My 30 y.o. child is newly diagnosed with ISCLS and has had 2 flares. An severe in-patient weeklong stay in the hospital included no one who knew of SCLS or would use that lens to interpret the symptomology. Our AZ neurologist, Dr. Yazan Al-Hassan, diagnosed. How do you navigate the appeal process of insurance denials (one month in with Cigna) and how do you recommend advocacy should an in-patient stay occur? Any recommendations specific to hospital facilities or preferred systems welcome. As a nurse practitioner, I know systems; but as a parent, I feel powerless. 

Kindly,

Joanna

Joanna,

Welcome to our community!  You are in good hands now. 

Please take a look at the many relevant past discussions, such as https://rareshare.org/topics/2268 and https://rareshare.org/topics/2222

Write to me at my personal address, aporzeca@american.edu, and I'll send you a "CARE" package for you to share with Dr. Al-Hasan (one "s").

Arturo