Just ordered sweat test for 9 year old- what do I tell him

[momburchx2]

My 9 yeor old son just went to the pulmonary clinic for education on his asthma. He has had it since 18 months but the PCP never explained much to me or him. While there the Doctor check his nose, then his fingers, then had a chest xray. When he came back he told me he want to do a sweat test just to be on the safe side. Sam heard the Doctor tell me it was to rule out CF.

What do I tell him? Did I say too much?
He asked and I said the Dr. felt that all kids with his history should be tested and that from what I know it is a lung disease and that it meant he could get sick when he had colds and flus. He looked at me and said "I have it and it will get worse" I reassured him that it was just a screening and that he was extremely healthy now and even if it was CF he would still wrestle and play ball but he might have days as he gets older that he doesn't feel well but right now he has asthma and that is what we are treating. He is a bright young man and if I don't answer questions he will google it and read for himself. (gifted kids can be a pain at times they don't always acccept pat answers)

How did you all stand the waiting. We will not go for the sweat test until Dec. 5th.

 

[momburchx2]

My 9 yeor old son just went to the pulmonary clinic for education on his asthma. He has had it since 18 months but the PCP never explained much to me or him. While there the Doctor check his nose, then his fingers, then had a chest xray. When he came back he told me he want to do a sweat test just to be on the safe side. Sam heard the Doctor tell me it was to rule out CF.

What do I tell him? Did I say too much?
He asked and I said the Dr. felt that all kids with his history should be tested and that from what I know it is a lung disease and that it meant he could get sick when he had colds and flus. He looked at me and said "I have it and it will get worse" I reassured him that it was just a screening and that he was extremely healthy now and even if it was CF he would still wrestle and play ball but he might have days as he gets older that he doesn't feel well but right now he has asthma and that is what we are treating. He is a bright young man and if I don't answer questions he will google it and read for himself. (gifted kids can be a pain at times they don't always acccept pat answers)

How did you all stand the waiting. We will not go for the sweat test until Dec. 5th.

 

[momburchx2]

My 9 yeor old son just went to the pulmonary clinic for education on his asthma. He has had it since 18 months but the PCP never explained much to me or him. While there the Doctor check his nose, then his fingers, then had a chest xray. When he came back he told me he want to do a sweat test just to be on the safe side. Sam heard the Doctor tell me it was to rule out CF.

What do I tell him? Did I say too much?
He asked and I said the Dr. felt that all kids with his history should be tested and that from what I know it is a lung disease and that it meant he could get sick when he had colds and flus. He looked at me and said "I have it and it will get worse" I reassured him that it was just a screening and that he was extremely healthy now and even if it was CF he would still wrestle and play ball but he might have days as he gets older that he doesn't feel well but right now he has asthma and that is what we are treating. He is a bright young man and if I don't answer questions he will google it and read for himself. (gifted kids can be a pain at times they don't always acccept pat answers)

How did you all stand the waiting. We will not go for the sweat test until Dec. 5th.

 

[momburchx2]

My 9 yeor old son just went to the pulmonary clinic for education on his asthma. He has had it since 18 months but the PCP never explained much to me or him. While there the Doctor check his nose, then his fingers, then had a chest xray. When he came back he told me he want to do a sweat test just to be on the safe side. Sam heard the Doctor tell me it was to rule out CF.

What do I tell him? Did I say too much?
He asked and I said the Dr. felt that all kids with his history should be tested and that from what I know it is a lung disease and that it meant he could get sick when he had colds and flus. He looked at me and said "I have it and it will get worse" I reassured him that it was just a screening and that he was extremely healthy now and even if it was CF he would still wrestle and play ball but he might have days as he gets older that he doesn't feel well but right now he has asthma and that is what we are treating. He is a bright young man and if I don't answer questions he will google it and read for himself. (gifted kids can be a pain at times they don't always acccept pat answers)

How did you all stand the waiting. We will not go for the sweat test until Dec. 5th.

 

[momburchx2]

My 9 yeor old son just went to the pulmonary clinic for education on his asthma. He has had it since 18 months but the PCP never explained much to me or him. While there the Doctor check his nose, then his fingers, then had a chest xray. When he came back he told me he want to do a sweat test just to be on the safe side. Sam heard the Doctor tell me it was to rule out CF.

What do I tell him? Did I say too much?
He asked and I said the Dr. felt that all kids with his history should be tested and that from what I know it is a lung disease and that it meant he could get sick when he had colds and flus. He looked at me and said "I have it and it will get worse" I reassured him that it was just a screening and that he was extremely healthy now and even if it was CF he would still wrestle and play ball but he might have days as he gets older that he doesn't feel well but right now he has asthma and that is what we are treating. He is a bright young man and if I don't answer questions he will google it and read for himself. (gifted kids can be a pain at times they don't always acccept pat answers)

How did you all stand the waiting. We will not go for the sweat test until Dec. 5th.

 

[LouLou]

I think you handled this very well. Another thing you can tell him is proper diagnosis, whether it be asthma or cf, is important so that he gets the most appropriate and best care for a long healthy life. Bottom line so he feels well and can continue to do the things he loves. Also, brush up on the basics and go over them with him - for example that it's not contagious, etc. I probably wouldn't discuss it much if he doesn't seem concerned though because you don't want to make more of an issue of it than it is.

Could you push to have the genetic test the same day as the sweat test. Either way you'll want the genetic test so why not just get it all done in one day. The reason you'll want both is because if the sweat is positive they'll want to know his mutations and if he is negative by sweat he still could have cf just have a highly functioning CFTR (a very good thing!) This is what I did with my son. I do have to say though I had to strong arm them to agree. No idea why.

 

[LouLou]

I think you handled this very well. Another thing you can tell him is proper diagnosis, whether it be asthma or cf, is important so that he gets the most appropriate and best care for a long healthy life. Bottom line so he feels well and can continue to do the things he loves. Also, brush up on the basics and go over them with him - for example that it's not contagious, etc. I probably wouldn't discuss it much if he doesn't seem concerned though because you don't want to make more of an issue of it than it is.

Could you push to have the genetic test the same day as the sweat test. Either way you'll want the genetic test so why not just get it all done in one day. The reason you'll want both is because if the sweat is positive they'll want to know his mutations and if he is negative by sweat he still could have cf just have a highly functioning CFTR (a very good thing!) This is what I did with my son. I do have to say though I had to strong arm them to agree. No idea why.

 

[LouLou]

I think you handled this very well. Another thing you can tell him is proper diagnosis, whether it be asthma or cf, is important so that he gets the most appropriate and best care for a long healthy life. Bottom line so he feels well and can continue to do the things he loves. Also, brush up on the basics and go over them with him - for example that it's not contagious, etc. I probably wouldn't discuss it much if he doesn't seem concerned though because you don't want to make more of an issue of it than it is.

Could you push to have the genetic test the same day as the sweat test. Either way you'll want the genetic test so why not just get it all done in one day. The reason you'll want both is because if the sweat is positive they'll want to know his mutations and if he is negative by sweat he still could have cf just have a highly functioning CFTR (a very good thing!) This is what I did with my son. I do have to say though I had to strong arm them to agree. No idea why.

 

[LouLou]

I think you handled this very well. Another thing you can tell him is proper diagnosis, whether it be asthma or cf, is important so that he gets the most appropriate and best care for a long healthy life. Bottom line so he feels well and can continue to do the things he loves. Also, brush up on the basics and go over them with him - for example that it's not contagious, etc. I probably wouldn't discuss it much if he doesn't seem concerned though because you don't want to make more of an issue of it than it is.

Could you push to have the genetic test the same day as the sweat test. Either way you'll want the genetic test so why not just get it all done in one day. The reason you'll want both is because if the sweat is positive they'll want to know his mutations and if he is negative by sweat he still could have cf just have a highly functioning CFTR (a very good thing!) This is what I did with my son. I do have to say though I had to strong arm them to agree. No idea why.

 

[LouLou]

I think you handled this very well. Another thing you can tell him is proper diagnosis, whether it be asthma or cf, is important so that he gets the most appropriate and best care for a long healthy life. Bottom line so he feels well and can continue to do the things he loves. Also, brush up on the basics and go over them with him - for example that it's not contagious, etc. I probably wouldn't discuss it much if he doesn't seem concerned though because you don't want to make more of an issue of it than it is.

Could you push to have the genetic test the same day as the sweat test. Either way you'll want the genetic test so why not just get it all done in one day. The reason you'll want both is because if the sweat is positive they'll want to know his mutations and if he is negative by sweat he still could have cf just have a highly functioning CFTR (a very good thing!) This is what I did with my son. I do have to say though I had to strong arm them to agree. No idea why.

 

[Alyssa]

I agree with Lauren -- you did an excellent job for now - there isn't much else to do or say until you know if he has CF or not.

If he does -- it sounds like he will be educating himself too! Just make sure you keep an eye on what he reads - there is a lot of outdated material out there that would probably have him condensed he should be dropping dead in a matter of weeks. .....as a side note here my son at about 19 or 20 years old thought he was only going to live to be about 35 years old because that's what the CFF says in their literature! They quote a median age of 36 or 37 .....It's a statistic and it is "median" so it doesn't really mean a whole lot to a lot of people.

My daughter was 14 when she was sent for genetic testing. We did not do a lot of reading up on CF at the time, (prior to getting the test results) but once she was told she had CF for sure (because of the genetic testing) her first question was "is it progressive"

All you can do is support, inform and educate.

Do be sure to ask what the sweat test number is - especially if they tell you it is negative -- there are so many people with genetically confirmed cases who have normal sweat test numbers -- it is not always accurate if it is negative and you have symptoms. But if it is positive it is very likely to be accurate and genetic testing would normally follow anyway.

That is a good idea to get both done on the same day if they will agree to it - also some places can give you sweat test results within a couple of hours - others are a couple of days - so depending on that and how far away from the facility you are you could be asking about that too....if you have to travel to the facility you would want to get both things done at the same time - the genetic testing is just a blood draw --- getting them to order a FULL genetic test is the hard part, most of the time they want to do a cheaper screening of less than 100 genes.... keep in mind there are now over 1,800 genes to test for...why look for anything less than all of them?

Best of luck, please keep us posted.

 

[Alyssa]

I agree with Lauren -- you did an excellent job for now - there isn't much else to do or say until you know if he has CF or not.

If he does -- it sounds like he will be educating himself too! Just make sure you keep an eye on what he reads - there is a lot of outdated material out there that would probably have him condensed he should be dropping dead in a matter of weeks. .....as a side note here my son at about 19 or 20 years old thought he was only going to live to be about 35 years old because that's what the CFF says in their literature! They quote a median age of 36 or 37 .....It's a statistic and it is "median" so it doesn't really mean a whole lot to a lot of people.

My daughter was 14 when she was sent for genetic testing. We did not do a lot of reading up on CF at the time, (prior to getting the test results) but once she was told she had CF for sure (because of the genetic testing) her first question was "is it progressive"

All you can do is support, inform and educate.

Do be sure to ask what the sweat test number is - especially if they tell you it is negative -- there are so many people with genetically confirmed cases who have normal sweat test numbers -- it is not always accurate if it is negative and you have symptoms. But if it is positive it is very likely to be accurate and genetic testing would normally follow anyway.

That is a good idea to get both done on the same day if they will agree to it - also some places can give you sweat test results within a couple of hours - others are a couple of days - so depending on that and how far away from the facility you are you could be asking about that too....if you have to travel to the facility you would want to get both things done at the same time - the genetic testing is just a blood draw --- getting them to order a FULL genetic test is the hard part, most of the time they want to do a cheaper screening of less than 100 genes.... keep in mind there are now over 1,800 genes to test for...why look for anything less than all of them?

Best of luck, please keep us posted.

 

[Alyssa]

I agree with Lauren -- you did an excellent job for now - there isn't much else to do or say until you know if he has CF or not.

If he does -- it sounds like he will be educating himself too! Just make sure you keep an eye on what he reads - there is a lot of outdated material out there that would probably have him condensed he should be dropping dead in a matter of weeks. .....as a side note here my son at about 19 or 20 years old thought he was only going to live to be about 35 years old because that's what the CFF says in their literature! They quote a median age of 36 or 37 .....It's a statistic and it is "median" so it doesn't really mean a whole lot to a lot of people.

My daughter was 14 when she was sent for genetic testing. We did not do a lot of reading up on CF at the time, (prior to getting the test results) but once she was told she had CF for sure (because of the genetic testing) her first question was "is it progressive"

All you can do is support, inform and educate.

Do be sure to ask what the sweat test number is - especially if they tell you it is negative -- there are so many people with genetically confirmed cases who have normal sweat test numbers -- it is not always accurate if it is negative and you have symptoms. But if it is positive it is very likely to be accurate and genetic testing would normally follow anyway.

That is a good idea to get both done on the same day if they will agree to it - also some places can give you sweat test results within a couple of hours - others are a couple of days - so depending on that and how far away from the facility you are you could be asking about that too....if you have to travel to the facility you would want to get both things done at the same time - the genetic testing is just a blood draw --- getting them to order a FULL genetic test is the hard part, most of the time they want to do a cheaper screening of less than 100 genes.... keep in mind there are now over 1,800 genes to test for...why look for anything less than all of them?

Best of luck, please keep us posted.

 

[Alyssa]

I agree with Lauren -- you did an excellent job for now - there isn't much else to do or say until you know if he has CF or not.

If he does -- it sounds like he will be educating himself too! Just make sure you keep an eye on what he reads - there is a lot of outdated material out there that would probably have him condensed he should be dropping dead in a matter of weeks. .....as a side note here my son at about 19 or 20 years old thought he was only going to live to be about 35 years old because that's what the CFF says in their literature! They quote a median age of 36 or 37 .....It's a statistic and it is "median" so it doesn't really mean a whole lot to a lot of people.

My daughter was 14 when she was sent for genetic testing. We did not do a lot of reading up on CF at the time, (prior to getting the test results) but once she was told she had CF for sure (because of the genetic testing) her first question was "is it progressive"

All you can do is support, inform and educate.

Do be sure to ask what the sweat test number is - especially if they tell you it is negative -- there are so many people with genetically confirmed cases who have normal sweat test numbers -- it is not always accurate if it is negative and you have symptoms. But if it is positive it is very likely to be accurate and genetic testing would normally follow anyway.

That is a good idea to get both done on the same day if they will agree to it - also some places can give you sweat test results within a couple of hours - others are a couple of days - so depending on that and how far away from the facility you are you could be asking about that too....if you have to travel to the facility you would want to get both things done at the same time - the genetic testing is just a blood draw --- getting them to order a FULL genetic test is the hard part, most of the time they want to do a cheaper screening of less than 100 genes.... keep in mind there are now over 1,800 genes to test for...why look for anything less than all of them?

Best of luck, please keep us posted.

 

[Alyssa]

I agree with Lauren -- you did an excellent job for now - there isn't much else to do or say until you know if he has CF or not.

If he does -- it sounds like he will be educating himself too! Just make sure you keep an eye on what he reads - there is a lot of outdated material out there that would probably have him condensed he should be dropping dead in a matter of weeks. .....as a side note here my son at about 19 or 20 years old thought he was only going to live to be about 35 years old because that's what the CFF says in their literature! They quote a median age of 36 or 37 .....It's a statistic and it is "median" so it doesn't really mean a whole lot to a lot of people.

My daughter was 14 when she was sent for genetic testing. We did not do a lot of reading up on CF at the time, (prior to getting the test results) but once she was told she had CF for sure (because of the genetic testing) her first question was "is it progressive"

All you can do is support, inform and educate.

Do be sure to ask what the sweat test number is - especially if they tell you it is negative -- there are so many people with genetically confirmed cases who have normal sweat test numbers -- it is not always accurate if it is negative and you have symptoms. But if it is positive it is very likely to be accurate and genetic testing would normally follow anyway.

That is a good idea to get both done on the same day if they will agree to it - also some places can give you sweat test results within a couple of hours - others are a couple of days - so depending on that and how far away from the facility you are you could be asking about that too....if you have to travel to the facility you would want to get both things done at the same time - the genetic testing is just a blood draw --- getting them to order a FULL genetic test is the hard part, most of the time they want to do a cheaper screening of less than 100 genes.... keep in mind there are now over 1,800 genes to test for...why look for anything less than all of them?

Best of luck, please keep us posted.

 

[momburchx2]

I thought I had answered all Sam's questions and that he was okay with the sweat test and all until today. On the way to school Sam was talking about his field trip next week and then out of the blue he commented that it was almost Dec. 5th. I know he has a field trip on Dec 4th and the test on Dec. 5th so I asked what was Dec. 5th. He replied his next Doctor's appt and that sweat test.

I tried to play it off a little so he won't get overly worried so I answered "well I guess I can't tell you not to "sweat" about it since you'll be sweating during it" and just kinda chuckled at my bad joke.

It is hard waiting and I know he is worried. I just don't know how to calm his fears. Maybe the excitment of thanksgiving and seeing his Aunt and planning our trip to CA this summer will help keep his mind off of things.

15 more days and counting.

 

[momburchx2]

I thought I had answered all Sam's questions and that he was okay with the sweat test and all until today. On the way to school Sam was talking about his field trip next week and then out of the blue he commented that it was almost Dec. 5th. I know he has a field trip on Dec 4th and the test on Dec. 5th so I asked what was Dec. 5th. He replied his next Doctor's appt and that sweat test.

I tried to play it off a little so he won't get overly worried so I answered "well I guess I can't tell you not to "sweat" about it since you'll be sweating during it" and just kinda chuckled at my bad joke.

It is hard waiting and I know he is worried. I just don't know how to calm his fears. Maybe the excitment of thanksgiving and seeing his Aunt and planning our trip to CA this summer will help keep his mind off of things.

15 more days and counting.

 

[momburchx2]

I thought I had answered all Sam's questions and that he was okay with the sweat test and all until today. On the way to school Sam was talking about his field trip next week and then out of the blue he commented that it was almost Dec. 5th. I know he has a field trip on Dec 4th and the test on Dec. 5th so I asked what was Dec. 5th. He replied his next Doctor's appt and that sweat test.

I tried to play it off a little so he won't get overly worried so I answered "well I guess I can't tell you not to "sweat" about it since you'll be sweating during it" and just kinda chuckled at my bad joke.

It is hard waiting and I know he is worried. I just don't know how to calm his fears. Maybe the excitment of thanksgiving and seeing his Aunt and planning our trip to CA this summer will help keep his mind off of things.

15 more days and counting.

 

[momburchx2]

I thought I had answered all Sam's questions and that he was okay with the sweat test and all until today. On the way to school Sam was talking about his field trip next week and then out of the blue he commented that it was almost Dec. 5th. I know he has a field trip on Dec 4th and the test on Dec. 5th so I asked what was Dec. 5th. He replied his next Doctor's appt and that sweat test.

I tried to play it off a little so he won't get overly worried so I answered "well I guess I can't tell you not to "sweat" about it since you'll be sweating during it" and just kinda chuckled at my bad joke.

It is hard waiting and I know he is worried. I just don't know how to calm his fears. Maybe the excitment of thanksgiving and seeing his Aunt and planning our trip to CA this summer will help keep his mind off of things.

15 more days and counting.

 

[momburchx2]

I thought I had answered all Sam's questions and that he was okay with the sweat test and all until today. On the way to school Sam was talking about his field trip next week and then out of the blue he commented that it was almost Dec. 5th. I know he has a field trip on Dec 4th and the test on Dec. 5th so I asked what was Dec. 5th. He replied his next Doctor's appt and that sweat test.

I tried to play it off a little so he won't get overly worried so I answered "well I guess I can't tell you not to "sweat" about it since you'll be sweating during it" and just kinda chuckled at my bad joke.

It is hard waiting and I know he is worried. I just don't know how to calm his fears. Maybe the excitment of thanksgiving and seeing his Aunt and planning our trip to CA this summer will help keep his mind off of things.

15 more days and counting.