When your child experiences a sudden illness or injury, preparedness is paramount, especially if they are diagnosed with Duchenne Muscular Dystrophy (DMD). Having immediate access to crucial medical information can significantly aid emergency staff in providing the best possible care. This guide outlines essential considerations and the urgent care MDS protocol to ensure accurate diagnosis and effective management during emergency situations.
Key Contact Information for Emergency Situations
In any hospital emergency, actively participating in your child’s care plan is vital. Besides presenting your PPMD emergency card or utilizing the PPMD app, ensure a physician experienced in Duchenne is promptly involved. To facilitate this, Parent Project Muscular Dystrophy (PPMD) provides a comprehensive list of contact numbers for each of their Certified Duchenne Care Centers (CDCCs). Having a Duchenne specialist engaged from the outset can be crucial for guiding the care plan effectively.
General Emergency Recommendations and Precautions
Several critical areas require specific attention when a person with DMD needs urgent care. These include respiratory issues, bone injuries, dental procedures, pain management, surgical considerations, and managing corticosteroid intake during illness.
Addressing Breathing Problems
Respiratory difficulties such as shortness of breath are serious concerns. Remember these key points:
- Risk: Respiratory failure is a primary risk.
- Oxygen Administration: Administer oxygen only with careful monitoring of CO2 levels. Ventilatory support, such as BiPAP, may be necessary.
- Assisted Coughing: If oxygen levels are low, techniques like assisted coughing using a cough assist machine or Ambu bag can be beneficial.
- Equipment and Communication: Always bring essential respiratory equipment (cough assist, BiPAP) to the hospital and inform your neuromuscular team about the emergency.
- Further Reading: For in-depth information, explore resources on pulmonary care in Duchenne.
Managing Broken Bones, Falls, and Trauma
In cases of suspected fractures, falls, or trauma, be mindful of the following:
Fat Embolism Syndrome (FES) Risk:
- Rarity: FES is an extremely rare but serious complication.
- Mechanism: It occurs when fat particles enter circulation, reducing oxygen supply to vital organs like the heart and brain.
- Causes: Typically associated with long bone or pelvic fractures and significant trauma; rarely from orthopedic surgery.
- Symptoms: Be vigilant for shortness of breath or neurological symptoms following a fracture, fall, or trauma, as these could indicate FES.
- Further Reading: Learn about FES symptoms and management strategies in dedicated resources.
Considerations for Dental Procedures
When undergoing dental procedures, specific precautions are necessary for individuals with DMD.
Effective Pain Management Strategies
Pain in Duchenne can stem from various underlying issues. For effective pain management in an emergency setting:
- Comprehensive Evaluation: Provide detailed information about your child’s condition to facilitate a thorough evaluation by the emergency room staff.
- Accurate Diagnosis: This detailed information aids in quickly diagnosing the pain’s cause.
- Appropriate Pain Management: With a clear diagnosis, pain can be managed effectively and appropriately.
Surgical and Anesthesia Guidelines
For any planned or emergency surgical procedures, specific anesthetic considerations are crucial:
- Inhaled Anesthesia: Avoid inhaled anesthesia if possible.
- IV Anesthesia: Intravenous anesthesia is generally considered safe but requires careful monitoring.
- Succinylcholine: Succinylcholine is contraindicated for individuals with Duchenne.
- Local Anesthetics & Nitrous Oxide: These are safe options for minor dental procedures.
- Anesthetic Safety Guide: Consult a complete list of safe and unsafe anesthetics for detailed guidance.
Addressing Vomiting and Corticosteroid Management
If vomiting occurs or oral corticosteroids cannot be taken for 24 hours, immediate action is needed:
- Neuromuscular Specialist: Contact your neuromuscular specialist to inform them about the situation and the emergency room visit.
- PJ Nicholoff Steroid Protocol: Bring the PJ Nicholoff Steroid Protocol to the emergency room.
- IV Corticosteroids: Request intravenous corticosteroid administration until oral medication is tolerated (note the conversion: 6 mg deflazacort = 5 mg prednisone).
- Agamree (vamorolone): Agamree cannot be used for stress dosing.
- Liver Enzymes: Inform clinicians that elevated liver enzymes (AST/ALT) are typical in DMD.
- Steroid Information: Access further details about steroid use and management in Duchenne.
Keeping Emergency Information Accessible
Beyond this article, ensure you have readily available resources at all times:
PPMD Mobile App
Download the Parent Project Muscular Dystrophy App for both iPhone and Android. It provides instant access to emergency care information directly on your smartphone.
Wallet-Sized Emergency Card
Order a wallet-sized emergency information card. This essential card facilitates communication with doctors, nurses, and hospital staff if your child requires urgent medical attention. Available in both English and Spanish.
Large Emergency Information Card
Consider a larger, weatherproof emergency card designed for wheelchairs, scooters, and backpacks. These double-sided cards are available in English and Spanish and provide comprehensive information for both families and healthcare professionals, ensuring all critical details are immediately accessible in emergency situations.
By being well-informed and prepared with the urgent care MDS protocol, you can significantly enhance the quality of emergency care your child receives, ensuring prompt and appropriate diagnosis and management of any health crisis.
