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Medical / Dietary Needs

What you need to know

Treatment involves managing the following:

Seizures
  • Be aware, or ask parent, if the child has a medical alert bracelet
  • May have startle seizures in response to sudden sounds
  • Multiple medications may be necessary
  • Certain diets may help control seizures
  • May have a Vagus Nerve Stimulator to help reduce seizure activity
  • Anecdotal reports of reduced seizure activity with medical marijuana
Respiratory Problems
  • Congestion
  • Infections
  • Obstructions
  • Pneumonias
  • These may be a result of aspiration 
Orthopedic Problems
  • Scoliosis and or kyphosis
  • Hip problems
Gastrointestinal Problems
  • Reflux
  • Constipation
  • Digestive issues
Feeding Issues
  • May be able to eat and chew typically
  • May have swallowing difficulties
    • A g-tube may help reduce aspiration and increase fluid intake. It is especially helpful during colds/ illnesses when eating and drinking may be more difficult.

What you can do

Regular visits to doctors and specialists to help manage different challenges, as needed.

  • Primary care doctor and care coordinator
  • Ophthalmologist
  • Orthopedist
  • Gastro-intestinal doctor
  • Neurologist
  • Endocrinologist

Seizures

  • To minimize startle seizures: Give verbal warnings if anticipate loud noises (machines, vacuum cleaner, stapler, blender, etc)
  • Develop and implement seizure protocol for seizures at school
  • If child has a Vagus Nerve Stimulator (VNS), those people supporting the child should know how to use the magnet to activate the VNS. This information should be part of  theof the seizure protocol.