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L

lkc77

New member
Hi!
I have a daughter that will be 1 next Friday, Dec. 15th. She was born SGA/IUGR at 39 weeks weighing 4 lbs. 13 oz. and was 17 3/4". Currently, she is 12 lbs. 11 oz. and 25 3/4". She has been diagnosed as Failure to Thrive with developmental delays. She can sit and roll, but still can not lift her head up off the floor when she is lying on her stomach. This is holding her back from crawling.
She has seen a neurologist and endocrinologist. She saw a geneticist this week. He is doing a microchip chromosome study and he wants her to have the sweat test done next week for CF. Could anyone tell me what some of the symptoms of CF are and what the sweat test involves? It seems like some of them come back inconclusive. Why does this happen? Does her story sound like any of yours?
Any information and advice would be appreciated!!
Thank You!
Lisa
 
L

lkc77

New member
Hi!
I have a daughter that will be 1 next Friday, Dec. 15th. She was born SGA/IUGR at 39 weeks weighing 4 lbs. 13 oz. and was 17 3/4". Currently, she is 12 lbs. 11 oz. and 25 3/4". She has been diagnosed as Failure to Thrive with developmental delays. She can sit and roll, but still can not lift her head up off the floor when she is lying on her stomach. This is holding her back from crawling.
She has seen a neurologist and endocrinologist. She saw a geneticist this week. He is doing a microchip chromosome study and he wants her to have the sweat test done next week for CF. Could anyone tell me what some of the symptoms of CF are and what the sweat test involves? It seems like some of them come back inconclusive. Why does this happen? Does her story sound like any of yours?
Any information and advice would be appreciated!!
Thank You!
Lisa
 
L

lkc77

New member
Hi!
I have a daughter that will be 1 next Friday, Dec. 15th. She was born SGA/IUGR at 39 weeks weighing 4 lbs. 13 oz. and was 17 3/4". Currently, she is 12 lbs. 11 oz. and 25 3/4". She has been diagnosed as Failure to Thrive with developmental delays. She can sit and roll, but still can not lift her head up off the floor when she is lying on her stomach. This is holding her back from crawling.
She has seen a neurologist and endocrinologist. She saw a geneticist this week. He is doing a microchip chromosome study and he wants her to have the sweat test done next week for CF. Could anyone tell me what some of the symptoms of CF are and what the sweat test involves? It seems like some of them come back inconclusive. Why does this happen? Does her story sound like any of yours?
Any information and advice would be appreciated!!
Thank You!
Lisa
 
2

2005CFmom

Super Moderator
Hi Lisa. I don't know how much help I'll be, but I'll do my best. I have not heard of SGA/IUGR being associated with CF. More commonly CF babies are born at normal size. Failure to Thrive is very common in CF babies.....so maybe that is why the geneticist wants to test for CF (hopefully to rule it out).

This is how they did the sweat test for my daughter (she was 8 at the time, so I don't know if the process is different for infants). They attached a couple of electrods (?) to her arm and ran pulses through them for a few minutes...she said it did NOT hurt...they put a swab on her arm and wrapped it up. After about 30 minutes they collected the swab that had soaked up the sweat. All in all it was a simple/painless procedure and we were called the next day with the results.

There are 2 main reasons that I'm aware of why sweat tests come back inconclusive. #1...They are unable to obtain enough sweat to complete the test. #2...Sweat Chloride numbers over 60 are considered positive for CF, but numbers between 40 & 60 are borderline. And to muddy the water even more, although technically numbers less than 40 are considered negative, there are many people that test negative on the sweat test that later test positive on the genetic test.

As far as the symptoms go, there are/can be symptoms in both the respiratory and GI symptoms (and not all show up at birth, some can develop later...and not everyone has both resp. & GI symptoms).

Obviously Failure to Thrive is one symptom, intestinal blockages; frequent loose, foul smelling stools. My daughter ate like a horse, but always remained petite...but did not drop off the growth charts. She was not diagnosed until she started having a chronic cough.

So some of the respiratory symptoms would be, chronic cough; frequent lung infections and lung congestion.

I'm sure there are more things, but that is all I can think of off the top of my head.

Hopefully you will you be able to get a diagnosis for your daughter soon so she can be treated properly. Let us know if you have anymore questions....and let us know how the sweat tests come out.
 
2

2005CFmom

Super Moderator
Hi Lisa. I don't know how much help I'll be, but I'll do my best. I have not heard of SGA/IUGR being associated with CF. More commonly CF babies are born at normal size. Failure to Thrive is very common in CF babies.....so maybe that is why the geneticist wants to test for CF (hopefully to rule it out).

This is how they did the sweat test for my daughter (she was 8 at the time, so I don't know if the process is different for infants). They attached a couple of electrods (?) to her arm and ran pulses through them for a few minutes...she said it did NOT hurt...they put a swab on her arm and wrapped it up. After about 30 minutes they collected the swab that had soaked up the sweat. All in all it was a simple/painless procedure and we were called the next day with the results.

There are 2 main reasons that I'm aware of why sweat tests come back inconclusive. #1...They are unable to obtain enough sweat to complete the test. #2...Sweat Chloride numbers over 60 are considered positive for CF, but numbers between 40 & 60 are borderline. And to muddy the water even more, although technically numbers less than 40 are considered negative, there are many people that test negative on the sweat test that later test positive on the genetic test.

As far as the symptoms go, there are/can be symptoms in both the respiratory and GI symptoms (and not all show up at birth, some can develop later...and not everyone has both resp. & GI symptoms).

Obviously Failure to Thrive is one symptom, intestinal blockages; frequent loose, foul smelling stools. My daughter ate like a horse, but always remained petite...but did not drop off the growth charts. She was not diagnosed until she started having a chronic cough.

So some of the respiratory symptoms would be, chronic cough; frequent lung infections and lung congestion.

I'm sure there are more things, but that is all I can think of off the top of my head.

Hopefully you will you be able to get a diagnosis for your daughter soon so she can be treated properly. Let us know if you have anymore questions....and let us know how the sweat tests come out.
 
2

2005CFmom

Super Moderator
Hi Lisa. I don't know how much help I'll be, but I'll do my best. I have not heard of SGA/IUGR being associated with CF. More commonly CF babies are born at normal size. Failure to Thrive is very common in CF babies.....so maybe that is why the geneticist wants to test for CF (hopefully to rule it out).

This is how they did the sweat test for my daughter (she was 8 at the time, so I don't know if the process is different for infants). They attached a couple of electrods (?) to her arm and ran pulses through them for a few minutes...she said it did NOT hurt...they put a swab on her arm and wrapped it up. After about 30 minutes they collected the swab that had soaked up the sweat. All in all it was a simple/painless procedure and we were called the next day with the results.

There are 2 main reasons that I'm aware of why sweat tests come back inconclusive. #1...They are unable to obtain enough sweat to complete the test. #2...Sweat Chloride numbers over 60 are considered positive for CF, but numbers between 40 & 60 are borderline. And to muddy the water even more, although technically numbers less than 40 are considered negative, there are many people that test negative on the sweat test that later test positive on the genetic test.

As far as the symptoms go, there are/can be symptoms in both the respiratory and GI symptoms (and not all show up at birth, some can develop later...and not everyone has both resp. & GI symptoms).

Obviously Failure to Thrive is one symptom, intestinal blockages; frequent loose, foul smelling stools. My daughter ate like a horse, but always remained petite...but did not drop off the growth charts. She was not diagnosed until she started having a chronic cough.

So some of the respiratory symptoms would be, chronic cough; frequent lung infections and lung congestion.

I'm sure there are more things, but that is all I can think of off the top of my head.

Hopefully you will you be able to get a diagnosis for your daughter soon so she can be treated properly. Let us know if you have anymore questions....and let us know how the sweat tests come out.
 
L

lkc77

New member
Teri,

Thank you so much for this information!! I do think the geneticist wants to do the test to rule CF out. No one can seem to give us a reason as to why she is small and delayed. I guess at this point it is just trying to rule stuff out.

I don't think she has too many of the symptoms. Failure to thrive is the biggest one, but she does seem to struggle with colds and congestion alot. She has had four ear infections. Instead of the loose stools, she actually struggles with constipation though.

Her sweat test is scheduled for this Thursday at 9:00. I am hoping that it is not inconclusive!

Thanks again for the help and advice!
Lisa
 
L

lkc77

New member
Teri,

Thank you so much for this information!! I do think the geneticist wants to do the test to rule CF out. No one can seem to give us a reason as to why she is small and delayed. I guess at this point it is just trying to rule stuff out.

I don't think she has too many of the symptoms. Failure to thrive is the biggest one, but she does seem to struggle with colds and congestion alot. She has had four ear infections. Instead of the loose stools, she actually struggles with constipation though.

Her sweat test is scheduled for this Thursday at 9:00. I am hoping that it is not inconclusive!

Thanks again for the help and advice!
Lisa
 
L

lkc77

New member
Teri,

Thank you so much for this information!! I do think the geneticist wants to do the test to rule CF out. No one can seem to give us a reason as to why she is small and delayed. I guess at this point it is just trying to rule stuff out.

I don't think she has too many of the symptoms. Failure to thrive is the biggest one, but she does seem to struggle with colds and congestion alot. She has had four ear infections. Instead of the loose stools, she actually struggles with constipation though.

Her sweat test is scheduled for this Thursday at 9:00. I am hoping that it is not inconclusive!

Thanks again for the help and advice!
Lisa
 
M

Mommafirst

Guest
Best of luck, Lisa. The sweat test is a very simple thing and hopefully you'll get some answers. My daughter was diagnosed at 5 months and is just shy of 11 months now. She is only now starting to fall on the growth charts and has had very few symptoms at all other than a meconium plug (intestinal blockage) at birth.

I'm no doctor and Cf certainly appears in many different ways, but from what you are saying I am hopeful that your daughter does not have CF.
 
M

Mommafirst

Guest
Best of luck, Lisa. The sweat test is a very simple thing and hopefully you'll get some answers. My daughter was diagnosed at 5 months and is just shy of 11 months now. She is only now starting to fall on the growth charts and has had very few symptoms at all other than a meconium plug (intestinal blockage) at birth.

I'm no doctor and Cf certainly appears in many different ways, but from what you are saying I am hopeful that your daughter does not have CF.
 
M

Mommafirst

Guest
Best of luck, Lisa. The sweat test is a very simple thing and hopefully you'll get some answers. My daughter was diagnosed at 5 months and is just shy of 11 months now. She is only now starting to fall on the growth charts and has had very few symptoms at all other than a meconium plug (intestinal blockage) at birth.

I'm no doctor and Cf certainly appears in many different ways, but from what you are saying I am hopeful that your daughter does not have CF.
 
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