Build Your Care Team
Your Extended Care Team
The Specialists Who Help Support Your Child Throughout the Duchenne Journey
After a Duchenne diagnosis, it can feel like you've suddenly been introduced to an entirely new world of healthcare.
You've probably already met a neurologist, maybe a genetic counselor, and perhaps you've been told you'll also need to see a cardiologist, pulmonologist, physical therapist, and several other specialists.
It can feel overwhelming.
Here's something we hope brings you a little peace: You are not expected to build your child's entire care team today.
One of the greatest strengths of modern Duchenne care is that many different specialists work together to help children stay healthier, more comfortable, and more independent throughout their lives.
Some of the professionals below may become part of your child's journey within the first year.
Others may not become involved for many years.
Some families may never need certain specialists at all.
That doesn't mean you're behind.
It simply means every child with Duchenne has a unique journey.
This page is here to help these professionals feel familiar before you meet them and to help you understand how each one contributes to your child's care.
Nutrition & Growth
Helping Your Child Grow, Thrive, and Stay Healthy
Nutrition is about much more than simply eating healthy foods. Children with Duchenne often have changing nutritional needs throughout childhood because of growth, steroid medications, muscle health, activity levels, and, later, swallowing challenges. Your nutrition team works to help your child receive the right nutrition at the right time while preventing problems before they develop.
Who You May Meet
Registered Dietitian
A registered dietitian specializes in nutrition. They help monitor healthy growth, recommend balanced nutrition, answer questions about supplements, and help manage challenges such as weight gain, poor appetite, constipation, or steroid-related nutritional concerns.
Many families meet with a dietitian shortly after diagnosis to establish healthy habits that can support their child for years to come.
Feeding Specialist
Some children experience challenges with chewing, swallowing, or eating safely as they grow older.
A feeding specialist evaluates these concerns and teaches strategies that make meals safer, easier, and more enjoyable.
Most newly diagnosed children will not need this specialist immediately, but it's helpful to know they're part of the care team if needs change in the future.
Gastroenterologist (GI Specialist)
A gastroenterologist specializes in the digestive system. They may help manage:
- Constipation
- Acid reflux
- Stomach discomfort
- Swallowing concerns
- Nutrition
- Feeding tube discussions if ever needed
Many children with Duchenne experience constipation at some point, making GI specialists valuable partners throughout the journey.
Hormones, Growth & Bone Health
Helping Your Child Grow Strongly and Safely
Because steroid medications play an important role in Duchenne care, your child's doctors will also pay close attention to growth, puberty, hormones, and bone health. This doesn't mean they expect problems. It means they're working to prevent them.
Who You May Meet
Endocrinologist
An endocrinologist specializes in hormones and growth. They monitor:
- Growth
- Puberty
- Bone health
- Vitamin D
- Calcium
- Blood sugar
- Adrenal function
- Steroid-related side effects
Their goal is to help your child grow as healthily as possible while balancing the benefits and risks of long-term steroid treatment.
Bone Health Specialist
Some hospitals have physicians who focus specifically on bone health.
They may recommend bone density testing, evaluate fractures, or help reduce the risk of osteoporosis as your child grows older.
Emotional Well-Being
Caring for the Whole Child—and the Whole Family
Living with Duchenne affects much more than muscles. It affects emotions, relationships, school, confidence, and daily routines. Asking for emotional support isn't a sign that something is wrong. It's another way of taking care of your family.
Who You May Meet
Psychologist
A psychologist helps children and families navigate the emotional side of living with Duchenne. Support may include:
- Anxiety
- Grief
- Depression
- Adjustment after diagnosis
- Behavioral concerns
- Coping strategies
Many psychologists also help siblings and parents process the emotional challenges that come with caring for a child with a chronic illness.
Psychiatrist
If medication becomes part of treating anxiety, depression, ADHD, or other mental health concerns, a psychiatrist may join your child's care team.
Child Life Specialist
Child Life Specialists help children understand medical procedures using age-appropriate education, play, and preparation.
Their goal is to reduce fear and help children feel more confident during hospital visits.
Many parents wish they had known about Child Life services sooner.
Behavioral Therapist
Some children benefit from additional support with attention, emotional regulation, behavior, or executive functioning.
Behavioral therapists work closely with families to develop practical strategies that make everyday life easier.
Learning & Development
Helping Your Child Succeed at School and Beyond
Many children with Duchenne are bright, curious learners. Some also experience learning differences related to attention, processing speed, executive functioning, speech, or language. Understanding how your child learns helps ensure they receive the support they need to thrive.
Who You May Meet
Neuropsychologist
A neuropsychologist evaluates how your child learns. Testing may include attention, memory, executive functioning, language, and problem-solving skills.
These evaluations often provide valuable information for schools when developing accommodations.
Speech-Language Pathologist
Speech therapists don't only help children who have difficulty speaking.
They may also assist with language development, communication skills, swallowing, and later, voice changes.
School Support Team
Your child's educational team may include:
- School Nurse
- Teachers
- Special Education Staff
- 504 Coordinator
- IEP Team
- School Psychologist
Together, these professionals help ensure your child has the accommodations and support needed to participate fully in school.
Independence & Daily Living
Helping Your Child Do More—Not Less
One of the biggest goals of Duchenne care is preserving independence. That doesn't always mean doing everything without help. Sometimes it means finding new ways to accomplish the same goals.
Who You May Meet
Occupational Therapist
Occupational therapists help children remain as independent as possible with everyday activities.
They may recommend adaptive equipment, teach energy conservation strategies, and help with dressing, bathing, eating, handwriting, computer access, and self-care.
Assistive Technology Specialist
These specialists help families identify technology that supports communication, education, computer access, environmental controls, and independence.
Technology often opens new doors rather than replacing existing abilities.
Seating & Mobility Specialist
These specialists evaluate wheelchairs, seating systems, standing devices, and positioning equipment.
Their goal isn't simply mobility.
Their goal is helping your child continue participating in school, family activities, travel, hobbies, and everyday life.
Community Support
Helping Families Navigate Everyday Life
Not every challenge comes from a medical condition. Sometimes families need help with insurance, transportation, equipment, financial assistance, or community resources. These professionals help connect families with the support systems that make daily life easier.
Who You May Meet
Social Worker
If we had to recommend one specialist every newly diagnosed family should get to know, it would probably be the social worker.
Social workers help families navigate:
- Insurance
- Financial assistance
- Transportation
- Community programs
- Disability resources
- School services
- Emotional support
They often know about resources families don't even realize exist.
Case Manager
Case managers help coordinate appointments, referrals, insurance approvals, and communication between specialists.
Some hospitals and insurance companies provide case management services.
Durable Medical Equipment (DME) Provider
DME providers supply and maintain equipment such as:
- Wheelchairs
- Bath chairs
- Patient lifts
- Hospital beds
- Respiratory equipment
They also assist with repairs, adjustments, and equipment training.
Home Health Services
Depending on your child's needs, families may eventually work with:
- Home Health Nurses
- Personal Care Attendants
- Home Health Aides
These professionals provide additional support at home and help families manage more complex care needs.
Research & Clinical Trials
Learning About Future Opportunities
Some families choose to participate in research. Others do not. Both are valid decisions. Your care team should provide information—not pressure.
Who You May Meet
Clinical Research Coordinator
Clinical Research Coordinators help families understand available studies, eligibility requirements, study schedules, and what participation involves.
Their role is to answer questions and provide information so your family can make informed decisions.
Study Nurse
Study nurses help coordinate research visits, explain procedures, and provide ongoing support for families participating in clinical trials.
Common Myths
Myth: "We need to see every specialist immediately."
Reality: No one expects you to build your child's entire care team in the first few weeks after diagnosis. Most families add specialists gradually over months and years.
Myth: "If we're seeing more specialists, my child must be getting worse."
Reality: Many specialists become involved simply because Duchenne affects different parts of the body over time. Their goal is prevention, not just treatment.
Myth: "If my child feels fine, we don't need these providers."
Reality: Many specialists monitor your child before problems develop. Early care often leads to better long-term outcomes.
Myth: "Only the neurologist really matters."
Reality: Your neurologist helps coordinate care, but every member of your child's team brings unique expertise. Together, they help care for your child's heart, lungs, bones, nutrition, emotional well-being, independence, and overall quality of life.
Questions You May Want to Ask
Before You Leave
Before leaving today's appointment, make sure you know:
- Which referrals should be scheduled now
- Which specialists will likely become important later
- Who coordinates your child's overall care
- Who to call if questions come up
- What your next priority should be
Remember:
You don't have to build the entire care team today.
Just focus on the next step.
What We Wish
Someone Had Told Us
Honest advice and lessons learned from Duchenne families who've been there.
When we were first diagnosed, it felt like someone handed us a phone book of specialists and expected us to know who everyone was. We couldn't remember the names. We definitely couldn't remember what they all did. And honestly, we worried that every new referral meant something else had gone wrong.
Looking back, we realize that wasn't true at all. Our care team didn't appear all at once. It grew alongside our child.
Some people became part of our lives immediately. Others we didn't meet for years. Each one arrived when they had something meaningful to contribute.
You don't need to memorize every specialty today. You don't need to understand every test or every title. You simply need to know that you don't have to walk this journey alone.
Over time, these professionals stop feeling like strangers. They become familiar faces. They celebrate milestones with you. They answer late-night questions. They help carry the weight on days when it feels especially heavy.
And one day you'll realize something that seemed impossible at the beginning: You're no longer trying to figure out who everyone is. You've built a team. One relationship at a time.