Justin Delgado is husband to Kacie Doyle-Delgado, diagnosed at age 11. After more than a decade together, he considers himself to be an expert carb counter and Dexcom inserter. He graduated with his Master of Science in Finance from the University of Utah in 2013 and has been working in commercial banking since then. He attended his first Friends for Life conference in 2015 and is looking forward to volunteering with the teens.
August 16, 2002
Question from Dallas, Texas, USA:
My son has nesidioblastosis, and while he's already had a near-total pancreatectomy. Nonetheless, he continues to have low blood sugars. He's on diazoxide (which hasn't been as effective as hoped). Recently, the doctors added hydrocortisone, with which they have finally been able to remove him from the IV solution. The doctors are talking about discharging my son on continued hydrocortisone and diazoxide medications. We know the side-effects of the diazoxide, however, we are concerned about the long-term effects of the steroids. What are the long-term effects of steroid use? Does this course of action sound reasonable?
It is impossible to answer such questions without seeing your child in consultation. It sounds like you should be working with pediatric endocrinologists knowledgeable in the treatment of nesidioblastosis. Sometimes one needs to do a complete pancreatectomy when partial pancreatectomy does not work. The questions you ask are excellent ones but it sounds like you do not have much choice if the hypoglycemia and hyperinsulinism persists.