Newly Diagnosed (2 month old son)

[mom2my3kids]

Hi everyone,

Where to begin...my son Xander is 9 weeks old. His IRT level flagged at his newborn screen with a 151. We went for his sweat testing and he scored a 30 which is considered borderline so we proceeded to bloodwork which then showed Delta F508 in addition to a T5 variant. My husband and I have to go to our nearest CF center (2 hours from home) on December 1st. To be quite honest I do not know what to think! He shows only a constant sinus problem (like drainage) since birth but is gaining weight and no other symptoms. There is also no one in the family (that we know of) that has this at all...what will happen next or what should be proactive about asking to be done? Thanks for the advice <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mom2my3kids]

Hi everyone,

Where to begin...my son Xander is 9 weeks old. His IRT level flagged at his newborn screen with a 151. We went for his sweat testing and he scored a 30 which is considered borderline so we proceeded to bloodwork which then showed Delta F508 in addition to a T5 variant. My husband and I have to go to our nearest CF center (2 hours from home) on December 1st. To be quite honest I do not know what to think! He shows only a constant sinus problem (like drainage) since birth but is gaining weight and no other symptoms. There is also no one in the family (that we know of) that has this at all...what will happen next or what should be proactive about asking to be done? Thanks for the advice <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mom2my3kids]

Hi everyone,

Where to begin...my son Xander is 9 weeks old. His IRT level flagged at his newborn screen with a 151. We went for his sweat testing and he scored a 30 which is considered borderline so we proceeded to bloodwork which then showed Delta F508 in addition to a T5 variant. My husband and I have to go to our nearest CF center (2 hours from home) on December 1st. To be quite honest I do not know what to think! He shows only a constant sinus problem (like drainage) since birth but is gaining weight and no other symptoms. There is also no one in the family (that we know of) that has this at all...what will happen next or what should be proactive about asking to be done? Thanks for the advice <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mom2my3kids]

Hi everyone,

Where to begin...my son Xander is 9 weeks old. His IRT level flagged at his newborn screen with a 151. We went for his sweat testing and he scored a 30 which is considered borderline so we proceeded to bloodwork which then showed Delta F508 in addition to a T5 variant. My husband and I have to go to our nearest CF center (2 hours from home) on December 1st. To be quite honest I do not know what to think! He shows only a constant sinus problem (like drainage) since birth but is gaining weight and no other symptoms. There is also no one in the family (that we know of) that has this at all...what will happen next or what should be proactive about asking to be done? Thanks for the advice <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mom2my3kids]

Hi everyone,
<br />
<br />Where to begin...my son Xander is 9 weeks old. His IRT level flagged at his newborn screen with a 151. We went for his sweat testing and he scored a 30 which is considered borderline so we proceeded to bloodwork which then showed Delta F508 in addition to a T5 variant. My husband and I have to go to our nearest CF center (2 hours from home) on December 1st. To be quite honest I do not know what to think! He shows only a constant sinus problem (like drainage) since birth but is gaining weight and no other symptoms. There is also no one in the family (that we know of) that has this at all...what will happen next or what should be proactive about asking to be done? Thanks for the advice <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[just1more]

Jana, first of all while I hate to see a new member, welcome.

You will find this site to be greatly helpful and the people here wonderful.

As for the 1st visit, I would sit down and start coming up with questions and writing them down. When you go you are going to be overwhelmed, the best way to approach is to take a list and write down everything.

Then in the days afterwards you can look back over your notes and put together the pieces.

The best I can suggest is start thinking of anything you want to know and post. Someone will answer and no question is too small or weird, someone has asked it before.

 

[just1more]

Jana, first of all while I hate to see a new member, welcome.

You will find this site to be greatly helpful and the people here wonderful.

As for the 1st visit, I would sit down and start coming up with questions and writing them down. When you go you are going to be overwhelmed, the best way to approach is to take a list and write down everything.

Then in the days afterwards you can look back over your notes and put together the pieces.

The best I can suggest is start thinking of anything you want to know and post. Someone will answer and no question is too small or weird, someone has asked it before.

 

[just1more]

Jana, first of all while I hate to see a new member, welcome.

You will find this site to be greatly helpful and the people here wonderful.

As for the 1st visit, I would sit down and start coming up with questions and writing them down. When you go you are going to be overwhelmed, the best way to approach is to take a list and write down everything.

Then in the days afterwards you can look back over your notes and put together the pieces.

The best I can suggest is start thinking of anything you want to know and post. Someone will answer and no question is too small or weird, someone has asked it before.

 

[just1more]

Jana, first of all while I hate to see a new member, welcome.

You will find this site to be greatly helpful and the people here wonderful.

As for the 1st visit, I would sit down and start coming up with questions and writing them down. When you go you are going to be overwhelmed, the best way to approach is to take a list and write down everything.

Then in the days afterwards you can look back over your notes and put together the pieces.

The best I can suggest is start thinking of anything you want to know and post. Someone will answer and no question is too small or weird, someone has asked it before.

 

[just1more]

Jana, first of all while I hate to see a new member, welcome.
<br />
<br />You will find this site to be greatly helpful and the people here wonderful.
<br />
<br />As for the 1st visit, I would sit down and start coming up with questions and writing them down. When you go you are going to be overwhelmed, the best way to approach is to take a list and write down everything.
<br />
<br />Then in the days afterwards you can look back over your notes and put together the pieces.
<br />
<br />The best I can suggest is start thinking of anything you want to know and post. Someone will answer and no question is too small or weird, someone has asked it before.

 

[smilezncries1995]

i truely do sympathize for you my son was diagnosed with cf as a newborn. and we have no know history of it in our family. it can be over whelming at times. my son is now 13 and is one of the healthiest cf kids that i know of. the key is ask lots of questions.

 

[smilezncries1995]

i truely do sympathize for you my son was diagnosed with cf as a newborn. and we have no know history of it in our family. it can be over whelming at times. my son is now 13 and is one of the healthiest cf kids that i know of. the key is ask lots of questions.

 

[smilezncries1995]

i truely do sympathize for you my son was diagnosed with cf as a newborn. and we have no know history of it in our family. it can be over whelming at times. my son is now 13 and is one of the healthiest cf kids that i know of. the key is ask lots of questions.

 

[smilezncries1995]

i truely do sympathize for you my son was diagnosed with cf as a newborn. and we have no know history of it in our family. it can be over whelming at times. my son is now 13 and is one of the healthiest cf kids that i know of. the key is ask lots of questions.

 

[smilezncries1995]

i truely do sympathize for you my son was diagnosed with cf as a newborn. and we have no know history of it in our family. it can be over whelming at times. my son is now 13 and is one of the healthiest cf kids that i know of. the key is ask lots of questions.

 

[daisymae]

Hi Jana! We recently when through the full genetic test for my daughter and found out she carries the 5T but no other mutation. My husband and I are now being tested to see which of us carries the 5T and to see if there are any other mutations between the two of us. If there is a mutation, then we will have our other daughter tested. Anyway, we are going to have to tell our family which side the 5T comes from since it acts as a mutation. I'd love to hear any information that you have as far as how the 5T works when combined with another mutation. From what we've been told, it creates "atypical CF".

 

[daisymae]

Hi Jana! We recently when through the full genetic test for my daughter and found out she carries the 5T but no other mutation. My husband and I are now being tested to see which of us carries the 5T and to see if there are any other mutations between the two of us. If there is a mutation, then we will have our other daughter tested. Anyway, we are going to have to tell our family which side the 5T comes from since it acts as a mutation. I'd love to hear any information that you have as far as how the 5T works when combined with another mutation. From what we've been told, it creates "atypical CF".

 

[daisymae]

Hi Jana! We recently when through the full genetic test for my daughter and found out she carries the 5T but no other mutation. My husband and I are now being tested to see which of us carries the 5T and to see if there are any other mutations between the two of us. If there is a mutation, then we will have our other daughter tested. Anyway, we are going to have to tell our family which side the 5T comes from since it acts as a mutation. I'd love to hear any information that you have as far as how the 5T works when combined with another mutation. From what we've been told, it creates "atypical CF".

 

[daisymae]

Hi Jana! We recently when through the full genetic test for my daughter and found out she carries the 5T but no other mutation. My husband and I are now being tested to see which of us carries the 5T and to see if there are any other mutations between the two of us. If there is a mutation, then we will have our other daughter tested. Anyway, we are going to have to tell our family which side the 5T comes from since it acts as a mutation. I'd love to hear any information that you have as far as how the 5T works when combined with another mutation. From what we've been told, it creates "atypical CF".

 

[daisymae]

Hi Jana! We recently when through the full genetic test for my daughter and found out she carries the 5T but no other mutation. My husband and I are now being tested to see which of us carries the 5T and to see if there are any other mutations between the two of us. If there is a mutation, then we will have our other daughter tested. Anyway, we are going to have to tell our family which side the 5T comes from since it acts as a mutation. I'd love to hear any information that you have as far as how the 5T works when combined with another mutation. From what we've been told, it creates "atypical CF".