Confirm the genetic report, establish a Duchenne-experienced neuromuscular team, collect baseline cardiac/respiratory/therapy assessments, and ask for a written care plan and social-work referral.
What this means in real life
The first month is mainly about confirming what is known, assembling the right team and creating a baseline. Ask for the complete genetic laboratory report—not only a note that says “positive for Duchenne.” The report should name the exact DMD variant and whether it is classified as pathogenic or likely pathogenic. A genetics professional can explain inheritance, carrier testing and whether the mutation is relevant to an approved treatment or trial.
A Duchenne-experienced neuromuscular clinic should coordinate care, but cardiology, pulmonary care, physical or occupational therapy, nutrition, bone/endocrine health and psychosocial support should begin before symptoms become urgent. Baseline assessments show where things stand now and make later changes easier to interpret. This does not mean every test or treatment must happen in the first appointment; it means the family should leave with a coordinated plan, named contacts and dates for the next steps.
Also collect records in one place: genetic report, CK result, medication list, vaccination record, therapy evaluations, insurance information and emergency contacts. Ask the clinic for a social-worker or navigator referral. Early help with school, insurance, benefits and emotional support is part of care—not an afterthought.
A practical checklist
- ✓
Obtain the full genetic report and schedule genetic counseling.
- ✓
Establish a multidisciplinary Duchenne clinic and identify the care coordinator.
- ✓
Request baseline cardiac, respiratory, functional, therapy, growth and bone-health planning.
- ✓
Create a shared record folder and a written 30-, 60- and 90-day plan.
- ✓
Ask who to call after hours and what information belongs in an emergency packet.
Questions to bring with you
Use these at the clinic, school meeting, equipment evaluation, program interview or benefits call. Write down the answers and who owns the next step.
- Is the genetic result definitive, and is any additional testing needed?
- Which assessments should happen now versus at the next visit?
- Who coordinates the different specialists and insurance authorizations?
- What treatment decisions are time-sensitive, and which can wait while we learn?
- Where can our family get emotional, school and financial-navigation support?
Important safety note
This topic can involve serious or immediate risk. Do not start, stop or change treatment from an online answer. Contact the Duchenne care team; use emergency services for urgent symptoms or danger.
Sources used for this guide
Direct links are included so families can check the original guidance and bring it to qualified professionals.
Content review: July 18, 2026. Medical labels, trials, benefits and programs can change after publication.
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