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As a mom to a recently diagnosed daughter (coming up on her 1 year dx), I agree with the above statements of getting the kids retested via sweat tests and genetic tests. If the clinic only tested for 58 or so mutations, there is a great chance they are missing the mutations your children may...

As a mom to a recently diagnosed daughter (coming up on her 1 year dx), I agree with the above statements of getting the kids retested via sweat tests and genetic tests. If the clinic only tested for 58 or so mutations, there is a great chance they are missing the mutations your children may...

As a mom to a recently diagnosed daughter (coming up on her 1 year dx), I agree with the above statements of getting the kids retested via sweat tests and genetic tests. If the clinic only tested for 58 or so mutations, there is a great chance they are missing the mutations your children may...

<P>I was wandering if someone could explain the whole 5T/7T/9T when genetics are tested. Do we all have these? Does only people who have CF have these different variants? I am just slightly confused on this topic. Any information would be greatly appreciated. </P>

<P>I was wandering if someone could explain the whole 5T/7T/9T when genetics are tested. Do we all have these? Does only people who have CF have these different variants? I am just slightly confused on this topic. Any information would be greatly appreciated. </P>

<P>I was wandering if someone could explain the whole 5T/7T/9T when genetics are tested. Do we all have these? Does only people who have CF have these different variants? I am just slightly confused on this topic. Any information would be greatly appreciated. </P>

When you say rare, is that because the mutation was not found in the genetic testing? I believe your son should receive all the treatment he deserves. If you don't like what they decide should happen, do what ymikhal did and make them go pale.

When you say rare, is that because the mutation was not found in the genetic testing? I believe your son should receive all the treatment he deserves. If you don't like what they decide should happen, do what ymikhal did and make them go pale.

When you say rare, is that because the mutation was not found in the genetic testing? I believe your son should receive all the treatment he deserves. If you don't like what they decide should happen, do what ymikhal did and make them go pale.

When you say rare, is that because the mutation was not found in the genetic testing? I believe your son should receive all the treatment he deserves. If you don't like what they decide should happen, do what ymikhal did and make them go pale. Mine was labeled that too and has grown a slew of...

When you say rare, is that because the mutation was not found in the genetic testing? I believe your son should receive all the treatment he deserves. If you don't like what they decide should happen, do what ymikhal did and make them go pale. Mine was labeled that too and has grown a slew of...

When you say rare, is that because the mutation was not found in the genetic testing? I believe your son should receive all the treatment he deserves. If you don't like what they decide should happen, do what ymikhal did and make them go pale. Mine was labeled that too and has grown a slew of...

Thank you so much, Tom!!!! I am so sorry I have not been back recently. We ended up staying a month in the hospital. It has been a very long and bumpy road for our baby girl. She is currently being fed by an ND tube (nothing is allowed in her belly) due to a Gtube injury while in the...

Thank you so much, Tom!!!! I am so sorry I have not been back recently. We ended up staying a month in the hospital. It has been a very long and bumpy road for our baby girl. She is currently being fed by an ND tube (nothing is allowed in her belly) due to a Gtube injury while in the...

Thank you so much, Tom!!!! <br /> <br />I am so sorry I have not been back recently. We ended up staying a month in the hospital. It has been a very long and bumpy road for our baby girl. She is currently being fed by an ND tube (nothing is allowed in her belly) due to a Gtube injury while in...

It is tough. I agree. My one year old just had one placed. She was hospitalized for three weeks for CF exasurbation and then gtube placement. After surgery she was in so much pain she was on morphine for 8 days. I felt helpless. I know most people don't react this way to gtube placement...

It is tough. I agree. My one year old just had one placed. She was hospitalized for three weeks for CF exasurbation and then gtube placement. After surgery she was in so much pain she was on morphine for 8 days. I felt helpless. I know most people don't react this way to gtube placement...

It is tough. I agree. My one year old just had one placed. She was hospitalized for three weeks for CF exasurbation and then gtube placement. After surgery she was in so much pain she was on morphine for 8 days. I felt helpless. I know most people don't react this way to gtube placement...

Thank you so much, Megan. I appreciate your story. We are still in the hospital. She had the gtube surgery and it has caused her so much pain. All she does is scream and cry. Feeling very helpless. They have started her on morphine yesterday. Today switched to Oxy with morphine as a...

Thank you so much, Megan. I appreciate your story. We are still in the hospital. She had the gtube surgery and it has caused her so much pain. All she does is scream and cry. Feeling very helpless. They have started her on morphine yesterday. Today switched to Oxy with morphine as a...