Diagnosis: West syndrome, intractable seizures
Treatment: S9123 & S9124 - Private duty nursing, ten hours/day, seven days/week

The private duty nursing, ten hours/day, seven days/week, is medically necessary.

According to the American Academy of Pediatrics Guidelines for Home Care of Infants, Children, and Adolescents with Chronic Disease, "comprehensive planning should minimize physical and emotional risk to the patient, adverse effects on family members, or unforeseen financial burdens." (1) Further, "the goal of a home health care program for infants, children, or adolescents with chronic conditions is the provision of comprehensive health care within a nurturing home environment that maximizes the capabilities of the individual and minimizes the effects of the disabilities." (1)

This female child has a number of medical needs as a result of and in addition to her diagnosis of West syndrome with intractable epilepsy. She requires constant supervision to allow for rapid intervention for seizure activity. She cannot eat by mouth, and is dependent upon gastrostomy tube feedings. She requires airway clearance with non-invasive ventilatory support during sleep. She is fully dependent upon caregivers to manage all of her needs, and most importantly to recognize seizures and provide the necessary emergency care. She has two levels of emergency care, midazolam nasal spray and rectal Diastat. Both of these medications are effective at seizure control, but both are also sedatives and if used in combination place the child at risk for hypoventilation and even respiratory failure. Judicious use of these medications in combination with close monitoring and intervention as needed can keep this child safe and even prevent unnecessary hospital visits. However, this is not appropriate for layperson caregivers. This type of management is akin to that received in the hospital setting, specifically the intensive care unit (ICU), and belongs in the hands of skilled nursing staff.

Based on this child's very complex history and current needs, the requested ten hours/day, seven days/week of private duty nursing services are not custodial in nature and are medically necessary and appropriate.