Just my story so far...

[tammykrumrey]

I do not know about the preliminary testing and how accurate it is. But I can tell you that sweat test are not always 100% accurate. There are many on this site that have had sweat test come back normal, but the genetic test come back positive.

I do think that it is a good idea to have all the kids tested for CF/carrier status. I don't think you have to rush out and do it immediately, unless one is showing any symptoms.

As far all three siblings being carriers, yes that can absolutely happen. I have two girls with CF, and my sister had one son with CF, so we both have to be CF carriers. And obivously my husband is a carrier, and we know that his sister is a carrier and we know that her 6 year old daughter is also a carrier. My sister has not had her other two sons tested yet for carrier status, but will as they get older and it becomes more of an issue.

 

[Ratatosk]

According to the info on newborn screening in our state, there's a notation that should there be a positive test for CF, additional screening is important as there are some carriers who test positive with the heel stick test.

 

[Ratatosk]

According to the info on newborn screening in our state, there's a notation that should there be a positive test for CF, additional screening is important as there are some carriers who test positive with the heel stick test.

 

[Ratatosk]

According to the info on newborn screening in our state, there's a notation that should there be a positive test for CF, additional screening is important as there are some carriers who test positive with the heel stick test.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ConcernedAunt</b></i>
Will he be a normal little boy or will he have to live in a bubble? </end quote></div>

Just had to comment on this. If he does have CF, he will NOT have to live in a bubble. I was born 23 years ago, when CF was still in the "dark ages" so to speak. They hadn't even specified the CF gene yet. And I went to school like any kid. I played in dirt, with worms and frogs. I went swimming, had sleepovers. The whole deal. No child with CF needs to live in any kind of bubble. Ever. He won't be <u>normal</u>, as he'll have to deal with meds and docs and stuff, but he'll still be able to do normal stuff. So keep that in mind. And I hope it helps the anxiety some. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ConcernedAunt</b></i>
Will he be a normal little boy or will he have to live in a bubble? </end quote></div>

Just had to comment on this. If he does have CF, he will NOT have to live in a bubble. I was born 23 years ago, when CF was still in the "dark ages" so to speak. They hadn't even specified the CF gene yet. And I went to school like any kid. I played in dirt, with worms and frogs. I went swimming, had sleepovers. The whole deal. No child with CF needs to live in any kind of bubble. Ever. He won't be <u>normal</u>, as he'll have to deal with meds and docs and stuff, but he'll still be able to do normal stuff. So keep that in mind. And I hope it helps the anxiety some. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ConcernedAunt</b></i>
Will he be a normal little boy or will he have to live in a bubble? </end quote></div>

Just had to comment on this. If he does have CF, he will NOT have to live in a bubble. I was born 23 years ago, when CF was still in the "dark ages" so to speak. They hadn't even specified the CF gene yet. And I went to school like any kid. I played in dirt, with worms and frogs. I went swimming, had sleepovers. The whole deal. No child with CF needs to live in any kind of bubble. Ever. He won't be <u>normal</u>, as he'll have to deal with meds and docs and stuff, but he'll still be able to do normal stuff. So keep that in mind. And I hope it helps the anxiety some. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Alyssa]

Ditto to the "normal sweat tests do not always mean no CF" See my blog (link below)

Yes, it is possible to have only weight gain issues and nothing else at this point - that is very common. On the other hand there are also several other possibilities as to why a baby wouldn't be putting on weight besides CF. The only way to know for sure is to get more follow up care. If that is done at a certified CF center with Pulmonary & GI docs who are familiar with working with CF that would be best. So many "regular" docs out there are just not familiar enough with the varied possibilities of symptoms and such - each case is very different and it is easy to miss things if you are not working with a specifically experienced doctor.

I know it's tough, but keep at it until you know for sure. In the long run it is better to know for sure so the child can get the very best treatment. My daughter should have been diagnosed 8 years before she was, but because I trusted two different doctors who said "normal sweat test at 38" means no CF, she was not diagnosed or treated correctly for those 8 years. If this child's sweat tests are anywhere in the 30's or above you should insist on full genetic testing to rule out CF.

In my opinion testing parents for carrier status is a waste of money. (unless said parent's haven't conceived yet) It's the children of the possible carrier parents that need to be tested. If anyone is showing symptoms they should be tested. The ones that are not showing any symptoms can wait until there is a positive diagnosis of a sibling - it is generally accepted that if one sibling tests positive then all siblings should be tested, with or without symptoms.

Best of luck, and keep us posted.

 

[Alyssa]

Ditto to the "normal sweat tests do not always mean no CF" See my blog (link below)

Yes, it is possible to have only weight gain issues and nothing else at this point - that is very common. On the other hand there are also several other possibilities as to why a baby wouldn't be putting on weight besides CF. The only way to know for sure is to get more follow up care. If that is done at a certified CF center with Pulmonary & GI docs who are familiar with working with CF that would be best. So many "regular" docs out there are just not familiar enough with the varied possibilities of symptoms and such - each case is very different and it is easy to miss things if you are not working with a specifically experienced doctor.

I know it's tough, but keep at it until you know for sure. In the long run it is better to know for sure so the child can get the very best treatment. My daughter should have been diagnosed 8 years before she was, but because I trusted two different doctors who said "normal sweat test at 38" means no CF, she was not diagnosed or treated correctly for those 8 years. If this child's sweat tests are anywhere in the 30's or above you should insist on full genetic testing to rule out CF.

In my opinion testing parents for carrier status is a waste of money. (unless said parent's haven't conceived yet) It's the children of the possible carrier parents that need to be tested. If anyone is showing symptoms they should be tested. The ones that are not showing any symptoms can wait until there is a positive diagnosis of a sibling - it is generally accepted that if one sibling tests positive then all siblings should be tested, with or without symptoms.

Best of luck, and keep us posted.

 

[Alyssa]

Ditto to the "normal sweat tests do not always mean no CF" See my blog (link below)

Yes, it is possible to have only weight gain issues and nothing else at this point - that is very common. On the other hand there are also several other possibilities as to why a baby wouldn't be putting on weight besides CF. The only way to know for sure is to get more follow up care. If that is done at a certified CF center with Pulmonary & GI docs who are familiar with working with CF that would be best. So many "regular" docs out there are just not familiar enough with the varied possibilities of symptoms and such - each case is very different and it is easy to miss things if you are not working with a specifically experienced doctor.

I know it's tough, but keep at it until you know for sure. In the long run it is better to know for sure so the child can get the very best treatment. My daughter should have been diagnosed 8 years before she was, but because I trusted two different doctors who said "normal sweat test at 38" means no CF, she was not diagnosed or treated correctly for those 8 years. If this child's sweat tests are anywhere in the 30's or above you should insist on full genetic testing to rule out CF.

In my opinion testing parents for carrier status is a waste of money. (unless said parent's haven't conceived yet) It's the children of the possible carrier parents that need to be tested. If anyone is showing symptoms they should be tested. The ones that are not showing any symptoms can wait until there is a positive diagnosis of a sibling - it is generally accepted that if one sibling tests positive then all siblings should be tested, with or without symptoms.

Best of luck, and keep us posted.