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One thing in this horrible story that will be familiar to anyone worth lifelong illness is the divide between pediatric and adult care. At age 18, you will experience an immediate shift in professional knowledge, care paradigm, access and support, either for better or worse, and it's just ridiculous because the condition is the same. This just shows how much more important the system as a whole is compared to the intelligence, curiosity, or work ethic of any individual doctor. We were advised with my daughter (different illness) to keep pediatric specialists as long as possible and many of them regularly made these exceptions for patients for this reason.