My mycobacteria was discovered after a hospital stay 5 years ago. They couldn't tell me when I got it because you have to do a special sputum culuture to discover it (I used to only get routine cultures).
Anyhoo, I was told that while it is hard to treat/get rid of, it could be kept 'sleeping' with nebbed Amikacin, so I've been doing that for 5 years along with my general oral anitbotic (zithromax).
I haven't gotten sick again since 2001 (beside the random cold or congestion), and I haven't noticed much change in my health or routine. I do find I get tired easier at the end of the day - but that could just be my age sneaking up on me <img src="i/expressions/face-icon-small-smile.gif" border="0">
I do cough more because my throat gets irritated from the Amikacin - its a feeling you get used to, but when I was off of it for a couple of weeks (insurance issues) and my throat went back to normal, it was the most amazing feeling! I could take bigger clearer breathes without feeling any restriction - almost nice enough to want to skip treatments, but too afraid of the bacteria eating away at my lungs.
It is a nasty bug - I'm sorry to hear your daughter caught it so young. I guess the good part (hopefully) is that your daughter is young enough to not be overly drug-resistent yet. Theres very little I can take now outside of IVs to treat any future infections.
I wish your family the best - I know it must worry you a lot.
--Wallflower, 34 w/cf