What you need to know
- Certain muscular dystrophies have special diets or dietary restrictions. It is important to discuss dietary needs of the child with the parents. If there isn’t a special diet required for an individual, a well-balanced diet is important.
- When the muscles used in swallowing and chewing are weakened, there’s a risk of dehydration, malnutrition, choking, or respiratory infections caused by inhaling food or liquid into the lungs (aspiration).
- Gastrostomy (G-tube) tube may be required
- If acid reflux is present, allow child to keep antacids in nurse ‘s office
- It is important to discuss the nature of the student’s condition and implications for school activities. The child’s physicians will determine the student’s permitted activities and levels.
- School age children with neuromuscular disorders may have multiple doctors and specialist visits to monitor medical conditions.
- In almost everyone with a neuromuscular disease, bladder and bowel control are normal, although students may need help in the bathroom as their physical abilities weaken.
- If diabetes is present, follow care plan for that student.
What you can do
- A yearly check-up and studies as needed should occur in the child’s Medical Home.
- Be aware of any changes in behavior or mood that seem unusual and notify the parents.
- Be aware of any academic changes. Contact parents when any differences are noticed.
- Accommodate students who may need to visit the nurse to take medications during school.
- Be aware that the student will often have increased susceptibility and life threatening consequences of respiratory infections:
- Yearly administration of pneumococcal vaccine and influenza vaccination
- (RSV) vaccine should be considered.
- Any infection should be treated promptly before it progresses to a serious illness.
- Ensure exposure to sunshine and a balanced diet rich in Vitamin D and calcium to improve bone density and reduce the risk of fractures.
- Know the signs and symptoms of heart failure and or breathing difficulties.
- Be aware of how to support a student who has diabetes (if the child is diagnosed with diabetes).