Linkages is a newsletter for professionals who work with children who have ongoing health conditions or disabilities.
Neuromuscular Disease Resources
For OT/PT’s, nurses, primary care providers, school nurses, teachers and parents.
Assessing Muscle Weakness
- Evaluating Children with Developmental Delay and Muscle Weakness
Clinical pearls for evaluation, signs of weakness, testing and referral, case studies, videos and materials for families.
- Surveillance and Referral Aid for Primary Care Providers
Endorsed by the American Academy of Pediatrics, this Aid includes how to assess weakness by age, clinical evaluation for muscle weakness, guidance on use of CK testing, and the motor delay algorithm.
Spinal Muscular Atrophy (SMA)
- SMA for professionals
Concise fact sheet for providers. Includes diagnostic criteria, SMA characteristics, tests and measures, treatment, intervention strategies and resources.
Duchenne Muscular Dystrophy (DMD)
- Clinical care guidelines by stage of DMD
Brief, one page chart of guidelines for providers.
- DMD Care Brief
Brief and focused single-page snapshot of the imperative components of comprehensive Duchenne care for healthcare providers.
- Vaccine recommendations for individuals with DMD
- Guides to Education for DMD
Teachers Guide provides overview of DMD, progression and treatments, 5 things every teacher should know, talking to your class about DMD, grade specific guidelines and specific challenges and ways to help. Parents’ Guide includes talking to teachers and school administrators, tips for day-to-day interactions, the IEP and sample school scenarios and suggested ways to respond.
- MD-Special Needs Fact Sheet for Teachers
One page overview of MD conditions, what you can expect and tips for teaching and supporting students with MD.
- School Suggestions for Muscular Dystrophy
Accommodations, environmental adaptations and equipment for students with MD.
BrainPOP’s beloved animated duo, Tim and Moby, present the topic of Duchenne in this short, animated movie.
Handouts for Families
- DMD: Understanding and taking care of psychosocial health
- Spinal Muscular Atrophy – ( Also available in Spanish)
- Emergency Care Recommendations in DMD – Families can carry this critical information in their phones with DMD app and in wallets on a prefilled emergency card. Wallet card available in Spanish.
- Hey! I’m Here Too – Booklet for siblings of children with neuromuscular disease.
- About MD – Covers first symptoms, diagnosis, types of muscular dystrophy, caring for a child with MD, physical therapy and treatments. (Spanish version)
- Web Resources for Duchenne and Becker Muscular Dystrophy – Includes information about financial resources, parent support and research.
Save the Date! Duncan Seminar 2018
The 2018 Duncan seminar topic will be “Spina Bifida: Promoting Wellness and Preventing Pitfalls.” The seminar will take place Friday, April 20, 2018 at Seattle Children’s hospital. Sponsored by Seattle Children’s Outreach Education, the Division of Developmental Medicine and Seattle Children’s Center for Children with Special Needs.