My 2yo might have CF. A few questions-RESULTS IN! UPDATED! 1-16-08

mom2Kierstyn

New member
Hi! I am new here. My daughter (Kierstyn) has an appointment next week for the sweat test. Her only sympton for CF is that she is FTT. She was always at the 40% for weight and over the last 9 months, she has dropped completely off of the growth chart. She is 25 months old and weighs 21 pounds. Can this really be CF with the weight problem being the only symptom? She has never really been sick but she does have pneumonia right now. How long does it take for the results of the sweat test? She was also tested for other problems. Most of her bloodwork came back fine except for she needs to consume more calories. They tested her for Celiac's Disease but that result is not back yet. Any info would be awesome! Thank you!

Mindy
 

mom2Kierstyn

New member
Hi! I am new here. My daughter (Kierstyn) has an appointment next week for the sweat test. Her only sympton for CF is that she is FTT. She was always at the 40% for weight and over the last 9 months, she has dropped completely off of the growth chart. She is 25 months old and weighs 21 pounds. Can this really be CF with the weight problem being the only symptom? She has never really been sick but she does have pneumonia right now. How long does it take for the results of the sweat test? She was also tested for other problems. Most of her bloodwork came back fine except for she needs to consume more calories. They tested her for Celiac's Disease but that result is not back yet. Any info would be awesome! Thank you!

Mindy
 

mom2Kierstyn

New member
Hi! I am new here. My daughter (Kierstyn) has an appointment next week for the sweat test. Her only sympton for CF is that she is FTT. She was always at the 40% for weight and over the last 9 months, she has dropped completely off of the growth chart. She is 25 months old and weighs 21 pounds. Can this really be CF with the weight problem being the only symptom? She has never really been sick but she does have pneumonia right now. How long does it take for the results of the sweat test? She was also tested for other problems. Most of her bloodwork came back fine except for she needs to consume more calories. They tested her for Celiac's Disease but that result is not back yet. Any info would be awesome! Thank you!

Mindy
 

mom2Kierstyn

New member
Hi! I am new here. My daughter (Kierstyn) has an appointment next week for the sweat test. Her only sympton for CF is that she is FTT. She was always at the 40% for weight and over the last 9 months, she has dropped completely off of the growth chart. She is 25 months old and weighs 21 pounds. Can this really be CF with the weight problem being the only symptom? She has never really been sick but she does have pneumonia right now. How long does it take for the results of the sweat test? She was also tested for other problems. Most of her bloodwork came back fine except for she needs to consume more calories. They tested her for Celiac's Disease but that result is not back yet. Any info would be awesome! Thank you!

Mindy
 

mom2Kierstyn

New member
Hi! I am new here. My daughter (Kierstyn) has an appointment next week for the sweat test. Her only sympton for CF is that she is FTT. She was always at the 40% for weight and over the last 9 months, she has dropped completely off of the growth chart. She is 25 months old and weighs 21 pounds. Can this really be CF with the weight problem being the only symptom? She has never really been sick but she does have pneumonia right now. How long does it take for the results of the sweat test? She was also tested for other problems. Most of her bloodwork came back fine except for she needs to consume more calories. They tested her for Celiac's Disease but that result is not back yet. Any info would be awesome! Thank you!

Mindy
 

Alyssa

New member
My 2yo might have CF. A few questions

Unfortunately, yes it is possible that weight gain problems might be all you will see for symptoms. <b>But it's also very possible it is not CF </b>and the doctors are doing a good job of ruling it out.

Something that <i>usually</i> goes along with CF & weight gain issues is very smelly bowel movements -- greesy, oily, orangish colored poo. Is that happening?

Sweat tests results can be available on the same day, but most places it is at least the very next day.

If you get a very clear low number, like under 10, you are probably in good shape, but if it comes back in the 20's or 30's you really need to look into genetic testing -- too many people on this board (my kids included) have normal or borderline sweat test numbers to believe that it is a full proof negative test. See my blog page for details about sweat testing and our personal experience with genetic testing.

Two things you want to make sure you know about the sweat test:
1) is it being administered by an accredited CF center? If not, get to an accredited center.
2) get the actual number - don't just settle for "negative" -- my daughter went undiagnosed for 8 years because she has a "normal" number -- you need to know what the number is (like I said above)

another next step would be to ask about fecal fat testing - this will tell them if there are enough enzymes getting into her system from the pancreas or not. Without enzymes she would not be able to digest her food correctly and therefore not be able to gain weight (and most likely have the very foul smelling and greasy poo). Many people with pancreatic insufficient CF take enzymes with their food, and they start gaining weight.
 

Alyssa

New member
My 2yo might have CF. A few questions

Unfortunately, yes it is possible that weight gain problems might be all you will see for symptoms. <b>But it's also very possible it is not CF </b>and the doctors are doing a good job of ruling it out.

Something that <i>usually</i> goes along with CF & weight gain issues is very smelly bowel movements -- greesy, oily, orangish colored poo. Is that happening?

Sweat tests results can be available on the same day, but most places it is at least the very next day.

If you get a very clear low number, like under 10, you are probably in good shape, but if it comes back in the 20's or 30's you really need to look into genetic testing -- too many people on this board (my kids included) have normal or borderline sweat test numbers to believe that it is a full proof negative test. See my blog page for details about sweat testing and our personal experience with genetic testing.

Two things you want to make sure you know about the sweat test:
1) is it being administered by an accredited CF center? If not, get to an accredited center.
2) get the actual number - don't just settle for "negative" -- my daughter went undiagnosed for 8 years because she has a "normal" number -- you need to know what the number is (like I said above)

another next step would be to ask about fecal fat testing - this will tell them if there are enough enzymes getting into her system from the pancreas or not. Without enzymes she would not be able to digest her food correctly and therefore not be able to gain weight (and most likely have the very foul smelling and greasy poo). Many people with pancreatic insufficient CF take enzymes with their food, and they start gaining weight.
 

Alyssa

New member
My 2yo might have CF. A few questions

Unfortunately, yes it is possible that weight gain problems might be all you will see for symptoms. <b>But it's also very possible it is not CF </b>and the doctors are doing a good job of ruling it out.

Something that <i>usually</i> goes along with CF & weight gain issues is very smelly bowel movements -- greesy, oily, orangish colored poo. Is that happening?

Sweat tests results can be available on the same day, but most places it is at least the very next day.

If you get a very clear low number, like under 10, you are probably in good shape, but if it comes back in the 20's or 30's you really need to look into genetic testing -- too many people on this board (my kids included) have normal or borderline sweat test numbers to believe that it is a full proof negative test. See my blog page for details about sweat testing and our personal experience with genetic testing.

Two things you want to make sure you know about the sweat test:
1) is it being administered by an accredited CF center? If not, get to an accredited center.
2) get the actual number - don't just settle for "negative" -- my daughter went undiagnosed for 8 years because she has a "normal" number -- you need to know what the number is (like I said above)

another next step would be to ask about fecal fat testing - this will tell them if there are enough enzymes getting into her system from the pancreas or not. Without enzymes she would not be able to digest her food correctly and therefore not be able to gain weight (and most likely have the very foul smelling and greasy poo). Many people with pancreatic insufficient CF take enzymes with their food, and they start gaining weight.
 

Alyssa

New member
My 2yo might have CF. A few questions

Unfortunately, yes it is possible that weight gain problems might be all you will see for symptoms. <b>But it's also very possible it is not CF </b>and the doctors are doing a good job of ruling it out.

Something that <i>usually</i> goes along with CF & weight gain issues is very smelly bowel movements -- greesy, oily, orangish colored poo. Is that happening?

Sweat tests results can be available on the same day, but most places it is at least the very next day.

If you get a very clear low number, like under 10, you are probably in good shape, but if it comes back in the 20's or 30's you really need to look into genetic testing -- too many people on this board (my kids included) have normal or borderline sweat test numbers to believe that it is a full proof negative test. See my blog page for details about sweat testing and our personal experience with genetic testing.

Two things you want to make sure you know about the sweat test:
1) is it being administered by an accredited CF center? If not, get to an accredited center.
2) get the actual number - don't just settle for "negative" -- my daughter went undiagnosed for 8 years because she has a "normal" number -- you need to know what the number is (like I said above)

another next step would be to ask about fecal fat testing - this will tell them if there are enough enzymes getting into her system from the pancreas or not. Without enzymes she would not be able to digest her food correctly and therefore not be able to gain weight (and most likely have the very foul smelling and greasy poo). Many people with pancreatic insufficient CF take enzymes with their food, and they start gaining weight.
 

Alyssa

New member
My 2yo might have CF. A few questions

Unfortunately, yes it is possible that weight gain problems might be all you will see for symptoms. <b>But it's also very possible it is not CF </b>and the doctors are doing a good job of ruling it out.

Something that <i>usually</i> goes along with CF & weight gain issues is very smelly bowel movements -- greesy, oily, orangish colored poo. Is that happening?

Sweat tests results can be available on the same day, but most places it is at least the very next day.

If you get a very clear low number, like under 10, you are probably in good shape, but if it comes back in the 20's or 30's you really need to look into genetic testing -- too many people on this board (my kids included) have normal or borderline sweat test numbers to believe that it is a full proof negative test. See my blog page for details about sweat testing and our personal experience with genetic testing.

Two things you want to make sure you know about the sweat test:
1) is it being administered by an accredited CF center? If not, get to an accredited center.
2) get the actual number - don't just settle for "negative" -- my daughter went undiagnosed for 8 years because she has a "normal" number -- you need to know what the number is (like I said above)

another next step would be to ask about fecal fat testing - this will tell them if there are enough enzymes getting into her system from the pancreas or not. Without enzymes she would not be able to digest her food correctly and therefore not be able to gain weight (and most likely have the very foul smelling and greasy poo). Many people with pancreatic insufficient CF take enzymes with their food, and they start gaining weight.
 

mom2Kierstyn

New member
My 2yo might have CF. A few questions

Thank you for the info! Kierstyn's poo looks and smells normal to me. Right now it is very messy and smelly but she is on Augmentin for her pneumonia. I would say that except for her weight, she has been very healthy. A few colds maybe but that's about it. Thank you for the info on the numbers. I will definitely ask for it. I think we are going to an accredited place but I'll check. Our local hospital doesn't do the tests so we are going to a place about 45 minutes away. I'll LYK what happens! Thank you!

Mindy
 

mom2Kierstyn

New member
My 2yo might have CF. A few questions

Thank you for the info! Kierstyn's poo looks and smells normal to me. Right now it is very messy and smelly but she is on Augmentin for her pneumonia. I would say that except for her weight, she has been very healthy. A few colds maybe but that's about it. Thank you for the info on the numbers. I will definitely ask for it. I think we are going to an accredited place but I'll check. Our local hospital doesn't do the tests so we are going to a place about 45 minutes away. I'll LYK what happens! Thank you!

Mindy
 

mom2Kierstyn

New member
My 2yo might have CF. A few questions

Thank you for the info! Kierstyn's poo looks and smells normal to me. Right now it is very messy and smelly but she is on Augmentin for her pneumonia. I would say that except for her weight, she has been very healthy. A few colds maybe but that's about it. Thank you for the info on the numbers. I will definitely ask for it. I think we are going to an accredited place but I'll check. Our local hospital doesn't do the tests so we are going to a place about 45 minutes away. I'll LYK what happens! Thank you!

Mindy
 

mom2Kierstyn

New member
My 2yo might have CF. A few questions

Thank you for the info! Kierstyn's poo looks and smells normal to me. Right now it is very messy and smelly but she is on Augmentin for her pneumonia. I would say that except for her weight, she has been very healthy. A few colds maybe but that's about it. Thank you for the info on the numbers. I will definitely ask for it. I think we are going to an accredited place but I'll check. Our local hospital doesn't do the tests so we are going to a place about 45 minutes away. I'll LYK what happens! Thank you!

Mindy
 

mom2Kierstyn

New member
My 2yo might have CF. A few questions

Thank you for the info! Kierstyn's poo looks and smells normal to me. Right now it is very messy and smelly but she is on Augmentin for her pneumonia. I would say that except for her weight, she has been very healthy. A few colds maybe but that's about it. Thank you for the info on the numbers. I will definitely ask for it. I think we are going to an accredited place but I'll check. Our local hospital doesn't do the tests so we are going to a place about 45 minutes away. I'll LYK what happens! Thank you!

Mindy
 
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