The cliche of "rather be safe then sorry" is quite generalized, because sometimes even if you do all you can you are still far from safe, and still quite sorry. Sometimes in trying to be safe, you cause more harm. It isn't always clear if doing more is really better, or doing less is really worse.
So we are crossing our fingers. We are changing GI doctors and hoping that a "new set of eyes" will make the change worth it. We've thought our GI to be helpful. He's been pretty conservative about not doing too many tests, and still doing some when he felt appropriate. I liked that approach, except that when the problems just keep progressing into bigger problems, and we just keep doing the same things, it seems a little frustrating. So we'll see. This new GI comes highly recommended from other families who have mito kids, and even some who just have GI issues. Our pediatrician really likes him, too, as does our care manager (who is assigned the kids who have the most complicated cases).
There is one thing I'm a little nervous about. It's kind of a long story, which is sort of recapped here (or skip to the shot version* if you want):
When our youngest was in-patient, in a very frustrating and stressful hospitalization where we felt she was being kept there without medical need, but then we were being told if we took her home that it would be against medical advice -- and all sorts of threats were made in relation to that (let's just say things were tense between us and the hospital and medical providers there), one of the tests they felt needed to be done was a pH probe. This is a test we were familiar with because our older child had it done, and it did show a severe case of GERD. The only thing that data helped us with is that if we decided to do a surgery (nissen) that was then recommended, the test results supported the surgery. We decided NOT to do the surgery (and almost five years later do NOT regret that decision, though we were told by one doctor that it was medical neglect for us not to have the surgery done). Other treatment really stayed the same - prevacid for the acid, nebulizer with pulmicort for the resulting reactive airway disease, an oral steroid to reduce inflammation... nothing really changed. It was a 23hr long test and we just wanted to take our child home. When the GI doctor came in, we pleaded our case about why we felt that this test was NOT medically necessary, and why we did NOT need to stay in the hospital one more day just for this data when we were already treating her with prevacid. He conceded that we would not change the dosing of the medicine even if the results were like our older child, so he gave in to our requests to avoid the test. We were, well, pretty grumpy with him. He said something like, "Why are you being so belligerent!?" May not have been his exact words, but he was not understanding why we didn't want to do this test that "the team" felt would be a helpful test.
*Short Story: We pretty much had it out with a GI doc while our youngest was in-patient. We weren't as polite as we probably should have been when we met him, and our meeting was brief enough not to explain the background as to why we were worn-thin. I'm pretty sure that this GI doc is the same one we are going to see tomorrow. So I'm nervous about that unfortunate "first impression," making feel quite embarrassed, and hoping this doesn't taint whatever care our son is in need of.
Fingers crossed, right!?