Just found out daughter has Mycobacterium Abscessus

We just found out my daughter 11 has mycobacterium Abscesses (not MAC which she has also cultured in past but now apparently clear) and will start the treatment process soon. right now they r recommending IV Amikacin, IV imipenem, and azithromycin for at least 5 weeks (up to 3months) until cultures clear. Her pfts are still in the 80s/ low 90s, but it's still a drop from her baseline of over 100 last year. Do you have any advice as we start this journey? We are thinking of doing a port instead of PICC due to the potential length of time. I am starting my research on treatments and these medicines.... Seems like they want to attack this pretty hard upfront, which seems like the right approach. We will do baseline testing in next few days for ct scan, ekg, hearing, blood and do weekly monitoring, especially of hearing due to amikacin. Our cf team will coordinate with dr Oliver at nih. thanks...(PRAYING)
Source: Cystic Fibrosis Families Forum - Category: Respiratory Medicine Authors: Tags: Families Source Type: forums