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Betty, thank you so much for your comments. I don't know you, but I feel as if I do. I am so sorry for what you and your daughters have gone through. We do have specialists in pediatric gastroenterology now. Although you and your daughters may still have had to spend some time in big city children's hospitals, now we have great ways to manage children with special needs in collaboration with their other specialists in other cities.
Unfortunately, what you report as a problem in your daughter's current care may not be solely related to providers not being knowledgeable about her specific condition. It is that they are not listening to her. No matter how common or rare a disease or condition, every patient responds in a unique way. When you have a chronic or life-long condition, the patient learns what works best and what doesn't in their own situation. Even patients with the common types of pancreatitis can have trouble in the early phases of an "attack" with oral drugs, and also with morphine. The specifics are not important, because, in fact every patient is different.
What is important is something else that I have emphasized in this blog from time to time, and that is the provision of "patient and family centered care" which makes the patient and their chosen family members key members of the health care team. It is what we teach to our students and residents. It is the other way we intend to make sure healthcare for kids in this area is the best it can be. By recruiting and training pediatric residents to offer that kind of care, over time as many will remain in our area, this will get better, I promise.
Best of luck to you and your daughters.

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