Important Contact Information

If you find yourself at the hospital with a medical emergency, be sure to be involved in the plan of care. In addition to sharing your PPMD emergency card or PPMD app with clinicians involved in your care, it is also important to make sure a physician with experience in Duchenne is involved in you or your child’s care in the hospital. We have compiled a list of contact numbers from each of the PPMD Certified Duchenne Care Centers (CDCCs) below to ensure a Duchenne specialist can be involved in your child’s plan of care, and make sure this happens:

1. Call your neuromuscular team/center.
2. Call the hospital where you receive neuromuscular care if it is after hours.
3. Physician to physician calls.

If you have questions about planning ahead in case of emergencies, please don’t hesitate to email kathi@parentprojectmd.org or amanda@parentprojectmd.org.

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 you or your child.