mommy2diego
New member
my name is Andrea and my son Diego was diagnosed through newborn screening. He has mutattions DELf508 and d1152h. anybody have or have kids with these?
He's 4 months old...so far, pancreatic sufficient, but has respitory issues...wheezing and crackling....thought he had rsv but that came neg. not culturing any pseudo, but treated for 2 weeks on antibiotics for other positive cultures. i'm blessed that he's growing and gaining weight. he's on albuterol and hypertonic saline for now.
couple of questions:
1. has anyone had a child that was pancreatic sufficient in infancy and later lost it?
2.anyone had a bronchiscopy done? think that's what its called. they want to put a camera down to his lungs and check them out....if yes, how young. they are talking about scheduling this already.
3. also, how old when you transition to a vest?
thanks, and i hope to learn a lot from this board, as this is all brand new to me.
He's 4 months old...so far, pancreatic sufficient, but has respitory issues...wheezing and crackling....thought he had rsv but that came neg. not culturing any pseudo, but treated for 2 weeks on antibiotics for other positive cultures. i'm blessed that he's growing and gaining weight. he's on albuterol and hypertonic saline for now.
couple of questions:
1. has anyone had a child that was pancreatic sufficient in infancy and later lost it?
2.anyone had a bronchiscopy done? think that's what its called. they want to put a camera down to his lungs and check them out....if yes, how young. they are talking about scheduling this already.
3. also, how old when you transition to a vest?
thanks, and i hope to learn a lot from this board, as this is all brand new to me.