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HI,this is just the group I have been searching for. My 13 yr old

daughter was diagnosed with CF last yr at this time. It has been a

rollercoaster of emotions ever sense, but we try to stay positive

for her. She is doing very well at the time, but was put in the

hospital in March with pneumonia in both lungs. Was in there for a

week, then home health came in and showed me how to do her meds

myself. As of right now we are treating her for asperillas(probably

ms, sorry) she is taking Sporanox and Prednisone, and doing well on

that. She also has to take Ultrase MT 18 with meals and snacks,

which I think is helping because she has gained 5 pounds and looking

very good. I try to get a Scandi shake down her every other night,

and she doesn't seem to mind the taste, as long as its with ice

cream,LOL.

It will be nice talking to other people that can relate, you know my

friends and family have been a great support but don't really know

the real affects this disease has on a child, or there parents.

Margo

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