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Are they re-doing the sweat tests because they fell close to borderline? Are the sweat tests being done at an accredited center and do you feel that the docs are listening to your concerns? Does your son have any GI symptoms? Just thoughts that come to my mind. It sounds like the providers...

That was really nice and your family is absolutely beautiful. It was very touching to see him sleeping through treatments - we had some pics of our daughter sleeping, too - it is all just part of the reality. Great job! Thanks for sharing and good luck with raising funds and awareness!

That was really nice and your family is absolutely beautiful. It was very touching to see him sleeping through treatments - we had some pics of our daughter sleeping, too - it is all just part of the reality. Great job! Thanks for sharing and good luck with raising funds and awareness!

That was really nice and your family is absolutely beautiful. It was very touching to see him sleeping through treatments - we had some pics of our daughter sleeping, too - it is all just part of the reality. Great job! Thanks for sharing and good luck with raising funds and awareness!

Being stressed, feeling helpless, wondering how in the world are you going to cope - these are all normal and I'm sorry I don't have any answers for you but time will help, I promise. Now for the reality of getting through the next 6 months or so: first of all, if you do get a CF diagnosis this...

Being stressed, feeling helpless, wondering how in the world are you going to cope - these are all normal and I'm sorry I don't have any answers for you but time will help, I promise. Now for the reality of getting through the next 6 months or so: first of all, if you do get a CF diagnosis this...

Being stressed, feeling helpless, wondering how in the world are you going to cope - these are all normal and I'm sorry I don't have any answers for you but time will help, I promise. Now for the reality of getting through the next 6 months or so: first of all, if you do get a CF diagnosis this...

Poor muscle tone was one thing that was observed in my daughter in the first few months of her life (she was dx as failure to thrive at the time). She was not dx with CF until age 3 years 3 months. Also, when her GI symptoms were getting worse and we were working for some kind of dx, I...

Poor muscle tone was one thing that was observed in my daughter in the first few months of her life (she was dx as failure to thrive at the time). She was not dx with CF until age 3 years 3 months. Also, when her GI symptoms were getting worse and we were working for some kind of dx, I...

Poor muscle tone was one thing that was observed in my daughter in the first few months of her life (she was dx as failure to thrive at the time). She was not dx with CF until age 3 years 3 months. Also, when her GI symptoms were getting worse and we were working for some kind of dx, I...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bmombtoo</b></i> I feel like a unloyal friend to you guys because I haven't been checking in and posting. Now that I need some support to end this worry I'm turning to you.</end quote></div> Well I don't think anyone is keeping...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bmombtoo</b></i> I feel like a unloyal friend to you guys because I haven't been checking in and posting. Now that I need some support to end this worry I'm turning to you.</end quote></div> Well I don't think anyone is keeping...

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bmombtoo</b></i> I feel like a unloyal friend to you guys because I haven't been checking in and posting. Now that I need some support to end this worry I'm turning to you.</end quote></div> Well I don't think anyone is keeping...

To answer your original question: If this was my kiddo, and I knew what I know now, I would seek a second opinion and drive 2 hours to another CF center. The fact that the full Ambry panel showed only 1 mutation does seem to make one question. But I think a second sweat test is warranted...

To answer your original question: If this was my kiddo, and I knew what I know now, I would seek a second opinion and drive 2 hours to another CF center. The fact that the full Ambry panel showed only 1 mutation does seem to make one question. But I think a second sweat test is warranted...

To answer your original question: If this was my kiddo, and I knew what I know now, I would seek a second opinion and drive 2 hours to another CF center. The fact that the full Ambry panel showed only 1 mutation does seem to make one question. But I think a second sweat test is warranted...

Our dd's first sweat tests were 68 and 103 (pats self on back that I actually had to LOOK UP those exact vaules in my notes; I guess I've come a long way!) She was 3 at the time, so the quantity of sweat was not an issue. They were taken one right after the other, but on different arms. I...

Our dd's first sweat tests were 68 and 103 (pats self on back that I actually had to LOOK UP those exact vaules in my notes; I guess I've come a long way!) She was 3 at the time, so the quantity of sweat was not an issue. They were taken one right after the other, but on different arms. I...

Our dd's first sweat tests were 68 and 103 (pats self on back that I actually had to LOOK UP those exact vaules in my notes; I guess I've come a long way!) She was 3 at the time, so the quantity of sweat was not an issue. They were taken one right after the other, but on different arms. I...

I understand how you are feeling. After 7 months of panic and grief since my dd's diagnosis, I've started to feel some stoic calmness just on the edges, trying to assert itself over my uncontrolled emotions. I attended the funeral for a co-worker's son (age 26, Down Syndrome) and handled the...