Sweat Test came back, what's most likely?

NancyLKF

New member
Hi! Welcome to the site. there is definitely a plan for you and your family and the next couple of weeks will be rough, but enjoy them! This could go either way for you with a 30 as the result unfortunately. My daughter with DDF508 scored a 94 on the sweat test and my daughter who is a DF508 carrier scored an 11. I sincerely hope your son doesn't have CF, but if he does you have found an invaluable resource in this site. I'll keep you in my prayers. please let us know what happens either way.
 

gregdpowell

New member
Thank you Nancy. I am trying to decide if the 30 (elevated) might have been caused by him being a carrier or possible he has some rare 2nd mutation? Of course we pray he's a carrier. He's pretty symptom free to this point. Is it normal for someone to have a 2x sweat test count on the second test? If he scores another 30 does that assume he IS positive and we just have to find the 2nd gene through a full panel?
 

gregdpowell

New member
Thank you Nancy. I am trying to decide if the 30 (elevated) might have been caused by him being a carrier or possible he has some rare 2nd mutation? Of course we pray he's a carrier. He's pretty symptom free to this point. Is it normal for someone to have a 2x sweat test count on the second test? If he scores another 30 does that assume he IS positive and we just have to find the 2nd gene through a full panel?
 

gregdpowell

New member
Thank you Nancy. I am trying to decide if the 30 (elevated) might have been caused by him being a carrier or possible he has some rare 2nd mutation? Of course we pray he's a carrier. He's pretty symptom free to this point. Is it normal for someone to have a 2x sweat test count on the second test? If he scores another 30 does that assume he IS positive and we just have to find the 2nd gene through a full panel?
 

imagine04

New member
I agree with everyone here to get the Genetic Testing done. 30 is fairly borderline but genetic testing will give you a clearer answer. I caution you though -- genetic testing is expensive so i do hope that insurance will cover some of it. If it wasn't for insurance i would've sat down and cried when we received the statement in for the costs associated with trying to find out his other mutation (and we don't even have a full answer to it yet!). <img src="i/expressions/face-icon-small-frown.gif" border="0">

With my 17wk old son (almost 18wks) his sweat tests were without a doubt positive. The first one came back at 111 and the second at 112 so we had our diagnoses the first time. My son doesn't have many symptoms yet but it's important to note that newborns *usually* don't (this is according to our clinic team)... especially on the pulmonary end of things, we've had more issues in the gastrointestinal area.

Good luck to you -- i sure hope you won't have to take up permanent residence here with us but if you do have to this is a great resource to have! I'll keep you and your family in my prayers. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

imagine04

New member
I agree with everyone here to get the Genetic Testing done. 30 is fairly borderline but genetic testing will give you a clearer answer. I caution you though -- genetic testing is expensive so i do hope that insurance will cover some of it. If it wasn't for insurance i would've sat down and cried when we received the statement in for the costs associated with trying to find out his other mutation (and we don't even have a full answer to it yet!). <img src="i/expressions/face-icon-small-frown.gif" border="0">

With my 17wk old son (almost 18wks) his sweat tests were without a doubt positive. The first one came back at 111 and the second at 112 so we had our diagnoses the first time. My son doesn't have many symptoms yet but it's important to note that newborns *usually* don't (this is according to our clinic team)... especially on the pulmonary end of things, we've had more issues in the gastrointestinal area.

Good luck to you -- i sure hope you won't have to take up permanent residence here with us but if you do have to this is a great resource to have! I'll keep you and your family in my prayers. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

imagine04

New member
I agree with everyone here to get the Genetic Testing done. 30 is fairly borderline but genetic testing will give you a clearer answer. I caution you though -- genetic testing is expensive so i do hope that insurance will cover some of it. If it wasn't for insurance i would've sat down and cried when we received the statement in for the costs associated with trying to find out his other mutation (and we don't even have a full answer to it yet!). <img src="i/expressions/face-icon-small-frown.gif" border="0">
<br />
<br />With my 17wk old son (almost 18wks) his sweat tests were without a doubt positive. The first one came back at 111 and the second at 112 so we had our diagnoses the first time. My son doesn't have many symptoms yet but it's important to note that newborns *usually* don't (this is according to our clinic team)... especially on the pulmonary end of things, we've had more issues in the gastrointestinal area.
<br />
<br />Good luck to you -- i sure hope you won't have to take up permanent residence here with us but if you do have to this is a great resource to have! I'll keep you and your family in my prayers. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

mom2owen

New member
Hi, I am by no means an expert in this whole thing, like so many of the other people here are, but I wanted to just add my two cents and support. The genetics tests are really important, and the longest wait. But hang in there, they will tell you a whole lot more. My son is 7 years old and we have suffered a full life-time of symptoms with him and have only just gotten a clinical CF diagnosis.
The first days after appointments are always the hardest for us. We find ourselves just listening and nodding at the actual appt. and then we go home and about a day and a half later, it all sinks in and we freak out. But, mind you, this has gone on for us for seven years. We have sort of become experts in the stress management game. I can say that it will get better, even if he has CF, you will know what you are up against. If it is not, you will have learned one serious lesson in patience and grace. Our son didn't have symptoms until he was four months and had is first round of RSV. His digestion wasn't bad until he tried eating food at one year old. I guess what I am trying to say is that patience is the best tool to get you through because everyone is different, even with the same disease and you will drive yourself crazy (been there done that) if you try to figure it out on your own.
So, we are all here hoping you get to exit the CF scene as quickly as you entered and to tell you that either way, it will get better. Have faith, ask questions and always know you are not alone. Find your coping zone until the next round of info comes in but believe that you have what it takes as such a loving father to endure whatever comes your way. I am thinking of you and hoping for good news.
 

mom2owen

New member
Hi, I am by no means an expert in this whole thing, like so many of the other people here are, but I wanted to just add my two cents and support. The genetics tests are really important, and the longest wait. But hang in there, they will tell you a whole lot more. My son is 7 years old and we have suffered a full life-time of symptoms with him and have only just gotten a clinical CF diagnosis.
The first days after appointments are always the hardest for us. We find ourselves just listening and nodding at the actual appt. and then we go home and about a day and a half later, it all sinks in and we freak out. But, mind you, this has gone on for us for seven years. We have sort of become experts in the stress management game. I can say that it will get better, even if he has CF, you will know what you are up against. If it is not, you will have learned one serious lesson in patience and grace. Our son didn't have symptoms until he was four months and had is first round of RSV. His digestion wasn't bad until he tried eating food at one year old. I guess what I am trying to say is that patience is the best tool to get you through because everyone is different, even with the same disease and you will drive yourself crazy (been there done that) if you try to figure it out on your own.
So, we are all here hoping you get to exit the CF scene as quickly as you entered and to tell you that either way, it will get better. Have faith, ask questions and always know you are not alone. Find your coping zone until the next round of info comes in but believe that you have what it takes as such a loving father to endure whatever comes your way. I am thinking of you and hoping for good news.
 

mom2owen

New member
Hi, I am by no means an expert in this whole thing, like so many of the other people here are, but I wanted to just add my two cents and support. The genetics tests are really important, and the longest wait. But hang in there, they will tell you a whole lot more. My son is 7 years old and we have suffered a full life-time of symptoms with him and have only just gotten a clinical CF diagnosis.
<br />The first days after appointments are always the hardest for us. We find ourselves just listening and nodding at the actual appt. and then we go home and about a day and a half later, it all sinks in and we freak out. But, mind you, this has gone on for us for seven years. We have sort of become experts in the stress management game. I can say that it will get better, even if he has CF, you will know what you are up against. If it is not, you will have learned one serious lesson in patience and grace. Our son didn't have symptoms until he was four months and had is first round of RSV. His digestion wasn't bad until he tried eating food at one year old. I guess what I am trying to say is that patience is the best tool to get you through because everyone is different, even with the same disease and you will drive yourself crazy (been there done that) if you try to figure it out on your own.
<br />So, we are all here hoping you get to exit the CF scene as quickly as you entered and to tell you that either way, it will get better. Have faith, ask questions and always know you are not alone. Find your coping zone until the next round of info comes in but believe that you have what it takes as such a loving father to endure whatever comes your way. I am thinking of you and hoping for good news.
 

NancyLKF

New member
I don't think a second borderline result would make for a CF diagnosis, but I could be wrong. Genetic testing is the BEST way to go. My second daughter's IRT levels were normal, her sweat test was 11 but I still did the genetic testing just to be sure, and our CF team was very supportive. of course we knew exactly what mutation we were looking for so it was cheap and quick.
 

NancyLKF

New member
I don't think a second borderline result would make for a CF diagnosis, but I could be wrong. Genetic testing is the BEST way to go. My second daughter's IRT levels were normal, her sweat test was 11 but I still did the genetic testing just to be sure, and our CF team was very supportive. of course we knew exactly what mutation we were looking for so it was cheap and quick.
 

NancyLKF

New member
I don't think a second borderline result would make for a CF diagnosis, but I could be wrong. Genetic testing is the BEST way to go. My second daughter's IRT levels were normal, her sweat test was 11 but I still did the genetic testing just to be sure, and our CF team was very supportive. of course we knew exactly what mutation we were looking for so it was cheap and quick.
 
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