Assisting families through a crisis can be daunting. Some guidance is provided below. Our Medical Advisory Board is also available to consult at such times.
Emergency Room Protocol
To be filled out ahead of time, this descriptive emergency care aid for each individual Alternating Hemiplegia of Childhood (AHC) patient assists in evaluating and understanding the scope of care needed for an AHC patient in crisis.
End-of-Life Considerations
Alternating Hemiplegia of Childhood is not considered to be progressive in nature nor life-shortening per se. However, some individuals have lost their lives prematurely from complications of the disease or a compounding condition due to respiratory complications, uncontrolled seizures, heart issues, a decreased capability to fight off infections, etc…
The AHC community is working to understand under what circumstances these unfortunate and rare events happen. We are working together with researchers to develop protocols that will guide the family when an end-of-life crisis arises and assist them in understanding the difficult options they may consider, which will ultimately help the whole AHC community.
