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dmeri
03-12-2007, 06:07 PM
Hi, My son, Jackson (2), is awaiting his sweat test on Wed 3/14/07. We had one with my daughter when she was three, but she was negative, and progressed normally. I want some advice. I am a jump in full guns kind of mom, so I do all my research before the tests. This is what we are seeing: Failure to Thrive, low weight (25 lbs now), Sinus infections since Nov 06, very small for his age, eats constantly, drinks constantly, does not normally sleep through the night. We recently saw the Ear Nose Throat specialist and found that he has large adenoids (not large enough to take out now). What does everyone think. Does this sound like it could be CF. I have a great Pedi. and Endo working with us now, and they have been suggesting a sweat test since he was about 6 months. I just spoke to his doc Wed, he doen't know why it was put off so long. He says he doesn't think it sounds like CF, but wants to rule it out. Thanks for the advice. Denise Meri

dmeri
03-12-2007, 06:07 PM
Hi, My son, Jackson (2), is awaiting his sweat test on Wed 3/14/07. We had one with my daughter when she was three, but she was negative, and progressed normally. I want some advice. I am a jump in full guns kind of mom, so I do all my research before the tests. This is what we are seeing: Failure to Thrive, low weight (25 lbs now), Sinus infections since Nov 06, very small for his age, eats constantly, drinks constantly, does not normally sleep through the night. We recently saw the Ear Nose Throat specialist and found that he has large adenoids (not large enough to take out now). What does everyone think. Does this sound like it could be CF. I have a great Pedi. and Endo working with us now, and they have been suggesting a sweat test since he was about 6 months. I just spoke to his doc Wed, he doen't know why it was put off so long. He says he doesn't think it sounds like CF, but wants to rule it out. Thanks for the advice. Denise Meri

dmeri
03-12-2007, 06:07 PM
Hi, My son, Jackson (2), is awaiting his sweat test on Wed 3/14/07. We had one with my daughter when she was three, but she was negative, and progressed normally. I want some advice. I am a jump in full guns kind of mom, so I do all my research before the tests. This is what we are seeing: Failure to Thrive, low weight (25 lbs now), Sinus infections since Nov 06, very small for his age, eats constantly, drinks constantly, does not normally sleep through the night. We recently saw the Ear Nose Throat specialist and found that he has large adenoids (not large enough to take out now). What does everyone think. Does this sound like it could be CF. I have a great Pedi. and Endo working with us now, and they have been suggesting a sweat test since he was about 6 months. I just spoke to his doc Wed, he doen't know why it was put off so long. He says he doesn't think it sounds like CF, but wants to rule it out. Thanks for the advice. Denise Meri

Mommafirst
03-12-2007, 06:33 PM
Hi Denise,<br>
<br>
It doesn't sound like "classic" CF to me, but what do I know! LOL! There are lots of atypical presentations of CF too. My daughter has an atypical presentation. I think its great that you are going for the sweat test. Be aware, though, that sometimes sweat results don't give you definitive answers. Anything borderline (30-60) or even close to the borderline and I would encourage you to press for genetic testing as well. If its not CF, you will rule it out conclusively. If it is, you may catch an atypical presentation. Good luck!!!

Mommafirst
03-12-2007, 06:33 PM
Hi Denise,<br>
<br>
It doesn't sound like "classic" CF to me, but what do I know! LOL! There are lots of atypical presentations of CF too. My daughter has an atypical presentation. I think its great that you are going for the sweat test. Be aware, though, that sometimes sweat results don't give you definitive answers. Anything borderline (30-60) or even close to the borderline and I would encourage you to press for genetic testing as well. If its not CF, you will rule it out conclusively. If it is, you may catch an atypical presentation. Good luck!!!

Mommafirst
03-12-2007, 06:33 PM
Hi Denise,<br>
<br>
It doesn't sound like "classic" CF to me, but what do I know! LOL! There are lots of atypical presentations of CF too. My daughter has an atypical presentation. I think its great that you are going for the sweat test. Be aware, though, that sometimes sweat results don't give you definitive answers. Anything borderline (30-60) or even close to the borderline and I would encourage you to press for genetic testing as well. If its not CF, you will rule it out conclusively. If it is, you may catch an atypical presentation. Good luck!!!

dmeri
03-12-2007, 06:46 PM
Thanks, I'll keep that in mind. With this little one I just have a "feeling" I know that most parents feel the same way.

dmeri
03-12-2007, 06:46 PM
Thanks, I'll keep that in mind. With this little one I just have a "feeling" I know that most parents feel the same way.

dmeri
03-12-2007, 06:46 PM
Thanks, I'll keep that in mind. With this little one I just have a "feeling" I know that most parents feel the same way.

okok
03-13-2007, 03:42 AM
Hi,

I am not sure about this either but if the failure to thrive is due to pancreatic insuffiency then it is probably more of a typical CF case rather than atypical CF. Two is a very young age and it is not uncommon even for kids with typical CF to not have developed any lung complications at that age.

okok
03-13-2007, 03:42 AM
Hi,

I am not sure about this either but if the failure to thrive is due to pancreatic insuffiency then it is probably more of a typical CF case rather than atypical CF. Two is a very young age and it is not uncommon even for kids with typical CF to not have developed any lung complications at that age.

okok
03-13-2007, 03:42 AM
Hi,

I am not sure about this either but if the failure to thrive is due to pancreatic insuffiency then it is probably more of a typical CF case rather than atypical CF. Two is a very young age and it is not uncommon even for kids with typical CF to not have developed any lung complications at that age.

jam0913
03-13-2007, 04:39 PM
My two year old is going in for his sweat test 3/14 as well with almost the EXACT same symptoms. He drinks (and has always drank) at least a gallon of milk every two days, and he is still only 28 pounds. He doesn't sleep through the night still, he was just hospitalized with sinusitis in which all of his sinuses were infected and spent four days on IV antibiotics to get rid of it. It sounds like we're dealing with the same thing! From what I've read, there are more atypical cases of CF than "typical" cases. So good luck and keep us posted!

jam0913
03-13-2007, 04:39 PM
My two year old is going in for his sweat test 3/14 as well with almost the EXACT same symptoms. He drinks (and has always drank) at least a gallon of milk every two days, and he is still only 28 pounds. He doesn't sleep through the night still, he was just hospitalized with sinusitis in which all of his sinuses were infected and spent four days on IV antibiotics to get rid of it. It sounds like we're dealing with the same thing! From what I've read, there are more atypical cases of CF than "typical" cases. So good luck and keep us posted!

jam0913
03-13-2007, 04:39 PM
My two year old is going in for his sweat test 3/14 as well with almost the EXACT same symptoms. He drinks (and has always drank) at least a gallon of milk every two days, and he is still only 28 pounds. He doesn't sleep through the night still, he was just hospitalized with sinusitis in which all of his sinuses were infected and spent four days on IV antibiotics to get rid of it. It sounds like we're dealing with the same thing! From what I've read, there are more atypical cases of CF than "typical" cases. So good luck and keep us posted!

Alyssa
03-14-2007, 01:46 AM
Ditto "classic or a-typical" stuff.... kind of :-) Absent the lung issues (which we all know can and usually does happen later on) it sounds pretty classic to me. Assuming the failure to thrive is due to being pancreatic insufficient.

Also ditto to the sweat test numbers -- be very suspicious of numbers anywhere in the 30's and above (see my blog for details of what happened to us) They say it goes like this:

less than 40 is "normal"
41-60 is "borderline"
61 and above is "positive"

My kids numbers are 38 & 41. There are a lot of people on this website with "normal" sweat tests that do in fact have CF. Many doctors (not experienced with CF) do not realize that.

Alyssa
03-14-2007, 01:46 AM
Ditto "classic or a-typical" stuff.... kind of :-) Absent the lung issues (which we all know can and usually does happen later on) it sounds pretty classic to me. Assuming the failure to thrive is due to being pancreatic insufficient.

Also ditto to the sweat test numbers -- be very suspicious of numbers anywhere in the 30's and above (see my blog for details of what happened to us) They say it goes like this:

less than 40 is "normal"
41-60 is "borderline"
61 and above is "positive"

My kids numbers are 38 & 41. There are a lot of people on this website with "normal" sweat tests that do in fact have CF. Many doctors (not experienced with CF) do not realize that.

Alyssa
03-14-2007, 01:46 AM
Ditto "classic or a-typical" stuff.... kind of :-) Absent the lung issues (which we all know can and usually does happen later on) it sounds pretty classic to me. Assuming the failure to thrive is due to being pancreatic insufficient.

Also ditto to the sweat test numbers -- be very suspicious of numbers anywhere in the 30's and above (see my blog for details of what happened to us) They say it goes like this:

less than 40 is "normal"
41-60 is "borderline"
61 and above is "positive"

My kids numbers are 38 & 41. There are a lot of people on this website with "normal" sweat tests that do in fact have CF. Many doctors (not experienced with CF) do not realize that.

dmeri
03-16-2007, 06:05 PM
Well we got our test results back in less than 24 hours. They said he was negative. Scores being 11 and 12. We are begining immune system tests on Monday, I am releaved, but also seem to feel disapointed that we don't have any answers. He is doing great this week. I will everyone well, thank you for your help through this test. Good luck to all in the future. Denise Meri

dmeri
03-16-2007, 06:05 PM
Well we got our test results back in less than 24 hours. They said he was negative. Scores being 11 and 12. We are begining immune system tests on Monday, I am releaved, but also seem to feel disapointed that we don't have any answers. He is doing great this week. I will everyone well, thank you for your help through this test. Good luck to all in the future. Denise Meri

dmeri
03-16-2007, 06:05 PM
Well we got our test results back in less than 24 hours. They said he was negative. Scores being 11 and 12. We are begining immune system tests on Monday, I am releaved, but also seem to feel disapointed that we don't have any answers. He is doing great this week. I will everyone well, thank you for your help through this test. Good luck to all in the future. Denise Meri

Alyssa
03-16-2007, 09:00 PM
That's wonderful that he scored quite low. Best of luck!

Alyssa
03-16-2007, 09:00 PM
That's wonderful that he scored quite low. Best of luck!

Alyssa
03-16-2007, 09:00 PM
That's wonderful that he scored quite low. Best of luck!