What you need to know
Treatment involves managing the following:
- 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
- Congestion
- Infections
- Obstructions
- Pneumonias
- These may be a result of aspiration
- Scoliosis and or kyphosis
- Hip problems
- Reflux
- Constipation
- Digestive 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.