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Medical / Dietary Needs

What you need to know

The list of possible medical problems in NS may be quite extensive. However, each individual usually has only some of these problems. Also, the severity of any one of these medical problems varies widely between individuals.  Therefore, it is important to ask the parents about the medical issues in their child.

  • School age children with NS may have frequent doctor and specialist visits to monitor medical conditions.
  • Do not give aspirin as it may cause bleeding problems in children who have the coagulation problems. 
  • It is important to let parents know if the child has headaches or any other neurological symptom, as this may be indicative of an underlying cause. 
  • There may be issues affecting attendance due to cardiac involvement, low, tone, or leg pain.
  • No special diet is required for NS, although a well-balanced diet is important. 
  • Be aware, or ask a parent, if the child has a medical alert bracelet.

Learn more.

What you can do

  • A yearly check up and studies as needed should occur in the child’s Medical Home (their primary care office). 
    • Discuss pain management plan with parents.
      • Discuss the use of anti-inflammatories as appropriate.
      • Ensure proper storage of ice/gel packs at school.
      • Avoid aspirin
    • Individuals may complain of frequent stomach-aches due to reflux, delayed emptying, irritable bowel, etc. A plan should be in place for dealing with these symptoms at home and at school.
    • Important to address injuries quickly
  • Notify the parents of any pain.
  • Be aware of unusual changes that seem out of line with the situation, and notify parents.
    • Energy level
    • Behavior
    • Mood
    • Academic performance
    • Social