I recently became a home health nurse to a 17mth old boy who is terminally ill.  He was not expected to last six mths. so everyday is a blessing.  This neurological disorder is kinda like a severe form of epilepsy, approx. 200-300 seizures per day.  I would be interested if anyone has any information they would like to pass on.

Yes.  Most of his seizures are myoclonic or petite mal but on occassion he has clonic-tonic ones and has needed CPR once and rescue breathing once.  He has a cardiac/apnea monitor that can be placed on him but it does not alarm until he has gone 20secs. without a breath or unless his HR is <50 or >265.  I spend a lot of time watching chest rise and fall.