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So sorry you are going through all of this. I can certainly relate to your situation. I would keep pushing and not worry about what the doctors think of you for it. I always think that they must dread seeing or hearing from me because I am constantly pushing and asking questions. I just don't...

So sorry you are going through all of this. I can certainly relate to your situation. I would keep pushing and not worry about what the doctors think of you for it. I always think that they must dread seeing or hearing from me because I am constantly pushing and asking questions. I just don't...

Hi Dana, States that participate in NBS test the IRT level in the newborn's blood. In New Jersey, for example, if IRT is above a certain level they test for delta f508 and that is the only mutation tested. If the IRT is between 90 and 130 and no f508 the screen is negative and parent's are not...

Hi Dana, States that participate in NBS test the IRT level in the newborn's blood. In New Jersey, for example, if IRT is above a certain level they test for delta f508 and that is the only mutation tested. If the IRT is between 90 and 130 and no f508 the screen is negative and parent's are not...

Hi Dana, <br />States that participate in NBS test the IRT level in the newborn's blood. In New Jersey, for example, if IRT is above a certain level they test for delta f508 and that is the only mutation tested. If the IRT is between 90 and 130 and no f508 the screen is negative and parent's are...

Thanks so much for your response! I felt so much better after typing all that out! My guy is 4 and a half. He always tasted salty to me but I have never seen anything like that before in my life!! I have read a lot of your posts on here and on healthboards. You are always so helpful. I am going...

Thanks so much for your response! I felt so much better after typing all that out! My guy is 4 and a half. He always tasted salty to me but I have never seen anything like that before in my life!! I have read a lot of your posts on here and on healthboards. You are always so helpful. I am going...

Thanks so much for your response! I felt so much better after typing all that out! My guy is 4 and a half. He always tasted salty to me but I have never seen anything like that before in my life!! I have read a lot of your posts on here and on healthboards. You are always so helpful. I am going...

Today I picked my son up from daycare. It was super hot today and I saw this white stuff all on the back of his neck, on his hairline, and on his scalp!! It freaked me out so much that I cried when I got home with him. I just don't understand. My son has had a borderline sweat test (at a...

Today I picked my son up from daycare. It was super hot today and I saw this white stuff all on the back of his neck, on his hairline, and on his scalp!! It freaked me out so much that I cried when I got home with him. I just don't understand. My son has had a borderline sweat test (at a...

Today I picked my son up from daycare. It was super hot today and I saw this white stuff all on the back of his neck, on his hairline, and on his scalp!! It freaked me out so much that I cried when I got home with him. I just don't understand. My son has had a borderline sweat test (at a...

My son is also on Ultrase. Our doctor has been supplying us with samples to get us by. I am not too sure how long that will last us! The nurse told me she expects Ultrase to get FDA approval soon, but there might be a name change. For example, my son takes Ultrase MT 20 and it may change to...

My son is also on Ultrase. Our doctor has been supplying us with samples to get us by. I am not too sure how long that will last us! The nurse told me she expects Ultrase to get FDA approval soon, but there might be a name change. For example, my son takes Ultrase MT 20 and it may change to...

My son is also on Ultrase. Our doctor has been supplying us with samples to get us by. I am not too sure how long that will last us! The nurse told me she expects Ultrase to get FDA approval soon, but there might be a name change. For example, my son takes Ultrase MT 20 and it may change to...

yeah, ours takes that long too. We use the Pari machine and neb too.

I am so sorry you are going through all of this! Your situation is very similar to mine. My son is 4 and has pancreatic insufficiency and a borderline sweat test. He has a lot of lung involvement as well. It has been such a horrible battle for us and I hate to hear of others going through it as...

I am so sorry you are going through all of this! Your situation is very similar to mine. My son is 4 and has pancreatic insufficiency and a borderline sweat test. He has a lot of lung involvement as well. It has been such a horrible battle for us and I hate to hear of others going through it as...

I am so sorry you are going through all of this! Your situation is very similar to mine. My son is 4 and has pancreatic insufficiency and a borderline sweat test. He has a lot of lung involvement as well. It has been such a horrible battle for us and I hate to hear of others going through it as...

We have been looking back into our family history as well. My husband's side had a lot of cancers, but nothing with CF. There isn't even anyone with asthma! My side on the other hand there is tons of stuff. We have had lots of Crohn's disease, infant deaths, congenital heart disease, cancer and...

We have been looking back into our family history as well. My husband's side had a lot of cancers, but nothing with CF. There isn't even anyone with asthma! My side on the other hand there is tons of stuff. We have had lots of Crohn's disease, infant deaths, congenital heart disease, cancer and...