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Cystic Fibrosis Message Board


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Cf clinic Q's
Jul 26, 2005
We recently moved to a new state and are going to a new CF clinic. At our old clinic our son saw Pulmo, GI, Resp, dietician, nurse, and social work. At our new clinic he only sees pulmo and dietician, neither of which seem very helpful. Our son has a wheat allergy which is making things very difficult as far as his diet and the dietician is absolutely no help. He has aways taken the liquid multi vitamin designed for CF kids. Today they told me they wanted me to get him centrum jr chewables. Any other kids on these? It was my understanding that kids need a water soluble forumla because they can't absorb anything else. Any thoughts on this? They also gave me a rx for extra vit E, but they did not do any labs, none have been done for about 1 yr, to find out his vit levels. Does this seem odd? The pulmo dr is basically the resp therapist but he had no idea what kind or nebulizer I needed or anything about the fact that I was told I need to wash, sanitize(boil) all nebulizer parts. My son is only 14 mo old so we've only been doing this for a year. Am I just stuck on how things were taught to us at our old clinic? Another thing that was different was about when he would get a vest. Our old resp. therapist said about 2 yrs, depending on weight. She thought is much more effective than manaul percussion. This dr is saying around 7, and he doesn't think it is that wonderful. Do I have reason to be concerned? I am really considering changing clinics. Any thoughts would be appreciated!





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