Recent content by mom2owen

Thank you so much for the reply. I'm really sorry it has been so hard for you. It's so typical for teens not to be compliant but its just not fair that it is so much harder for you with CF and the impact it had. I will be wishing you all the best. I think your advice is good, and I would rather...

Yay! It's that time!! Owen hasn't had a tube feeding in quite a while and his GI had said we can take it out. Woohoo! I am wondering if any one can share any tips. He doesn't want it out (he's always hated changing it) and thinks it will hurt. He also says he worries if he will need one again...

Oh Jen, I am so sorry to hear this. How are you doing? And your daughter? How agonizing. I am truly sorry to hear your news. Knowing your story from when I was on here before, I have thought of you and have wished you the best. I will keep you in my thoughts and hope that you both get the care...

rtorres25, this happened in the US. We have a couple of close friends in Europe and in South America who said this would never happen there. We have certain child protection laws here and unfortunately, the interpretation and the response may not fit with the situation each and every time, which...

Hi! It has been forever since I got so much support from this forum for my son. So much has happened since then I have a sense of positive obligation to bring awareness to an issue that happened with us. Let me first start off by saying that my son is doing well. He is off his tube. He lost...

Hi and welcome, I am sad you are here though <img src="i/expressions/face-icon-small-sad.gif" border="0"> It is scary to have someone suggest the testing for CF. I remember the first time we were told to check for it and I was very confused and scared. One thing that helped me was to know that...

Hi and welcome, I am sad you are here though <img src="i/expressions/face-icon-small-sad.gif" border="0"> It is scary to have someone suggest the testing for CF. I remember the first time we were told to check for it and I was very confused and scared. One thing that helped me was to know that...

Hi and welcome, I am sad you are here though <img src="i/expressions/face-icon-small-sad.gif" border="0"> It is scary to have someone suggest the testing for CF. I remember the first time we were told to check for it and I was very confused and scared. One thing that helped me was to know that...

Hi, Thanks for the post. I have wondered but wouldn't that have shown in the CT? It would make perfect sense. Do they also cause bloody noses or could those just be from all the inflammation? His nose doesn't always run, it is usually just really stuffed up with yellow stuff. Eww. It is running...

Hi, Thanks for the post. I have wondered but wouldn't that have shown in the CT? It would make perfect sense. Do they also cause bloody noses or could those just be from all the inflammation? His nose doesn't always run, it is usually just really stuffed up with yellow stuff. Eww. It is running...

Hi, Thanks for the post. I have wondered but wouldn't that have shown in the CT? It would make perfect sense. Do they also cause bloody noses or could those just be from all the inflammation? His nose doesn't always run, it is usually just really stuffed up with yellow stuff. Eww. It is running...

I just looked it up, Ambry does the PCD 61 test (they do tons of other genetic testing too besides CF). Do they already have blood from you daughter? Maybe they can use that and do the test quickly. I would look at their website www.ambrygen.com and give them a call. When I have spoken with a...

I just looked it up, Ambry does the PCD 61 test (they do tons of other genetic testing too besides CF). Do they already have blood from you daughter? Maybe they can use that and do the test quickly. I would look at their website www.ambrygen.com and give them a call. When I have spoken with a...

I just looked it up, Ambry does the PCD 61 test (they do tons of other genetic testing too besides CF). Do they already have blood from you daughter? Maybe they can use that and do the test quickly. I would look at their website www.ambrygen.com and give them a call. When I have spoken with a...

Wow. I am a little shocked by this news. I am also curious about how they explained the results. We were told that PCD would mostly be more extreme in presentation but not as serious in prognosis. Does the idea of PCD feel right to you? What a roller coaster ride this can be. I am happy for the...