DOCTORS OFTEN CANNOT PREDICT OUTCOMES FOR NORSE PATIENTS.

In other words, doctors often don't know for sure what will happen in the case of a particular patient.  While it is painful to consider bad outcomes, it is helpful in the long run to have a continuous dialogue with the doctors to prepare for the outcomes that are most likely.  After NORSE patients are discharged from the hospital, many will need significant rehabilitation, usually in a rehabilitation facility.  The hospital social worker can identify the best rehabilitation facility for the patient. 

MEDICAL & REHABILITATION BILLS

The medical and rehabilitation expenses for NORSE can be staggering. There is help to sort through the process of medical coverage and bill payment. Before leaving the hospital, speak with the hospital social worker who can help you identify programs to help pay for medical and rehabilitation bills.  Programs may be specific to the hospital, the state in which the patient was hospitalized, and the state in which the patient resides. In particular, families should know that NORSE patients may be eligible for acquired brain injury (ABI) programs and benefits. A formal diagnosis of ABI may be needed to be eligible for these programs.  

MEDICAID WAIVER PROGRAMS

Waiver programs can provide additional or primary insurance coverage as well as access to home-based services through Medicaid that the patient ordinarily would not qualify for due to income restrictions.  These waiver programs, specifically those that cover acquired brain injuries, would "waive" the income restrictions depending on the patient's needs and diagnosis.  The administration of this federal program varies from state to state.  Search "TBI/ABI medicaid waiver programs in (your state.)"  An overview of acquired brain injury waiver programs and other long-term care supports are available here

  • This website provides links to children's medicaid waiver programs state by state.
  • Short overview from US News and World Report covers things you can do when faced with medical bills you cannot afford, and links to medical coverage sites. 
  • Federal website contains links to state and federal programs that may help pay for medical and prescription bills.  Includes links to Social Security and Medicare, Medicaid, Veterans and Eldercare.  

Most medical bill paying assistance will come from the state and federal government programs. There are some private foundation grants that may cover some medical expenses as well.  

COMMUNICATING WITH DOCTORS AND MAKING DECISIONS ABOUT PALLIATIVE OR COMFORT CARE

Here are some sample questions to help guide these difficult decisions.

NORSE requires urgent, specialized neurological care. The Critical Care EEG Monitoring Research Consortium is comprised of members with this medical expertise and who are affiliated with medical centers that have the comprehensive monitoring technology required.  The NORSE registry is being conducted through this consortium.  Although this list of epileptologists and medical centers does not represent a complete list of doctors and facilities that can effectively treat NORSE, it is one place to start a search.