Tips for getting second opinions on your DMD care plan
Fact-checked by Getting a second opinion is common and can be very helpful for those living with Duchenne muscular dystrophy (DMD) and their loved ones, especially when treatments are not working as expected.
The condition can have a significant impact on various parts of the body, including the muscles, heart, lungs, and bones.
If your loved one is living with the disease, you want to feel confident in the care plan. A DMD second opinion can help you gather the best information to make informed decisions about managing DMD and your child’s future.
Why a second opinion can be valuable for DMD care
DMD is a rare disease. Even neurologists with strong training in neuromuscular conditions may have limited hands-on experience managing Duchenne.
Research is also constantly advancing. What was standard two years ago isn’t necessarily standard now. A DMD specialist likely knows which medications were recently approved, which trials are still open, and whether having specific mutations makes you eligible for any experimental treatment.
DMD specialists also tend to have a more nuanced understanding of a DMD treatment plan, including how to tailor physical therapy to disease stage and when to start steroids early to achieve meaningful benefits. They may also offer a fresh perspective on the use of assistive devices or other adaptive equipment.
A second opinion may confirm you’re already on the right track, or it may bring treatment options to your attention you didn’t even know existed.
Approaching your child’s current doctor
Most doctors understand that parents want to explore all options for their child. You don’t need to be apologetic or worried about offending anyone when seeking a second opinion.
You can say something like: “I’d like to get a second opinion to make sure we’re considering every option for my child.” That’s it. A thorough doctor will support your decision and help you get the records you need.
If your child’s doctor seems resistant or defensive, that may be a red flag. DMD care should involve multidisciplinary care to support the whole body, so discussing care plans with other specialists should be encouraged, not frowned upon.
Preparing for a DMD second opinion appointment
Here’s how you can prepare for your appointment.
Gathering records and treatment history
Contact your child’s current doctor’s office and request copies of:
- genetic testing results
- muscle biopsy reports (if these were performed)
- records of all medications and dosages
- physical therapy evaluations and progress notes
- any imaging or cardiac function tests
Many offices can send records electronically to speed up the second opinion process. However, you may prefer to collect the physical documents yourself to make sure all records are accounted for and sent to the appropriate party. You can decide what’s right for you.
Questions to ask your new specialist
When preparing for a DMD appointment with a new specialist, write down your questions beforehand. The stress of the appointment can make you forget what you wanted to ask.
Some questions to consider:
- What’s your experience treating DMD?
- How many DMD patients do you see?
- Do you agree with our current DMD treatment plan?
- Would you change anything about our current DMD treatment plan?
- Are there clinical trials my child might qualify for?
- What should I watch for as DMD progresses?
- How often should my child see their DMD care team?
Evaluating the second opinion
After the appointment, take time to soak in what you’ve learned. If the second doctor agrees with your current care plan, that’s reassuring.
If the doctors disagree, don’t panic. Look at their reasoning. Does one doctor have more experience with DMD? Are they up to date on recent research?
Trust your instincts. Which doctor took the time to explain things clearly? Who made you feel heard? DMD is a progressive disease, and you need a care team you trust as your loved one moves through each disease stage.
Making decisions after a second opinion
You might decide to stick with your current doctor, or you might choose to switch to the specialist who gave the second opinion. Some people even seek a third or fourth opinion.
Some families take what they’ve learned, both from lived experience with DMD and the second opinion, to ask for specific changes to the current care plan. You can take the second doctor’s recommendations back to your original doctor and talk about which changes make the most sense for your child.
If you decide to switch doctors, try to make the transition as smooth as possible. Request that all medical records be sent to the new provider, and schedule a follow-up visit with them soon to ensure continuity of care for your child.
Finding support along the way
Managing DMD can take a toll on you and your family. Though it’s difficult, try your best to take care of yourself and ask for help when you need it.
Organizations like Parent Project Muscular Dystrophy, the Muscular Dystrophy Association, and CureDuchenne connect families with resources, DMD support groups, and information about specialists who treat DMD.
These groups can also help you locate experienced doctors for a second opinion. They may have advice based on how other families have handled similar situations with their DMD care team.
Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
