I have the chronic form of SCLS, where the swelling and resolving are milder but persistent and frequent. On Sunday, I experienced a serious flare which involved a weight gain of 9 pounds over 2 days. I am home again and resting.
The good news: the emergency physician looked up SCLS and looked at the protocol in this discussion group.
The bad news: she had no access to information regarding the treatment of a chronic flare where the systemic edema may damage tissue and organs, severe dehydration may occur, fluid management likely varies from acute SCLS crisis, etc.
Applying the protocol for a full blown SCLS crisis to a chronic patient can be not only unhelpful, but dangerous.
Although the term "protocol" has a more precise medical meaning, I use it to stimulate discussion and perhaps research into an algorithm for the management of this serious form of SCLS that can flare as well as trigger a classic SCLS crisis.
Thank you in advance,