This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!
Hi everyone. My daughter just had a CT sacn which showed moderate to severe bronchiectasis in the right middle lobe and lingula. Just curious what other parents of young kids have found out from their own kids CT scans. Thanks!
Hi everyone. My daughter just had a CT sacn which showed moderate to severe bronchiectasis in the right middle lobe and lingula. Just curious what other parents of young kids have found out from their own kids CT scans. Thanks!
My son hasn't had a CT scan yet. Just curious what your daughter's xray was like. My son's shows no changes. I don't think his doctor would recommend us to CT scan unless we were having more problems. He hasn't cultured PA and is unusual because he passes the sweat test.
So what do they plan to do with regards to her care differently with these CT scan findings? Is she on Pulmozyme and Hypertonic saline yet? I would push for the most agressive care you can get. Especially since a life changing medication is on the horizon for her with DF508. Push to keep her disease from advancing until she gets 890 or 661!
My son hasn't had a CT scan yet. Just curious what your daughter's xray was like. My son's shows no changes. I don't think his doctor would recommend us to CT scan unless we were having more problems. He hasn't cultured PA and is unusual because he passes the sweat test.
So what do they plan to do with regards to her care differently with these CT scan findings? Is she on Pulmozyme and Hypertonic saline yet? I would push for the most agressive care you can get. Especially since a life changing medication is on the horizon for her with DF508. Push to keep her disease from advancing until she gets 890 or 661!
Since you mentioned 809 or 661, I am going to stir the pot a little and say that there are at least two people with Delta 508 and 621+1g>t who have benefited from Kalydeco alone.
Since you mentioned 809 or 661, I am going to stir the pot a little and say that there are at least two people with Delta 508 and 621+1g>t who have benefited from Kalydeco alone.
Thanks for your replies. Xrays always show chronic lung markings in right middle lobe. This has always been her "trouble spot". She is on Pulmozyme. Not on hyp. sal. We go to childrens hospital los angeles and they dont prescribe hyp. sal until age 6. Her FEV is 102. We meet with her dr. tomorrow to see what we can do to prevent any further damage.
This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
By continuing to use this site, you are consenting to our use of cookies.