5 yo son had 1st sweat test of 89

[scrapper1264]

So I'm a newbie here. He was diagnosed with asthma about 1 1/2 yrs ago and has not responded to the meds, so the pulmonologist who we started seeing 3 mos. ago ordered a sweat test last week. We have an appt with the dr on Friday to discuss further testing.

He has not had a problem gaining weight so I'm thinking the CF is just affecting his lungs? He did spit up a lot when he was a baby but he gained weight so it didn't seem to be an issue.

I'm feeling a bit blue now because I found out I was a CF carrier a couple of years ago when I was pg (which resulted in m/c). OB asked how old my son was and I said almost 3, and he said well he would have been diagnosed by now so he's fine. I know there is nothing I can do about it now but now I'm thinking of all the lung damage that could have been prevented.

I have a list of questions to ask the dr on Friday but am wondering if I s/b doing anything differently right now with my son.

Thanks!!

 

[scrapper1264]

So I'm a newbie here. He was diagnosed with asthma about 1 1/2 yrs ago and has not responded to the meds, so the pulmonologist who we started seeing 3 mos. ago ordered a sweat test last week. We have an appt with the dr on Friday to discuss further testing.

He has not had a problem gaining weight so I'm thinking the CF is just affecting his lungs? He did spit up a lot when he was a baby but he gained weight so it didn't seem to be an issue.

I'm feeling a bit blue now because I found out I was a CF carrier a couple of years ago when I was pg (which resulted in m/c). OB asked how old my son was and I said almost 3, and he said well he would have been diagnosed by now so he's fine. I know there is nothing I can do about it now but now I'm thinking of all the lung damage that could have been prevented.

I have a list of questions to ask the dr on Friday but am wondering if I s/b doing anything differently right now with my son.

Thanks!!

 

[scrapper1264]

So I'm a newbie here. He was diagnosed with asthma about 1 1/2 yrs ago and has not responded to the meds, so the pulmonologist who we started seeing 3 mos. ago ordered a sweat test last week. We have an appt with the dr on Friday to discuss further testing.

He has not had a problem gaining weight so I'm thinking the CF is just affecting his lungs? He did spit up a lot when he was a baby but he gained weight so it didn't seem to be an issue.

I'm feeling a bit blue now because I found out I was a CF carrier a couple of years ago when I was pg (which resulted in m/c). OB asked how old my son was and I said almost 3, and he said well he would have been diagnosed by now so he's fine. I know there is nothing I can do about it now but now I'm thinking of all the lung damage that could have been prevented.

I have a list of questions to ask the dr on Friday but am wondering if I s/b doing anything differently right now with my son.

Thanks!!

 

[scrapper1264]

So I'm a newbie here. He was diagnosed with asthma about 1 1/2 yrs ago and has not responded to the meds, so the pulmonologist who we started seeing 3 mos. ago ordered a sweat test last week. We have an appt with the dr on Friday to discuss further testing.

He has not had a problem gaining weight so I'm thinking the CF is just affecting his lungs? He did spit up a lot when he was a baby but he gained weight so it didn't seem to be an issue.

I'm feeling a bit blue now because I found out I was a CF carrier a couple of years ago when I was pg (which resulted in m/c). OB asked how old my son was and I said almost 3, and he said well he would have been diagnosed by now so he's fine. I know there is nothing I can do about it now but now I'm thinking of all the lung damage that could have been prevented.

I have a list of questions to ask the dr on Friday but am wondering if I s/b doing anything differently right now with my son.

Thanks!!

 

[scrapper1264]

So I'm a newbie here. He was diagnosed with asthma about 1 1/2 yrs ago and has not responded to the meds, so the pulmonologist who we started seeing 3 mos. ago ordered a sweat test last week. We have an appt with the dr on Friday to discuss further testing.

He has not had a problem gaining weight so I'm thinking the CF is just affecting his lungs? He did spit up a lot when he was a baby but he gained weight so it didn't seem to be an issue.

I'm feeling a bit blue now because I found out I was a CF carrier a couple of years ago when I was pg (which resulted in m/c). OB asked how old my son was and I said almost 3, and he said well he would have been diagnosed by now so he's fine. I know there is nothing I can do about it now but now I'm thinking of all the lung damage that could have been prevented.

I have a list of questions to ask the dr on Friday but am wondering if I s/b doing anything differently right now with my son.

Thanks!!

 

[lilismom]

Hi,
Welcome. My daughter was diagnosed late as well (3 yrs). She had a chronic cough and nasal congestion every winter and was on the small size despite the fact that she ate as much as an adult.

I'm sure the Dr will get your son started on some type of chest PT and add some meds that will help. It's all very overwelming at first but it does get easier.

 

[lilismom]

Hi,
Welcome. My daughter was diagnosed late as well (3 yrs). She had a chronic cough and nasal congestion every winter and was on the small size despite the fact that she ate as much as an adult.

I'm sure the Dr will get your son started on some type of chest PT and add some meds that will help. It's all very overwelming at first but it does get easier.

 

[lilismom]

Hi,
Welcome. My daughter was diagnosed late as well (3 yrs). She had a chronic cough and nasal congestion every winter and was on the small size despite the fact that she ate as much as an adult.

I'm sure the Dr will get your son started on some type of chest PT and add some meds that will help. It's all very overwelming at first but it does get easier.

 

[lilismom]

Hi,
Welcome. My daughter was diagnosed late as well (3 yrs). She had a chronic cough and nasal congestion every winter and was on the small size despite the fact that she ate as much as an adult.

I'm sure the Dr will get your son started on some type of chest PT and add some meds that will help. It's all very overwelming at first but it does get easier.

 

[lilismom]

Hi,
Welcome. My daughter was diagnosed late as well (3 yrs). She had a chronic cough and nasal congestion every winter and was on the small size despite the fact that she ate as much as an adult.

I'm sure the Dr will get your son started on some type of chest PT and add some meds that will help. It's all very overwelming at first but it does get easier.

 

[kale65]

My daughter had a full genetic screening at birth to verify that she has CF. She actually never had a sweat test, which I hear many people referring to for diagnosis. Maybe you should request that for your son if you are concerned. I don't believe that genetic screening are mistakeable.

 

[kale65]

My daughter had a full genetic screening at birth to verify that she has CF. She actually never had a sweat test, which I hear many people referring to for diagnosis. Maybe you should request that for your son if you are concerned. I don't believe that genetic screening are mistakeable.

 

[kale65]

My daughter had a full genetic screening at birth to verify that she has CF. She actually never had a sweat test, which I hear many people referring to for diagnosis. Maybe you should request that for your son if you are concerned. I don't believe that genetic screening are mistakeable.

 

[kale65]

My daughter had a full genetic screening at birth to verify that she has CF. She actually never had a sweat test, which I hear many people referring to for diagnosis. Maybe you should request that for your son if you are concerned. I don't believe that genetic screening are mistakeable.

 

[kale65]

My daughter had a full genetic screening at birth to verify that she has CF. She actually never had a sweat test, which I hear many people referring to for diagnosis. Maybe you should request that for your son if you are concerned. I don't believe that genetic screening are mistakeable.

 

[Alyssa]

I'm sorry you are having a difficult time - I know it's not a very good feeling to get a positive diagnosis for CF, but the good news is, at least you know how to proceed with the correct treatments now. You may also not have any permanent lung damage yet - (unless you have already been told otherwise) I wouldn't assume yet that he does have permanent damage - many people with CF don't see that until they are much older than 3.

I'm sure you will be moving on to a certified CF clinic and pulmonologist. You will get swamped with more information that you think is possible to hear, but over time it gets easier to keep it all straight.

I'm sorry that your OB mislead you when he said your son is fine because by three years old he would have been diagnosed... this is a very inaccurate and outdated statement.

Yes, it is very possible to be pancreatic sufficient and not have any digestive problems.

Was the sweat test at a certified CF center? Be sure to ask the doctor is he will be ordering a FULL genetic testing. There are at least 1,541 (I just heard 1,800 but I haven't confirmed that myself yet) known CF genes to test for - do not let them only test for 97 genes.

If you have time, you might want to read the first entry of my blog page for details about my kids (they do not have digestive issues either)

Best of luck! Please let us know how it goes for you on Friday.

 

[Alyssa]

I'm sorry you are having a difficult time - I know it's not a very good feeling to get a positive diagnosis for CF, but the good news is, at least you know how to proceed with the correct treatments now. You may also not have any permanent lung damage yet - (unless you have already been told otherwise) I wouldn't assume yet that he does have permanent damage - many people with CF don't see that until they are much older than 3.

I'm sure you will be moving on to a certified CF clinic and pulmonologist. You will get swamped with more information that you think is possible to hear, but over time it gets easier to keep it all straight.

I'm sorry that your OB mislead you when he said your son is fine because by three years old he would have been diagnosed... this is a very inaccurate and outdated statement.

Yes, it is very possible to be pancreatic sufficient and not have any digestive problems.

Was the sweat test at a certified CF center? Be sure to ask the doctor is he will be ordering a FULL genetic testing. There are at least 1,541 (I just heard 1,800 but I haven't confirmed that myself yet) known CF genes to test for - do not let them only test for 97 genes.

If you have time, you might want to read the first entry of my blog page for details about my kids (they do not have digestive issues either)

Best of luck! Please let us know how it goes for you on Friday.

 

[Alyssa]

I'm sorry you are having a difficult time - I know it's not a very good feeling to get a positive diagnosis for CF, but the good news is, at least you know how to proceed with the correct treatments now. You may also not have any permanent lung damage yet - (unless you have already been told otherwise) I wouldn't assume yet that he does have permanent damage - many people with CF don't see that until they are much older than 3.

I'm sure you will be moving on to a certified CF clinic and pulmonologist. You will get swamped with more information that you think is possible to hear, but over time it gets easier to keep it all straight.

I'm sorry that your OB mislead you when he said your son is fine because by three years old he would have been diagnosed... this is a very inaccurate and outdated statement.

Yes, it is very possible to be pancreatic sufficient and not have any digestive problems.

Was the sweat test at a certified CF center? Be sure to ask the doctor is he will be ordering a FULL genetic testing. There are at least 1,541 (I just heard 1,800 but I haven't confirmed that myself yet) known CF genes to test for - do not let them only test for 97 genes.

If you have time, you might want to read the first entry of my blog page for details about my kids (they do not have digestive issues either)

Best of luck! Please let us know how it goes for you on Friday.

 

[Alyssa]

I'm sorry you are having a difficult time - I know it's not a very good feeling to get a positive diagnosis for CF, but the good news is, at least you know how to proceed with the correct treatments now. You may also not have any permanent lung damage yet - (unless you have already been told otherwise) I wouldn't assume yet that he does have permanent damage - many people with CF don't see that until they are much older than 3.

I'm sure you will be moving on to a certified CF clinic and pulmonologist. You will get swamped with more information that you think is possible to hear, but over time it gets easier to keep it all straight.

I'm sorry that your OB mislead you when he said your son is fine because by three years old he would have been diagnosed... this is a very inaccurate and outdated statement.

Yes, it is very possible to be pancreatic sufficient and not have any digestive problems.

Was the sweat test at a certified CF center? Be sure to ask the doctor is he will be ordering a FULL genetic testing. There are at least 1,541 (I just heard 1,800 but I haven't confirmed that myself yet) known CF genes to test for - do not let them only test for 97 genes.

If you have time, you might want to read the first entry of my blog page for details about my kids (they do not have digestive issues either)

Best of luck! Please let us know how it goes for you on Friday.

 

[Alyssa]

I'm sorry you are having a difficult time - I know it's not a very good feeling to get a positive diagnosis for CF, but the good news is, at least you know how to proceed with the correct treatments now. You may also not have any permanent lung damage yet - (unless you have already been told otherwise) I wouldn't assume yet that he does have permanent damage - many people with CF don't see that until they are much older than 3.

I'm sure you will be moving on to a certified CF clinic and pulmonologist. You will get swamped with more information that you think is possible to hear, but over time it gets easier to keep it all straight.

I'm sorry that your OB mislead you when he said your son is fine because by three years old he would have been diagnosed... this is a very inaccurate and outdated statement.

Yes, it is very possible to be pancreatic sufficient and not have any digestive problems.

Was the sweat test at a certified CF center? Be sure to ask the doctor is he will be ordering a FULL genetic testing. There are at least 1,541 (I just heard 1,800 but I haven't confirmed that myself yet) known CF genes to test for - do not let them only test for 97 genes.

If you have time, you might want to read the first entry of my blog page for details about my kids (they do not have digestive issues either)

Best of luck! Please let us know how it goes for you on Friday.