by: Parent Project Muscular Dystrophy
RSV, Flu, & COVID-19. Injuries and illnesses are often unexpected and can lead to visits to the hospital, especially during the winter season. Medical emergencies can happen anywhere, and you may find yourself far from your neuromuscular care center, or any hospital with expertise in Duchenne.
It’s easy to panic in an emergency, and not know what to do. We understand your fears and want to make sure you are equipped with the resources you 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.
When you or your child require prompt medical attention, it is important to remember to T.H.I.N.K and ensure you are involved in the plan of care so you receive the best and safest care possible. In addition to sharing your PPMD emergency card or PPMD mobile app with clinicians involved in your care during an emergency, 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 your or your child’s case:
1. Call your neuromuscular team/center
It is critical 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 a 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 specialist on call (i.e. Neurologist, Pulmonologist, Cardiologist, etc). 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, even with the best of intentions, 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 your 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.
CDCC Contact Numbers & Additional Resources
This information, including the list of CDCC contact numbers below, is available on our website and through the PPMD mobile app. In addition, if you do not have a PPMD emergency care materials, you can order them for free here.
Visit our emergency care webpage for more information about medical emergencies. This includes additional resources about specific complications that can be seen in Duchenne, including emergency room checklists for everything you need to bring with you to the hospital.
If you have questions about planning ahead in case of emergencies, please don’t hesitate to email careteam@parentprojectmd.org or schedule a time to connect with us directly.
| Center | Neuromuscular Clinic | After Hours | Physician to Physician |
|---|---|---|---|
| Akron Children's Hospital | 330-543-6014 | 330-543-1000 | 330-543-8050 |
| American Family Children's Hospital | 608-890-6500/ 608-263-6420 | 608-263-6400 | 608-263-3260 |
| Ann and Robert H. Lurie Children's Hospital | 312-227-3550 | 312-227-4000 | 312-227-3560 |
| Arkansas Children's Hospital | 501-364-1850 | 501-441-3453 | 501-441-3453 |
| Billings Clinic | 406-238-5770 | 406-238-5800 | 406-238-5107 |
| Children's Hospital Colorado | 720-777-2806 | 720-777-1234 | 720-777-3999 |
| Children's Hospital of the King's Daughters | 757-668-9729 | 757-668-7000 | 757-668-9999 |
| Children's Hospital of Richmond VCU | 804-628-5804 | 804-828-0951 | 804-828-0442 |
| Children's Hospital Wisconsin | 414-266-3464 | 414-266-2000 | 414-266-2460 |
| Children's Medical Center Dallas | 214-456-2768, opt 2, opt 5 | 214-456-7000 and ask to speak with ON-CALL NEUROLOGIST | 214-456-7000 and ask to speak with ON-CALL NEUROLOGIST |
| Children's Mercy Hospital Kansas City | 816 302-3387 | 816-234-3000 | 1-800-466-3729 |
| Children's National Hospital | 202-476-6193 | 202-476-5000 | 202-476-2120 |
| Cincinnati Children's Hospital Medical Center | 513-803-3000, option 2 | 513-636-4200 | 513-636-4010 |
| Duke University | 919-613-6832 | 919-684-8111 (ask for MD to be paged) | 919-416-3853 |
| Helen DeVos Children's Hospital | 616-267-2500 | 616-391-9000 | 616-267-2500 |
| Kennedy Krieger Institute | 443-923-9525 | 443-923-9200 | 443- 923-9403 |
| Lucile Packard Children's Hospital Stanford | 650-723-0993 | 650-497-800 | 800-995-5724 |
| Nationwide Children's Hospital | 614-722-2203 | 614-722-2000 | 614-355-0221 |
| Nemours AI Dupont | 302-651-5930 | 302-651-4000 | 302-651-4000 |
| Phoenix Children's Hospital | 602-933-0970 | 602-933-0970 | 602-933-0970 |
| Pittsburgh Children's Hospital | 412-692-5325 | ||
| RIley Children's | 317-948-7450 | 317-948-7450 | 800-622-4989 |
| Seattle Children's | 206-987-6678 option 5 | 206-987-2000 | 206-987-7777, option 4 |
| St. Louis Children's | 314-362-6981 | 314-454-6000 | 314-362-6981 |
| UC Davis | 916-734-7041 | 916-734-2011 | 800-482-3284, option 2 |
| UCLA | 310-794-1195 | 310-825-6301 | 310-405-9824 |
| UCSF Benioff Children's Hospital | 415-514-8848 | 415-476-1000 | 877-822-4453 |
| University of Iowa | 319-353-6200 | 319-356-1616 | 319-356-7726 |
| University of Rochester | 585-275-2559 | 585-275-2559 | 585-275-2559 |
| University of Utah/Primary Children's Hospital | 801-885-7575/801-213-3599 | 801-662-1000 | 801-213-7789 |
| University of Virginia | 434-924-8184 | 434-924-0000—page Developmental Pediatrics on-call provider | 434-924-5491 |
| Vanderbilt | 615-875-8500 | 615-936-1000 | 615-936-4444 |
| Yale New Haven Children's Hospital | 203-688-4221 | 203-688-4242 | 888-964-4233 |
