A diagnosis of Duchenne muscular dystrophy (DMD) is the start of a long and medically complex journey. Saved medical records provide a detailed history of treatments and disease progression and can help you communicate with your child’s healthcare team — but keeping track of all the test results, hospital records and more is easier said than done. Here are some tips to help.
What to include in your child’s medical records
A complete medical history will track the evolution of the disease from the moment of diagnosis to the current day. Save all information related to:
- Diagnosis: Results from genetic tests, muscle biopsies and creatine kinase tests.
- Paperwork: Medical insurance claims, participation in research and disability forms should all be saved.
- Healthcare team details: Save names and contact details of each specialist your child visits. Also record a short summary of each doctor’s appointment and hospital visit.
- Medications: Keep a list of medications consistently updated. Also save copies of past prescriptions. Record the details of any side effects.
- Symptoms: Record the progression of symptoms such as walking, muscle weakness, respiratory issues and heart problems.
- Physical therapy plans: Save the details of physical therapy and respiratory therapy plans; these will evolve as Duchenne progresses.
- Test results: Save all results from cardiac monitoring and pulmonary monitoring.
- School-related information: Save school contacts, assessments, and IEP/504 documentation.
- Research: Keep information on clinical trials, new treatments, new assistive devices or other developments so you can discuss them with your child’s care team.
- Emergency plans: Emergency contact details, ventilation instructions and steroid dosage information should all be kept ready; also have an emergency card detailing your child’s specific needs.
Learn more about DMD treatment and care
How to organize medical records for DMD
All of these records add up, so finding an organization system that works for you is important. The goal is to build a filing system that makes managing all your child’s DMD-related paperwork, contacts, appointments and treatment info take as little effort as possible.
First, decide if you’d prefer physical copies or digital copies.
With a well-organized system, paper copies can sometimes mean less work. Binders are an excellent option for physical copies. You can divide them into color-coded sections per category and insert the documents in chronological order. You’ll need to be consistent to keep them up-to-date and be prepared to create space on your bookshelf, as the volume of medical records grows over time.
Digital records might require some scanning, but they also mean your records can be accessed from anywhere. Digital options include:
- Digital files in folders on your computer or in the cloud for easy access from your computer or smartphone.
- Applications or patient portals used by some hospitals and clinics.
Be sure to keep backup copies of digital files if they are stored on a computer, in case it crashes or breaks.
Benefits of keeping up-to-date medical records
Though it can be a lot of work — on an already-full plate — keeping thorough medical records is worth it. An up-to-date medical record system is invaluable if you need to share information with new medical providers, refer to previous care or check how Duchenne symptoms have progressed. Over the years, it’s easy to forget details; your child’s medical records will fill in the blanks.
A clear, detailed medical history will also assist you (and when they’re old enough to manage their own care, your child) when communicating with neurologists, cardiologists, physical therapists and other specialists on your child’s care team.
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