Building Your Child's DMD Care Team

Caring for a child with Duchenne muscular dystrophy (DMD), a condition that makes muscles weaker over time, will likely involve a team of different doctors and therapists. This is called a multidisciplinary care team. Ideally, this team will work together to give your child the best care possible. Each person on the team has special skills to help with different needs.¹

Why is a multidisciplinary team important?

A multidisciplinary team brings together experts from different medical fields. For a child with DMD, this is crucial because DMD is a serious, life-altering condition. DMD affects many parts of the body and your child will need medical care for the rest of their lives.^1,2

For those with DMD, a multidisciplinary neuromuscular team is vital. This can include:^1-3

• Care coordinator
• Neurologists
• Pulmonologists
• Cardiologists
• Physical and occupational therapists
• Genetic counselors
• Other specialists

This team approach ensures all of a child's complex needs are met comprehensively. This can lead to better symptom management and overall quality of life.^1,2

Care coordinator

Care coordinators are essential anchors for a DMD care team. They act as central points of contact, helping families navigate the complex web of appointments, therapies, and medical information.^1-3

By facilitating communication between different specialists, the care coordinator ensures seamless and integrated care. They can help:^1-3

• Schedule appointments
• Manage paperwork
• Connect families with necessary resources and support services
• Answer questions and concerns about your overall care

This streamlined approach improves efficiency and ensures that all aspects of your child's care plan are well-coordinated and effectively implemented. Having a care coordinator dedicated to your child’s treatment plan reduces the burden on caregivers. It allows you to focus on your child instead of getting bogged down with logistics.^1-3

Neurologist

One of the most important doctors for a child with DMD is a neurologist. Neurologists specialize in treating diseases that affect the brain, spinal cord, and nerves. They can tell if your child has DMD and can help manage muscle weakness. They will check how strong your child’s muscles are and how they move.^1-3

The neurologist will also work with the other team members to plan your child’s care. Children with DMD need to see a neurologist early.^1-3

Pulmonologist

A pulmonologist is a lung doctor. As DMD gets worse, the muscles that help with breathing can become weak. The pulmonologist will watch your child’s breathing and help prevent lung problems. They might suggest exercises or tools to make breathing easier. Regular visits with the pulmonologist are very important. Taking care of breathing problems early is key for people with DMD.^2,3

Cardiologist

Heart problems can happen in children with DMD. That is why a cardiologist is part of the team. Cardiologists are heart doctors. They will check your child’s heart regularly using tests like ECGs and echocardiograms. If heart problems start, the cardiologist will help treat them to keep the heart strong for as long as possible. It is important to check the heart regularly when a child has DMD.¹

Physical therapist

Physical therapists (PTs) are experts in movement. They help your child stay strong, flexible, and able to move. PTs create exercise plans that are safe and fun. These exercises can help your child stay active and independent longer. They can also teach you how to help your child with everyday activities. Physical therapy is very important for managing the physical effects of DMD.^1-3

Occupational therapist

Occupational therapists (OTs) help your child with everyday tasks. This includes things like getting dressed, eating, and writing. OTs can suggest tools and ways to make these tasks easier. They work to help your child be more independent and have a better quality of life. Occupational therapy can greatly improve what children with DMD can do every day.^1-3

Genetic counselor

A genetic counselor knows about conditions like DMD that are passed down through families. They can explain the genetic parts of DMD to your family. They can also talk about the chances of other family members being affected.³

Genetic counselors can give you emotional support and connect you with helpful resources and support groups. Talking to a genetic counselor is very helpful for families dealing with DMD.³

Other specialists

Other specialists that your child might see can include:^2,3

• Social worker – Provides emotional support, connects families with resources, and helps navigate the challenges of DMD.
• Nutritionist – Ensures your child receives proper nutrition for energy, growth, and managing potential weight changes.
• Speech/language therapist – Addresses communication and swallowing difficulties that can arise due to muscle weakness.
• Physiatrist – Focuses on physical medicine and rehabilitation to maximize function and quality of life.
• Palliative care specialists – Offer support and comfort for your child and family throughout all stages of DMD.

Finding and working with your team

Finding these specialists might take some time. Your neurologist can often suggest other doctors and therapists. You can also ask your family doctor for recommendations. Groups like the Muscular Dystrophy Association (MDA) and Parent Project Muscular Dystrophy have clinic and specialists resources on their sites.

Working well with your child’s care team is very important. Be open and honest with everyone about how your child is doing and what they need. Ask questions if you do not understand something. Make sure the different specialists share information with each other. This helps everyone work together to give your child the best care.

Remember, you are a very important part of this team, too. What you see and know about your child is very valuable. Together, you and the care team can help your child with DMD live a good and meaningful life.