September 7th is World Duchenne Awareness Day, a time to shine a light on Duchenne Muscular Dystrophy (DMD) and the children and families living with it. In past posts- like our Exercise and International Day of Persons with Disabilities and Rare Disease Day Blog– we’ve touched on some therapy approaches, but today we’ll take a closer look. Recommendations provided by the Duchenne Care Considerations emphasize that physical therapy is a vital part of a child’s care team, working alongside families, doctors, and other specialists to help each child reach their best potential.
Duchenne Muscular Dystrophy is a progressive genetic condition. It causes muscle weakness over time that lead to difficulties with walking and performing daily tasks like feeding. While there is no cure for DMD, there are ongoing clinical trials and newer FDA approved treatments available. Early and consistent support from a pediatric physical therapist can prevent or delay complications, help children stay active, assist with energy conservation, and participate fully in daily life.
Here are five ways a pediatric physical therapist helps children with DMD thrive in every stage:
- Stretching to Maintain Range of Motion
The natural history of DMD shows that children will develop contractures, or limited range of motion, as they get older. Earlier on in the disease, we start to see limitations at the ankle. Your physical therapist may recommend specific stretches, night splints, or serial casting to delay and limit the severity of the contractures.
Examples: A common night splint is the DAFO-9, listed below from cascade.
- Monitoring functional outcome measures
The North Star Ambulatory Assessment and Timed Tests should be done every 6 months. These tests are validated in the DMD population and have predictive capabilities. The scores on these tests can help your therapist be proactive with treatment recommendations and assist with additional clinical decisions.
- Exercise
Strengthening has been a topic of conversation as different modes of medical treatment become available. The type of exercise is important to consider. The No Use is Disuse study supports a low intensity cycling program. A physical therapist will be vital in assessing and monitoring exercise tolerance, intensity, and progression/modification.
- Education and support
Each stage of development will look differently when growing with DMD, and their needs change as they grow. For instance, steroid use combined with muscle weakness increase the risk of fractures. Your therapist will collaborate with you to develop tailored strategies to address these challenges. Guidance can also be provided on safe activities, positioning, and daily routines throughout every phase of life.
Parent Project Muscular Dystrophy (PPMD) and Muscular Dystrophy Association (MDA) is a national organization that helps supports families and provides education and advocacy.
- Equipment Recommendations
Promoting your child’s independence is a key goal. Your therapist may recommend orthotics, standing devices, and manual or power mobility devices.
FAQs
Q: What is the common age of diagnoses?
A: This typically occurs around 5 years old, however, symptoms are often seen prior
Q: What are the signs and symptoms seen in the earlier ages?
A: Gower’s sign (using the hands to push and climb on the legs when standing up), difficulty climbing stairs, difficulty jumping, clumsiness and tripping, toe walking, enlarged calves, and weakness.
Q: Why is it important to find a physical therapist knowledgeable about DMD?
A: A physical therapist that is knowledgeable about different DMD treatment options, understand the DMD natural history, and be aware of the most up to date physical therapy research and recommendations will be able to advocate best for your child. This can look like proactive exercises to prevent range of motion limitations or even equipment recommendations to help your child thrive.
Q: Where can I find experienced care for Duchenne Muscular Dystrophy in the Savannah, GA area?
A: At Savannah Speech & Hearing Center, our pediatric physical therapist has experience working with children of all ages diagnosed with DMD – from infants and toddlers to teens and adolescents. We offer individualized, age appropriate physical therapy interventions that help support mobility at every stage of development.
Have questions about DMD care? Contact us today to learn how pediatric physical therapy can help your child thrive.
Resources
Birnkrant DJ, Bushby K, Bann CM, Apkon SD, Blackwell A, Brumbaugh D, Case LE, Clemens PR, Hadjiyannakis S, Pandya S, Street N, Tomezsko J, Wagner KR, Ward LM, Weber DR; DMD Care Considerations Working Group. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. Lancet Neurol. 2018 Mar;17(3):251-267. doi: 10.1016/S1474-4422(18)30024-3. Epub 2018 Feb 3. Erratum in: Lancet Neurol. 2018 Jun;17(6):495. doi: 10.1016/S1474-4422(18)30125-X. PMID: 29395989; PMCID: PMC5869704.
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