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Cheryl2424

New member
Hello,
I'm new to this forum, it's funny that I just found it... My daughter has CF she is now 13 and doing well. We're looking at starting her on the hyper saline in the next few months-have you seen this used yet? What did you think?
 
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Cheryl2424

New member
Hello,
I'm new to this forum, it's funny that I just found it... My daughter has CF she is now 13 and doing well. We're looking at starting her on the hyper saline in the next few months-have you seen this used yet? What did you think?
 
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JazzysMom

New member
Welcome to the site. I will be starting the saline hopefully on Thursday if it arrives on time. A few people have tried it so you should get some feed back. I hope you find lots of info, help or whatever you are looking for here!
 
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JazzysMom

New member
Welcome to the site. I will be starting the saline hopefully on Thursday if it arrives on time. A few people have tried it so you should get some feed back. I hope you find lots of info, help or whatever you are looking for here!
 
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Cheryl2424

New member
Did you have to try it out in the clinic? Danielle has to go there first to see how much it irritates her before they'll let her use it at home.
 
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Cheryl2424

New member
Did you have to try it out in the clinic? Danielle has to go there first to see how much it irritates her before they'll let her use it at home.
 
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Seana30

New member
<FONT color=#008000 size=3><STRONG>Cheryl,I also have a 13 year old daughter with CF.Where are you from?  When was your daughter diagnosed?Hope we can talk soon.Seanamom to Lauren-15, no CF    Courtney-13, with CF     Cameron-10, no CF</STRONG></FONT>
 
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Seana30

New member
<FONT color=#008000 size=3><STRONG>Cheryl,I also have a 13 year old daughter with CF.Where are you from?  When was your daughter diagnosed?Hope we can talk soon.Seanamom to Lauren-15, no CF    Courtney-13, with CF     Cameron-10, no CF</STRONG></FONT>
 
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Cheryl2424

New member
Seana,
We live in Dayton, Minnesota and our CF center is at Childrens Hospital in Minneapolis. Danielle was diagnosed Aug of 1992 at three months of age. She was a "failure to thrive" baby and it took 3 months and several different doctors to diagnose her.

I'm so excited about this website-It's nice to find a group of people who understand what we go through as a family and I'm hoping Danielle will log on soon to talk to other kids with CF. I think she sometimes feels alone with her feelings-I try to understand, but I'm not the one with the disease-I'm the one just making her do treatments she hates doing!
 
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Cheryl2424

New member
Seana,
We live in Dayton, Minnesota and our CF center is at Childrens Hospital in Minneapolis. Danielle was diagnosed Aug of 1992 at three months of age. She was a "failure to thrive" baby and it took 3 months and several different doctors to diagnose her.

I'm so excited about this website-It's nice to find a group of people who understand what we go through as a family and I'm hoping Danielle will log on soon to talk to other kids with CF. I think she sometimes feels alone with her feelings-I try to understand, but I'm not the one with the disease-I'm the one just making her do treatments she hates doing!
 
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anonymous

New member
DS was diagnosed at Children's in Mpls. Don't think Mary the dietician liked us too much. DS hated pregistimil and would spit it at us and then we tasted it -- tasted like a combination of vomit and the way road kill smells. Mary kept insisting DS didn't have developed tastebuds and didn't know the difference and in the next breath told us that DS didn't like the taste of adeks and we should mix it with some orange juice. Then she claimed DS was developmentally delayed and the reason he didn't eat was because of that. So she threw a fit when we demanded that DS be switched to regular formula -- Our doctor agreed, said to feed him what he wanted and she told us that our doctor didn't play well with others and we never saw her again for the rest of our two week stay. DS LOVED the new formula, started gaining weight and we've never looked back.
 
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anonymous

New member
DS was diagnosed at Children's in Mpls. Don't think Mary the dietician liked us too much. DS hated pregistimil and would spit it at us and then we tasted it -- tasted like a combination of vomit and the way road kill smells. Mary kept insisting DS didn't have developed tastebuds and didn't know the difference and in the next breath told us that DS didn't like the taste of adeks and we should mix it with some orange juice. Then she claimed DS was developmentally delayed and the reason he didn't eat was because of that. So she threw a fit when we demanded that DS be switched to regular formula -- Our doctor agreed, said to feed him what he wanted and she told us that our doctor didn't play well with others and we never saw her again for the rest of our two week stay. DS LOVED the new formula, started gaining weight and we've never looked back.
 
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skh

Guest
Welcome Cheryl!

I have a 14 yr. old daughter with CF. She was diagnosed at the age of 11. We live in Mandan ND so most of her CF visits are done here but once a year we go to the U of M and she sees Dr. Milla. I know what you mean about not being the one who has the disease and trying to understand. And I too seem to be always making her do treatments that she hates to do!

Sue

Mom to Beth-22, no CF Amanda-19, no CF Abby-14, with CF
 
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skh

Guest
Welcome Cheryl!

I have a 14 yr. old daughter with CF. She was diagnosed at the age of 11. We live in Mandan ND so most of her CF visits are done here but once a year we go to the U of M and she sees Dr. Milla. I know what you mean about not being the one who has the disease and trying to understand. And I too seem to be always making her do treatments that she hates to do!

Sue

Mom to Beth-22, no CF Amanda-19, no CF Abby-14, with CF
 
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Cheryl2424

New member
Dr. Milla came to Childrens and worked for awhile with Danielle's doctor-Dr. MacNamara. I liked Milla, he always remembers Danielle when we see him at certain events where the U and Childrens combine. Did you go to the CF Convention this year? We missed it because Danielle was in the middle of a basketball tournament......
 
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Cheryl2424

New member
Dr. Milla came to Childrens and worked for awhile with Danielle's doctor-Dr. MacNamara. I liked Milla, he always remembers Danielle when we see him at certain events where the U and Childrens combine. Did you go to the CF Convention this year? We missed it because Danielle was in the middle of a basketball tournament......
 
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