44/43 sweat test results.......lots of questions???????

C

clawson5104

New member
hi, i'm new here....obviously. my 21mo son's sweat test results were 43 & 44. his pulmonologist called me with the results and advised me that this "more than likely" meant that he had cf. there is no known knowledge of cf family, but he has had alot of trouble with his health. when he was born he had a bm before he was born, but the said everything was fine. he continuously caught every respiratory virus coming and going. two hospital stays with pneumonia, and several early pneumonia, sinusitis,uri, etc.etc. trouble with bowel movements.....going from constipation to 8 days of diarrhea. large and smelly bm's, and back to constipation. he doesn't have as much constipation now that he doesn't drink milk. once weaned he won't touch it. but he does eat cheese. he has never gained weight very good either. he has been at 23lbs for more than 3 mos. and then dropped down to 22lbs 2 wks ago. with all the respiratory issues they decided he definitely had asthma, and had to have pulmcort and albuterol, singulair daily. on top of 1/2 flinstone vitamin. (he's also anemic)

in a nut shell he does have alot of the cf symptoms. but was wondering in everyone's experience does borderline results typically end with a cf result? he goes back to the pulmonologist next week to discuss further testing(genetic), teach me "clapping" and everything else i need to start on.

and if he does have cf, what do i do as far as my home? Like..... can i keep my dog?carpet okay? certain linens, etc. air systems...etc. please i could use any info and advice available......


thank you.
 
C

clawson5104

New member
hi, i'm new here....obviously. my 21mo son's sweat test results were 43 & 44. his pulmonologist called me with the results and advised me that this "more than likely" meant that he had cf. there is no known knowledge of cf family, but he has had alot of trouble with his health. when he was born he had a bm before he was born, but the said everything was fine. he continuously caught every respiratory virus coming and going. two hospital stays with pneumonia, and several early pneumonia, sinusitis,uri, etc.etc. trouble with bowel movements.....going from constipation to 8 days of diarrhea. large and smelly bm's, and back to constipation. he doesn't have as much constipation now that he doesn't drink milk. once weaned he won't touch it. but he does eat cheese. he has never gained weight very good either. he has been at 23lbs for more than 3 mos. and then dropped down to 22lbs 2 wks ago. with all the respiratory issues they decided he definitely had asthma, and had to have pulmcort and albuterol, singulair daily. on top of 1/2 flinstone vitamin. (he's also anemic)

in a nut shell he does have alot of the cf symptoms. but was wondering in everyone's experience does borderline results typically end with a cf result? he goes back to the pulmonologist next week to discuss further testing(genetic), teach me "clapping" and everything else i need to start on.

and if he does have cf, what do i do as far as my home? Like..... can i keep my dog?carpet okay? certain linens, etc. air systems...etc. please i could use any info and advice available......


thank you.
 
C

clawson5104

New member
hi, i'm new here....obviously. my 21mo son's sweat test results were 43 & 44. his pulmonologist called me with the results and advised me that this "more than likely" meant that he had cf. there is no known knowledge of cf family, but he has had alot of trouble with his health. when he was born he had a bm before he was born, but the said everything was fine. he continuously caught every respiratory virus coming and going. two hospital stays with pneumonia, and several early pneumonia, sinusitis,uri, etc.etc. trouble with bowel movements.....going from constipation to 8 days of diarrhea. large and smelly bm's, and back to constipation. he doesn't have as much constipation now that he doesn't drink milk. once weaned he won't touch it. but he does eat cheese. he has never gained weight very good either. he has been at 23lbs for more than 3 mos. and then dropped down to 22lbs 2 wks ago. with all the respiratory issues they decided he definitely had asthma, and had to have pulmcort and albuterol, singulair daily. on top of 1/2 flinstone vitamin. (he's also anemic)

in a nut shell he does have alot of the cf symptoms. but was wondering in everyone's experience does borderline results typically end with a cf result? he goes back to the pulmonologist next week to discuss further testing(genetic), teach me "clapping" and everything else i need to start on.

and if he does have cf, what do i do as far as my home? Like..... can i keep my dog?carpet okay? certain linens, etc. air systems...etc. please i could use any info and advice available......


thank you.
 
J

JazzysMom

New member
OK......the sweat tests use to be the only test available and it served the purpose. Now that genetic testing is available and gives a more accurate picture and Most of us consider the sweat test as a tool in the diagosing process and not the sole indicator. Your sons symptoms are classic of CF and no known family history is very common. We have a few people on the forum that have had low or borderline sweat tests results only to confirm CF thru genetic testing. As far as your home......it really depends on the CFer. Many of us have allergies and asmtha in addition to the CF which of course could become an issue swith animals, carpets etc. Some people are willing to deal with the negative physical aspects of animals etc in order to have the positive mental/emotional aspects. It is a bit more difficult when dealing with little ones tho. They cant always tell you when something is bothering them so you have to rely on your knowledge, observation and gut instinct. As a rule anyone with any type of respiratory issues will have certain triggers whether it air quality, scented candles, animals etc. His vitamin supplement should probably be changed to something geared more toward CF needs. We dont absorb Vitamins A, D, E & K well so there are vitamins for these available. That is something that will probably be mentioned as well as putting your son on some type of enzyme for food digestion. My final thought is to have some type of notebook to write down any question/concerns you have and then right the answers to them as well as anything else you are told. There will be a lot to learn. One other thing........IF they dont offer the genetic testing. Be sure to ask for it and ask for the full panel. OFten insurance carriers & doctors start with the sweat test then move to the smallest genetic panel and only ask for the larger ones after getting answers from the previous and less expensive testing. Good Luck and Keep Coming Back with questions and updates!
 
J

JazzysMom

New member
OK......the sweat tests use to be the only test available and it served the purpose. Now that genetic testing is available and gives a more accurate picture and Most of us consider the sweat test as a tool in the diagosing process and not the sole indicator. Your sons symptoms are classic of CF and no known family history is very common. We have a few people on the forum that have had low or borderline sweat tests results only to confirm CF thru genetic testing. As far as your home......it really depends on the CFer. Many of us have allergies and asmtha in addition to the CF which of course could become an issue swith animals, carpets etc. Some people are willing to deal with the negative physical aspects of animals etc in order to have the positive mental/emotional aspects. It is a bit more difficult when dealing with little ones tho. They cant always tell you when something is bothering them so you have to rely on your knowledge, observation and gut instinct. As a rule anyone with any type of respiratory issues will have certain triggers whether it air quality, scented candles, animals etc. His vitamin supplement should probably be changed to something geared more toward CF needs. We dont absorb Vitamins A, D, E & K well so there are vitamins for these available. That is something that will probably be mentioned as well as putting your son on some type of enzyme for food digestion. My final thought is to have some type of notebook to write down any question/concerns you have and then right the answers to them as well as anything else you are told. There will be a lot to learn. One other thing........IF they dont offer the genetic testing. Be sure to ask for it and ask for the full panel. OFten insurance carriers & doctors start with the sweat test then move to the smallest genetic panel and only ask for the larger ones after getting answers from the previous and less expensive testing. Good Luck and Keep Coming Back with questions and updates!
 
J

JazzysMom

New member
OK......the sweat tests use to be the only test available and it served the purpose. Now that genetic testing is available and gives a more accurate picture and Most of us consider the sweat test as a tool in the diagosing process and not the sole indicator. Your sons symptoms are classic of CF and no known family history is very common. We have a few people on the forum that have had low or borderline sweat tests results only to confirm CF thru genetic testing. As far as your home......it really depends on the CFer. Many of us have allergies and asmtha in addition to the CF which of course could become an issue swith animals, carpets etc. Some people are willing to deal with the negative physical aspects of animals etc in order to have the positive mental/emotional aspects. It is a bit more difficult when dealing with little ones tho. They cant always tell you when something is bothering them so you have to rely on your knowledge, observation and gut instinct. As a rule anyone with any type of respiratory issues will have certain triggers whether it air quality, scented candles, animals etc. His vitamin supplement should probably be changed to something geared more toward CF needs. We dont absorb Vitamins A, D, E & K well so there are vitamins for these available. That is something that will probably be mentioned as well as putting your son on some type of enzyme for food digestion. My final thought is to have some type of notebook to write down any question/concerns you have and then right the answers to them as well as anything else you are told. There will be a lot to learn. One other thing........IF they dont offer the genetic testing. Be sure to ask for it and ask for the full panel. OFten insurance carriers & doctors start with the sweat test then move to the smallest genetic panel and only ask for the larger ones after getting answers from the previous and less expensive testing. Good Luck and Keep Coming Back with questions and updates!
 
M

Mommafirst

Guest
Hi and welcome!! I agree with everything Melissa said. I'll add that my daughter had 2 borderline sweats as well (45 and 53), and was confirmed CF through genetics. Having had the borderline sweats I've met a lot of people online going through diagnosis, and for the most part the borderlines eventually become diagnoses. I have a few online friends who had low borderline/high normal sweats and were told "no CF" but none of them feel they have really been given an all-clear, just that they are waiting, for what I don't know, to come back to the possibility. Considering all your son's very typical symptoms and the borderline sweats, I would guess that you are heading to a diagnosis. I'm sorry!! I really know how tough and painful it is, but without question he will get better treatment once diagnosed and you should notice some big differences. <br>
<br>
I know this isn't the place you every imagined you'd be, none of us did, but you will find amazing people on this journey. Big hugs for you in this difficult time!!
 
M

Mommafirst

Guest
Hi and welcome!! I agree with everything Melissa said. I'll add that my daughter had 2 borderline sweats as well (45 and 53), and was confirmed CF through genetics. Having had the borderline sweats I've met a lot of people online going through diagnosis, and for the most part the borderlines eventually become diagnoses. I have a few online friends who had low borderline/high normal sweats and were told "no CF" but none of them feel they have really been given an all-clear, just that they are waiting, for what I don't know, to come back to the possibility. Considering all your son's very typical symptoms and the borderline sweats, I would guess that you are heading to a diagnosis. I'm sorry!! I really know how tough and painful it is, but without question he will get better treatment once diagnosed and you should notice some big differences. <br>
<br>
I know this isn't the place you every imagined you'd be, none of us did, but you will find amazing people on this journey. Big hugs for you in this difficult time!!
 
M

Mommafirst

Guest
Hi and welcome!! I agree with everything Melissa said. I'll add that my daughter had 2 borderline sweats as well (45 and 53), and was confirmed CF through genetics. Having had the borderline sweats I've met a lot of people online going through diagnosis, and for the most part the borderlines eventually become diagnoses. I have a few online friends who had low borderline/high normal sweats and were told "no CF" but none of them feel they have really been given an all-clear, just that they are waiting, for what I don't know, to come back to the possibility. Considering all your son's very typical symptoms and the borderline sweats, I would guess that you are heading to a diagnosis. I'm sorry!! I really know how tough and painful it is, but without question he will get better treatment once diagnosed and you should notice some big differences. <br>
<br>
I know this isn't the place you every imagined you'd be, none of us did, but you will find amazing people on this journey. Big hugs for you in this difficult time!!
 
A

Alyssa

New member
Unfortunately I have to add to the list on the side of "borderline results + CF symptoms usually = CF"

See my blog for full details (link is in my signature line)

Yes keep your dog ! Unless you have reason to believe your son is allergic to dogs -- but I wouldn't give up a family pet just because you have a CF diagnosis. Carpet has a far less emotional attachment.... but also probably not necessary to give up :) Linins..... na, nothing special. Air purifier... sure, if you can afford it they are nice to have -- our research led us to buy a very good HEPA filter system... a big one (filters alone are $250) but it's big enough to do the whole house. Our daughter likes it and keeps it in her room. But it's not something you have to rush right out and get.... things like this you can take your time with, you will have far more pressing CF related treatments to get a handle on first. It can be a little overwhelming at first, but it will get easier.

Hang in there and keep us posted.
 
A

Alyssa

New member
Unfortunately I have to add to the list on the side of "borderline results + CF symptoms usually = CF"

See my blog for full details (link is in my signature line)

Yes keep your dog ! Unless you have reason to believe your son is allergic to dogs -- but I wouldn't give up a family pet just because you have a CF diagnosis. Carpet has a far less emotional attachment.... but also probably not necessary to give up :) Linins..... na, nothing special. Air purifier... sure, if you can afford it they are nice to have -- our research led us to buy a very good HEPA filter system... a big one (filters alone are $250) but it's big enough to do the whole house. Our daughter likes it and keeps it in her room. But it's not something you have to rush right out and get.... things like this you can take your time with, you will have far more pressing CF related treatments to get a handle on first. It can be a little overwhelming at first, but it will get easier.

Hang in there and keep us posted.
 
A

Alyssa

New member
Unfortunately I have to add to the list on the side of "borderline results + CF symptoms usually = CF"

See my blog for full details (link is in my signature line)

Yes keep your dog ! Unless you have reason to believe your son is allergic to dogs -- but I wouldn't give up a family pet just because you have a CF diagnosis. Carpet has a far less emotional attachment.... but also probably not necessary to give up :) Linins..... na, nothing special. Air purifier... sure, if you can afford it they are nice to have -- our research led us to buy a very good HEPA filter system... a big one (filters alone are $250) but it's big enough to do the whole house. Our daughter likes it and keeps it in her room. But it's not something you have to rush right out and get.... things like this you can take your time with, you will have far more pressing CF related treatments to get a handle on first. It can be a little overwhelming at first, but it will get easier.

Hang in there and keep us posted.
 
C

clawson5104

New member
I REALLY appreciate everybody's advice, and opinions. my son had his test drawn yesterday for the full panel. I also met with CF nurse, his pulmonologist, nutritionist, and respiratory therapist yesterday. so we are off to a good start i suppose. thank u for your prayers, and keep them going. some family is doing okay, others not so good, even though we do not know 100% yet. i will post anything new when i learn it. and i have no doubt i will ask questions in the meantime....lol. it is nice to know there are people to help in this situation, with experience. thanks so much for making me feel welcome.
 
C

clawson5104

New member
I REALLY appreciate everybody's advice, and opinions. my son had his test drawn yesterday for the full panel. I also met with CF nurse, his pulmonologist, nutritionist, and respiratory therapist yesterday. so we are off to a good start i suppose. thank u for your prayers, and keep them going. some family is doing okay, others not so good, even though we do not know 100% yet. i will post anything new when i learn it. and i have no doubt i will ask questions in the meantime....lol. it is nice to know there are people to help in this situation, with experience. thanks so much for making me feel welcome.
 
C

clawson5104

New member
I REALLY appreciate everybody's advice, and opinions. my son had his test drawn yesterday for the full panel. I also met with CF nurse, his pulmonologist, nutritionist, and respiratory therapist yesterday. so we are off to a good start i suppose. thank u for your prayers, and keep them going. some family is doing okay, others not so good, even though we do not know 100% yet. i will post anything new when i learn it. and i have no doubt i will ask questions in the meantime....lol. it is nice to know there are people to help in this situation, with experience. thanks so much for making me feel welcome.
 
M

maxjor

New member
My daugther came back at her new born sc teat and went to mgh and did the sweat test and mgh sent a letter her dr that she needed more testing and he never told us so she went 3 yrs with knowng than th dr that took over the cf center call and asked why we did not come back and i told him we never know that thay sent a letter to her dr ......so in the end we had the genetic test done and now she has had f for 4 years now and doind well...i just what i saying do not put it off you need to know yes or no....good luck and please let me know how his test come out ...


mom of 2 one 7 w\cf and one wo\cf
 
M

maxjor

New member
My daugther came back at her new born sc teat and went to mgh and did the sweat test and mgh sent a letter her dr that she needed more testing and he never told us so she went 3 yrs with knowng than th dr that took over the cf center call and asked why we did not come back and i told him we never know that thay sent a letter to her dr ......so in the end we had the genetic test done and now she has had f for 4 years now and doind well...i just what i saying do not put it off you need to know yes or no....good luck and please let me know how his test come out ...


mom of 2 one 7 w\cf and one wo\cf
 
M

maxjor

New member
My daugther came back at her new born sc teat and went to mgh and did the sweat test and mgh sent a letter her dr that she needed more testing and he never told us so she went 3 yrs with knowng than th dr that took over the cf center call and asked why we did not come back and i told him we never know that thay sent a letter to her dr ......so in the end we had the genetic test done and now she has had f for 4 years now and doind well...i just what i saying do not put it off you need to know yes or no....good luck and please let me know how his test come out ...


mom of 2 one 7 w\cf and one wo\cf
 
C

clawson5104

New member
well, my son's pulmonologist called a few days ago.....

his throat culture came back with thrush.....
his stool culture came back within normal limits....

i was thinking this is a good thing. but then she said, the stool tests will be continuous for a while. just because this one was okay does not mean the next will. glad she is being thorough, but, was liking the good news for a change.

still haven't received results on genetic testing. only been 12 days,,,,,seems like a year. keep on praying for us.....thanks again
 
C

clawson5104

New member
well, my son's pulmonologist called a few days ago.....

his throat culture came back with thrush.....
his stool culture came back within normal limits....

i was thinking this is a good thing. but then she said, the stool tests will be continuous for a while. just because this one was okay does not mean the next will. glad she is being thorough, but, was liking the good news for a change.

still haven't received results on genetic testing. only been 12 days,,,,,seems like a year. keep on praying for us.....thanks again
 
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