’s case. Each CDCC is located at a hospital that has a physician consult line, which you can give to the doctor taking care of your or your child.
Contact Numbers & Additional Resources
This information, including the list of CDCC contact numbers, is available on our website and through the PPMD mobile app. In addition, if you do not have a PPMD emergency business card, please contact us for one.
Please visit our emergency care webpage for more information about medical emergencies. This includes many additional resources about specific medical conditions, including emergency room checklists for everything you need to bring with you to the hospital.