Mylin’s Angry Pancreas

05/01/2026

Social service, psychology, G.I. Doctor, and nutritionist

One of the awkward things in all of this is that our doctor on SD used to work with a bunch of these people for years in Cincinnati and our experience with him is different than what they know. It makes some people testy, and other times it’s just awkward. The G.I. Doctor asked what our doctors take has been on Mylin’s situation. I told him our doctor has told us we just have to hope that the pancreas ceases to deteriorate (which it hasn’t in two years) and if doesn’t we treat that as it does. He also never told us about this surgery. We knew nothing about the TPIAT until I joined a Pediatric Pancreatitis support group. Then the GI doctor goes on to say how close he is with our doctor and has his cell phone number and can text him at any time. 😳. The wildest part is that for this surgery you do NOT want the pancreas to burn out, because you want to yield the most amount of healthy islets as possible. So we’re really confused about that whole situation.

Last we met with nutrition. The nutritionist did a lot of measurements of fat and muscle all over Mylin’s body. They also did several strength tests. If Mylin goes through with the surgery, they’ll also be testing after the surgery to try to ensure Mylin gets back to at least where they began Because Mylin is so nauseous and in so much pain, eating is a real issue. My lost 15lbs during a portion of 2025 and is now only 5 lbs more than their 10 year old check up. It was again driven home that we need to try to gain weight and muscle before the surgery. Especially because most people will lose after the surgery, so there needs to be extra to lose without being extremely unhealthy. This is probably the trickiest part of the whole situation for us. Mylin gets so sick. They can’t even look at food or be near it more than half of the week. The nutritionist is sending us home with an eating plan as well as some recommendation for very high calorie protein smoothies.

now we wait to hear back from them after they do the roundtable event