3 mo. old - Borderline sweat test

MomOfMiles · Oct 30, 2008

Hello! I am new to this community today after receiving a "borderline" sweat test result for my 14 week old son, Miles.

He was admitted to the hospital on Monday of this week for failure to thrive. He only gained 3 oz. in a month. He is exclusively breastfed. They ran all kinds of tests in the hospital and can't find a good explanation for his very slow weight gain.

His newborn screening was negative and he hasn't had classic symptoms, except for the low weight and some coughing (not much coughing, but enough that I have noticed). His sweat test came back as a 42. Instead of repeating the sweat test, they took a blood sample and sent it off. So now we wait...

I guess I don't really know what the borderline result means. The way I first understood it, we have 3 possibilities at this time: 1 - No CF, not a carrier, 2 - Just a carrier, 3 - CF. But now I'm reading all of your posts about atypical CF and whatnot...

I'm hurriedly reading as much as I can and trying to figure out what this could mean. As far as I know, there is no history of CF in either of our families, but I'll be reading the genealogical info that I do have. How far back do I need to look?

I feel like no one we are working with so far really knows what they're doing...We're moving (in 2 days! perfect timing for all of this, huh?) to a city with a CF center, so I'm hopeful that if needed, we'll be in good hands.

Thanks for any advice or thoughts you have!

MomOfMiles · Oct 30, 2008

Hello! I am new to this community today after receiving a "borderline" sweat test result for my 14 week old son, Miles.

He was admitted to the hospital on Monday of this week for failure to thrive. He only gained 3 oz. in a month. He is exclusively breastfed. They ran all kinds of tests in the hospital and can't find a good explanation for his very slow weight gain.

His newborn screening was negative and he hasn't had classic symptoms, except for the low weight and some coughing (not much coughing, but enough that I have noticed). His sweat test came back as a 42. Instead of repeating the sweat test, they took a blood sample and sent it off. So now we wait...

I guess I don't really know what the borderline result means. The way I first understood it, we have 3 possibilities at this time: 1 - No CF, not a carrier, 2 - Just a carrier, 3 - CF. But now I'm reading all of your posts about atypical CF and whatnot...

I'm hurriedly reading as much as I can and trying to figure out what this could mean. As far as I know, there is no history of CF in either of our families, but I'll be reading the genealogical info that I do have. How far back do I need to look?

I feel like no one we are working with so far really knows what they're doing...We're moving (in 2 days! perfect timing for all of this, huh?) to a city with a CF center, so I'm hopeful that if needed, we'll be in good hands.

Thanks for any advice or thoughts you have!

MomOfMiles · Oct 30, 2008

Hello! I am new to this community today after receiving a "borderline" sweat test result for my 14 week old son, Miles.

He was admitted to the hospital on Monday of this week for failure to thrive. He only gained 3 oz. in a month. He is exclusively breastfed. They ran all kinds of tests in the hospital and can't find a good explanation for his very slow weight gain.

His newborn screening was negative and he hasn't had classic symptoms, except for the low weight and some coughing (not much coughing, but enough that I have noticed). His sweat test came back as a 42. Instead of repeating the sweat test, they took a blood sample and sent it off. So now we wait...

I guess I don't really know what the borderline result means. The way I first understood it, we have 3 possibilities at this time: 1 - No CF, not a carrier, 2 - Just a carrier, 3 - CF. But now I'm reading all of your posts about atypical CF and whatnot...

I'm hurriedly reading as much as I can and trying to figure out what this could mean. As far as I know, there is no history of CF in either of our families, but I'll be reading the genealogical info that I do have. How far back do I need to look?

I feel like no one we are working with so far really knows what they're doing...We're moving (in 2 days! perfect timing for all of this, huh?) to a city with a CF center, so I'm hopeful that if needed, we'll be in good hands.

Thanks for any advice or thoughts you have!

MomOfMiles · Oct 30, 2008

Hello! I am new to this community today after receiving a "borderline" sweat test result for my 14 week old son, Miles.

He was admitted to the hospital on Monday of this week for failure to thrive. He only gained 3 oz. in a month. He is exclusively breastfed. They ran all kinds of tests in the hospital and can't find a good explanation for his very slow weight gain.

His newborn screening was negative and he hasn't had classic symptoms, except for the low weight and some coughing (not much coughing, but enough that I have noticed). His sweat test came back as a 42. Instead of repeating the sweat test, they took a blood sample and sent it off. So now we wait...

I guess I don't really know what the borderline result means. The way I first understood it, we have 3 possibilities at this time: 1 - No CF, not a carrier, 2 - Just a carrier, 3 - CF. But now I'm reading all of your posts about atypical CF and whatnot...

I'm hurriedly reading as much as I can and trying to figure out what this could mean. As far as I know, there is no history of CF in either of our families, but I'll be reading the genealogical info that I do have. How far back do I need to look?

I feel like no one we are working with so far really knows what they're doing...We're moving (in 2 days! perfect timing for all of this, huh?) to a city with a CF center, so I'm hopeful that if needed, we'll be in good hands.

Thanks for any advice or thoughts you have!

MomOfMiles · Oct 30, 2008

Hello! I am new to this community today after receiving a "borderline" sweat test result for my 14 week old son, Miles.
 
 He was admitted to the hospital on Monday of this week for failure to thrive. He only gained 3 oz. in a month. He is exclusively breastfed. They ran all kinds of tests in the hospital and can't find a good explanation for his very slow weight gain.
 
 His newborn screening was negative and he hasn't had classic symptoms, except for the low weight and some coughing (not much coughing, but enough that I have noticed). His sweat test came back as a 42. Instead of repeating the sweat test, they took a blood sample and sent it off. So now we wait...
 
 I guess I don't really know what the borderline result means. The way I first understood it, we have 3 possibilities at this time: 1 - No CF, not a carrier, 2 - Just a carrier, 3 - CF. But now I'm reading all of your posts about atypical CF and whatnot...
 
 I'm hurriedly reading as much as I can and trying to figure out what this could mean. As far as I know, there is no history of CF in either of our families, but I'll be reading the genealogical info that I do have. How far back do I need to look?
 
 I feel like no one we are working with so far really knows what they're doing...We're moving (in 2 days! perfect timing for all of this, huh?) to a city with a CF center, so I'm hopeful that if needed, we'll be in good hands.
 
 Thanks for any advice or thoughts you have!

JazzysMom · Oct 30, 2008

I know its ironic that I about to say this, BUT you should feel great that you have a doctor pursuing it even if your son doesnt show classic symptoms. We have a few members who had low or borderlin sweat tests that got a diagnosis after the genetic testing was done.

As to family history.....I wouldnt knock yourself out because a large portion of CF diagnosis' have no known family history.

Do you know if the full genetic panel was requested on the bloodwork? There are over 1500 mutations to test for.

I am sure its difficult for your to sit & wait, but I am glad you are doing some research in the meantime & that you will be moving to an area that has a CF Center.

For now (until you confirm otherwise) welcome to our family!

JazzysMom · Oct 30, 2008

I know its ironic that I about to say this, BUT you should feel great that you have a doctor pursuing it even if your son doesnt show classic symptoms. We have a few members who had low or borderlin sweat tests that got a diagnosis after the genetic testing was done.

As to family history.....I wouldnt knock yourself out because a large portion of CF diagnosis' have no known family history.

Do you know if the full genetic panel was requested on the bloodwork? There are over 1500 mutations to test for.

I am sure its difficult for your to sit & wait, but I am glad you are doing some research in the meantime & that you will be moving to an area that has a CF Center.

For now (until you confirm otherwise) welcome to our family!

JazzysMom · Oct 30, 2008

I know its ironic that I about to say this, BUT you should feel great that you have a doctor pursuing it even if your son doesnt show classic symptoms. We have a few members who had low or borderlin sweat tests that got a diagnosis after the genetic testing was done.

As to family history.....I wouldnt knock yourself out because a large portion of CF diagnosis' have no known family history.

Do you know if the full genetic panel was requested on the bloodwork? There are over 1500 mutations to test for.

I am sure its difficult for your to sit & wait, but I am glad you are doing some research in the meantime & that you will be moving to an area that has a CF Center.

For now (until you confirm otherwise) welcome to our family!

JazzysMom · Oct 30, 2008

I know its ironic that I about to say this, BUT you should feel great that you have a doctor pursuing it even if your son doesnt show classic symptoms. We have a few members who had low or borderlin sweat tests that got a diagnosis after the genetic testing was done.

As to family history.....I wouldnt knock yourself out because a large portion of CF diagnosis' have no known family history.

Do you know if the full genetic panel was requested on the bloodwork? There are over 1500 mutations to test for.

I am sure its difficult for your to sit & wait, but I am glad you are doing some research in the meantime & that you will be moving to an area that has a CF Center.

For now (until you confirm otherwise) welcome to our family!

JazzysMom · Oct 30, 2008

I know its ironic that I about to say this, BUT you should feel great that you have a doctor pursuing it even if your son doesnt show classic symptoms. We have a few members who had low or borderlin sweat tests that got a diagnosis after the genetic testing was done.
 
 As to family history.....I wouldnt knock yourself out because a large portion of CF diagnosis' have no known family history.
 
 Do you know if the full genetic panel was requested on the bloodwork? There are over 1500 mutations to test for.
 
 I am sure its difficult for your to sit & wait, but I am glad you are doing some research in the meantime & that you will be moving to an area that has a CF Center.
 
 For now (until you confirm otherwise) welcome to our family!

Stacia · Oct 31, 2008

Boy do you sound just like us. Stacia was born three months early with a bowel obstruction. Of course the first thing they thought of was CF. We had three sweat tests that all came up borderline. We were let go about this for nine years. Stacia then started with digestive problems and weighed only fifty pounds at the age of almost ten. We never thought anything about CF, but brought the tummy problems to our asthma dr. and she made an apt. with the gastro. dr. We then had three more sweat test done within three weeks. The first two were borderline again and the last one was positive. The then went straight to the blood test. Like others said make sure the test for all mutations. We did Ambry genetics test. It is the best. I know it stinks having to wait, it was the longest six weeks of our lives.

and yes Stacia is considered Atypical. She doesn't have really any lung problems so we are very lucky. We just hope it always stays that way. Plus there is no CF in our family either.

You are in a great place on here. Everyone on here is the greatest. They are the ones that have gotten me through everything, cause I like you are new to all of this. We will all help you. Sorry so long

Stacia · Oct 31, 2008

Boy do you sound just like us. Stacia was born three months early with a bowel obstruction. Of course the first thing they thought of was CF. We had three sweat tests that all came up borderline. We were let go about this for nine years. Stacia then started with digestive problems and weighed only fifty pounds at the age of almost ten. We never thought anything about CF, but brought the tummy problems to our asthma dr. and she made an apt. with the gastro. dr. We then had three more sweat test done within three weeks. The first two were borderline again and the last one was positive. The then went straight to the blood test. Like others said make sure the test for all mutations. We did Ambry genetics test. It is the best. I know it stinks having to wait, it was the longest six weeks of our lives.

and yes Stacia is considered Atypical. She doesn't have really any lung problems so we are very lucky. We just hope it always stays that way. Plus there is no CF in our family either.

You are in a great place on here. Everyone on here is the greatest. They are the ones that have gotten me through everything, cause I like you are new to all of this. We will all help you. Sorry so long

Stacia · Oct 31, 2008

Boy do you sound just like us. Stacia was born three months early with a bowel obstruction. Of course the first thing they thought of was CF. We had three sweat tests that all came up borderline. We were let go about this for nine years. Stacia then started with digestive problems and weighed only fifty pounds at the age of almost ten. We never thought anything about CF, but brought the tummy problems to our asthma dr. and she made an apt. with the gastro. dr. We then had three more sweat test done within three weeks. The first two were borderline again and the last one was positive. The then went straight to the blood test. Like others said make sure the test for all mutations. We did Ambry genetics test. It is the best. I know it stinks having to wait, it was the longest six weeks of our lives.

and yes Stacia is considered Atypical. She doesn't have really any lung problems so we are very lucky. We just hope it always stays that way. Plus there is no CF in our family either.

You are in a great place on here. Everyone on here is the greatest. They are the ones that have gotten me through everything, cause I like you are new to all of this. We will all help you. Sorry so long

Stacia · Oct 31, 2008

Boy do you sound just like us. Stacia was born three months early with a bowel obstruction. Of course the first thing they thought of was CF. We had three sweat tests that all came up borderline. We were let go about this for nine years. Stacia then started with digestive problems and weighed only fifty pounds at the age of almost ten. We never thought anything about CF, but brought the tummy problems to our asthma dr. and she made an apt. with the gastro. dr. We then had three more sweat test done within three weeks. The first two were borderline again and the last one was positive. The then went straight to the blood test. Like others said make sure the test for all mutations. We did Ambry genetics test. It is the best. I know it stinks having to wait, it was the longest six weeks of our lives.

and yes Stacia is considered Atypical. She doesn't have really any lung problems so we are very lucky. We just hope it always stays that way. Plus there is no CF in our family either.

You are in a great place on here. Everyone on here is the greatest. They are the ones that have gotten me through everything, cause I like you are new to all of this. We will all help you. Sorry so long

Stacia · Oct 31, 2008

Boy do you sound just like us. Stacia was born three months early with a bowel obstruction. Of course the first thing they thought of was CF. We had three sweat tests that all came up borderline. We were let go about this for nine years. Stacia then started with digestive problems and weighed only fifty pounds at the age of almost ten. We never thought anything about CF, but brought the tummy problems to our asthma dr. and she made an apt. with the gastro. dr. We then had three more sweat test done within three weeks. The first two were borderline again and the last one was positive. The then went straight to the blood test. Like others said make sure the test for all mutations. We did Ambry genetics test. It is the best. I know it stinks having to wait, it was the longest six weeks of our lives.
 
 and yes Stacia is considered Atypical. She doesn't have really any lung problems so we are very lucky. We just hope it always stays that way. Plus there is no CF in our family either.
 
 You are in a great place on here. Everyone on here is the greatest. They are the ones that have gotten me through everything, cause I like you are new to all of this. We will all help you. Sorry so long

Alyssa · Oct 31, 2008

Welcome to the site.

I know waiting is hard, but like someone else already said, that's good that they went straight for the genetic testing, hopefully it was not just a screening of less than 100 genes - that's usually what they like to do first. It can take a pretty persistent mom to get them to keep going with the more extensive testing.

My kids both test out low on the sweat tests (38 & 42), but we did find two CF genes in them both. You can read more details about them on my blog page - the link is in my signature line below.

Again, like the other posters have said - searching back in your family history doesn't really mean anything... except for when it is prevalent in the family tree. People who are carriers are symptom free, so if your child does have CF, it is because both you and your husband are each a carrier (have one CF gene) and your child got one CF gene from each of you - giving him a total of 2 CF genes. It doesn't really matter if relatives don't have CF, it happens because you too came together and both gave off your one (carrier) CF gene to the child. Does that make sense?

Good luck with your move!

Alyssa · Oct 31, 2008

Welcome to the site.

I know waiting is hard, but like someone else already said, that's good that they went straight for the genetic testing, hopefully it was not just a screening of less than 100 genes - that's usually what they like to do first. It can take a pretty persistent mom to get them to keep going with the more extensive testing.

My kids both test out low on the sweat tests (38 & 42), but we did find two CF genes in them both. You can read more details about them on my blog page - the link is in my signature line below.

Again, like the other posters have said - searching back in your family history doesn't really mean anything... except for when it is prevalent in the family tree. People who are carriers are symptom free, so if your child does have CF, it is because both you and your husband are each a carrier (have one CF gene) and your child got one CF gene from each of you - giving him a total of 2 CF genes. It doesn't really matter if relatives don't have CF, it happens because you too came together and both gave off your one (carrier) CF gene to the child. Does that make sense?

Good luck with your move!

Alyssa · Oct 31, 2008

Welcome to the site.

I know waiting is hard, but like someone else already said, that's good that they went straight for the genetic testing, hopefully it was not just a screening of less than 100 genes - that's usually what they like to do first. It can take a pretty persistent mom to get them to keep going with the more extensive testing.

My kids both test out low on the sweat tests (38 & 42), but we did find two CF genes in them both. You can read more details about them on my blog page - the link is in my signature line below.

Again, like the other posters have said - searching back in your family history doesn't really mean anything... except for when it is prevalent in the family tree. People who are carriers are symptom free, so if your child does have CF, it is because both you and your husband are each a carrier (have one CF gene) and your child got one CF gene from each of you - giving him a total of 2 CF genes. It doesn't really matter if relatives don't have CF, it happens because you too came together and both gave off your one (carrier) CF gene to the child. Does that make sense?

Good luck with your move!

Alyssa · Oct 31, 2008

Welcome to the site.

I know waiting is hard, but like someone else already said, that's good that they went straight for the genetic testing, hopefully it was not just a screening of less than 100 genes - that's usually what they like to do first. It can take a pretty persistent mom to get them to keep going with the more extensive testing.

My kids both test out low on the sweat tests (38 & 42), but we did find two CF genes in them both. You can read more details about them on my blog page - the link is in my signature line below.

Again, like the other posters have said - searching back in your family history doesn't really mean anything... except for when it is prevalent in the family tree. People who are carriers are symptom free, so if your child does have CF, it is because both you and your husband are each a carrier (have one CF gene) and your child got one CF gene from each of you - giving him a total of 2 CF genes. It doesn't really matter if relatives don't have CF, it happens because you too came together and both gave off your one (carrier) CF gene to the child. Does that make sense?

Good luck with your move!

Alyssa · Oct 31, 2008

Welcome to the site.
 
 I know waiting is hard, but like someone else already said, that's good that they went straight for the genetic testing, hopefully it was not just a screening of less than 100 genes - that's usually what they like to do first. It can take a pretty persistent mom to get them to keep going with the more extensive testing.
 
 My kids both test out low on the sweat tests (38 & 42), but we did find two CF genes in them both. You can read more details about them on my blog page - the link is in my signature line below.
 
 Again, like the other posters have said - searching back in your family history doesn't really mean anything... except for when it is prevalent in the family tree. People who are carriers are symptom free, so if your child does have CF, it is because both you and your husband are each a carrier (have one CF gene) and your child got one CF gene from each of you - giving him a total of 2 CF genes. It doesn't really matter if relatives don't have CF, it happens because you too came together and both gave off your one (carrier) CF gene to the child. Does that make sense?
 
 Good luck with your move!

3 mo. old - Borderline sweat test

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