Hi Lisa,
My 18 yo daughter was recently preliminarily diagnosed with MALS after several years of testing and pain. She also has a congenital anomaly of the anatomy of her duodenum. She has always been slender, but a couple of years ago began to have issues with vomiting, significant pain, and has lost a significant amount of weight. She is 5'7" and hovers between 85-90 pounds. She is in pain all the time, and her doctor has said she will need to have an NJ tube if she loses more weight. She is headed away to college in a few weeks, so I am even more concerned since I won't be with her.
We have been seeing doctors at Johns Hopkins All Children's Hospital in Florida, but I am thinking we need to go to a team with significant experience in MALS. Do you have any insight you could share? Thank you in advance!!