Lung disease in babies

[Lil]

Any one come across this?
My dd (6 months) has just been diagnosed, and we have some difficult decisions to make regarding treatment. I can't find much info on the subject. Have tried various websites but there's not enough real day-to-day experience of it in babies. Any knowledge at all (hearsay or otherwise) gratefully received.
thanks
Lil

[Lil]

Should just add that one of the treatments recommended is steroids (with a big S!). Awful side effects on such a little one. I know that premature babies are given some to help their lung function, has anyone's baby had to have this? Mine wasn't premature hence the cause unknown.

[MABS]

Lil - exactly what type of lung disease are they dianosing? My 2 yr old (premature)had steroids before and after birth.They saved his life basically.

My ds has lung disease, but there are so many different types. His looks to have been caused my a bad attack of Pneumonia at 16 wks. Has your child had bad chest infections? is there asthma in the family. Take care .

[tigermoth]

Lil, hope you get some useful replies here. I can't help, but I just wanted to say I'm sorry you're going through this.

[Lil]

MABS how did the doctors know what caused your sons disease? that's my problem, so far she's had various blood tests, x-rays and a cat scan which show areas of lung damage. To find out what caused it they have to do a lung biopsy, but the doctor said her symptons are not urgent enough to warrent it, as although she has breathing difficulties she is otherwise thriving. On the other hand he doesn't want to wait until she's completely breathless. Its a dilema which the doctor has put into our court, he will go with us either way, but is worried the side-effect of the steroids will make her sick. Meanwhile I have to watch her puffing all day and am getting pretty down about it.
MABS how did the steroids work? did your son have them for long? how is he now? what is your experience?
thanks

[MABS]

Hi Lil , no he didn't have steroids for long orally and he now has an inhaled steroid several times a day. For a long while there were suggestions that he might have cystic fibrosis but his test was negative. Have they used a nebuliser on dd at all ? it really used to help my little one breathe at times, though he hated it. Has dd had any chest infections since birth? Take care Mabs

[Lil]

MABS, thanks for the response. dd was also tested for CF quite a few times, until convinced it isn't. Will your son be on an inhaler for long? that's an option we haven't thought about. Are you worried about long term damage? or do they 'grow out of it'?