I need info about CF

[christenk]

I do not know if this will be helpful for you, but my daughter is one and she has the same genetic mutations as your son (D508 and TG11-5T). It was a really rough first year for my husband and I to grasp what atypical CF meant. Our pulmonologist was very helpful at making a very "gray" situation, more "black and white". She says the second mutation, 5T, is relatively "Mild" and is associated with atypical CF. The spectrum of clinical presentations can vary greatly from person to person even with the same mutations.
In my daughter's case, she has had 2 abnormal chest xrays (increased perihilar thickening) and she does chest PT and Xopenex daily. She also gets the Synergis vaccine monthly, which has helped greatly. Other than that, she is does not have a cough or appear sick. She looks great and has a ravenous appetite!
Hope this helps a little!
Christen

 

[christenk]

I do not know if this will be helpful for you, but my daughter is one and she has the same genetic mutations as your son (D508 and TG11-5T). It was a really rough first year for my husband and I to grasp what atypical CF meant. Our pulmonologist was very helpful at making a very "gray" situation, more "black and white". She says the second mutation, 5T, is relatively "Mild" and is associated with atypical CF. The spectrum of clinical presentations can vary greatly from person to person even with the same mutations.
In my daughter's case, she has had 2 abnormal chest xrays (increased perihilar thickening) and she does chest PT and Xopenex daily. She also gets the Synergis vaccine monthly, which has helped greatly. Other than that, she is does not have a cough or appear sick. She looks great and has a ravenous appetite!
Hope this helps a little!
Christen

 

[christenk]

I do not know if this will be helpful for you, but my daughter is one and she has the same genetic mutations as your son (D508 and TG11-5T). It was a really rough first year for my husband and I to grasp what atypical CF meant. Our pulmonologist was very helpful at making a very "gray" situation, more "black and white". She says the second mutation, 5T, is relatively "Mild" and is associated with atypical CF. The spectrum of clinical presentations can vary greatly from person to person even with the same mutations.
In my daughter's case, she has had 2 abnormal chest xrays (increased perihilar thickening) and she does chest PT and Xopenex daily. She also gets the Synergis vaccine monthly, which has helped greatly. Other than that, she is does not have a cough or appear sick. She looks great and has a ravenous appetite!
Hope this helps a little!
Christen

 

[christenk]

I do not know if this will be helpful for you, but my daughter is one and she has the same genetic mutations as your son (D508 and TG11-5T). It was a really rough first year for my husband and I to grasp what atypical CF meant. Our pulmonologist was very helpful at making a very "gray" situation, more "black and white". She says the second mutation, 5T, is relatively "Mild" and is associated with atypical CF. The spectrum of clinical presentations can vary greatly from person to person even with the same mutations.
In my daughter's case, she has had 2 abnormal chest xrays (increased perihilar thickening) and she does chest PT and Xopenex daily. She also gets the Synergis vaccine monthly, which has helped greatly. Other than that, she is does not have a cough or appear sick. She looks great and has a ravenous appetite!
Hope this helps a little!
Christen

 

[christenk]

I do not know if this will be helpful for you, but my daughter is one and she has the same genetic mutations as your son (D508 and TG11-5T). It was a really rough first year for my husband and I to grasp what atypical CF meant. Our pulmonologist was very helpful at making a very "gray" situation, more "black and white". She says the second mutation, 5T, is relatively "Mild" and is associated with atypical CF. The spectrum of clinical presentations can vary greatly from person to person even with the same mutations.
In my daughter's case, she has had 2 abnormal chest xrays (increased perihilar thickening) and she does chest PT and Xopenex daily. She also gets the Synergis vaccine monthly, which has helped greatly. Other than that, she is does not have a cough or appear sick. She looks great and has a ravenous appetite!
Hope this helps a little!
Christen