Possible CF

M

mom2boyz

New member
Hello my name is Heather and I have a 13 month old little boy named Colin. At his GI appointment yesterday his Dr. said to come back in a month and they are going to do the sweat test for CF. He has already had a fundo for severe reflux. He has started having tremors that might be related to his sugar levels but of course they are not sure. He has only gained 2lbs since december 2007, and currently weighs 18lbs 10ozs which is what he weighed on april 2nd. He seems to poop 3-4 times aday and sometimes they are very large. I don't know if I should have the test moved up or just wait it out. He is not eating hardly anything at all. I am terrified. Any advise or comments would be greatly appreciated.

Thanks
Heather<img src="i/expressions/face-icon-small-frown.gif" border="0">
 
M

mom2boyz

New member
Hello my name is Heather and I have a 13 month old little boy named Colin. At his GI appointment yesterday his Dr. said to come back in a month and they are going to do the sweat test for CF. He has already had a fundo for severe reflux. He has started having tremors that might be related to his sugar levels but of course they are not sure. He has only gained 2lbs since december 2007, and currently weighs 18lbs 10ozs which is what he weighed on april 2nd. He seems to poop 3-4 times aday and sometimes they are very large. I don't know if I should have the test moved up or just wait it out. He is not eating hardly anything at all. I am terrified. Any advise or comments would be greatly appreciated.

Thanks
Heather<img src="i/expressions/face-icon-small-frown.gif" border="0">
 
M

mom2boyz

New member
Hello my name is Heather and I have a 13 month old little boy named Colin. At his GI appointment yesterday his Dr. said to come back in a month and they are going to do the sweat test for CF. He has already had a fundo for severe reflux. He has started having tremors that might be related to his sugar levels but of course they are not sure. He has only gained 2lbs since december 2007, and currently weighs 18lbs 10ozs which is what he weighed on april 2nd. He seems to poop 3-4 times aday and sometimes they are very large. I don't know if I should have the test moved up or just wait it out. He is not eating hardly anything at all. I am terrified. Any advise or comments would be greatly appreciated.

Thanks
Heather<img src="i/expressions/face-icon-small-frown.gif" border="0">
 
J

JazzysMom

New member
IF the doctor is recommending the test then I would do it. IF it is CF you want to find out early to avoid treatment and try to avoid as much damage as possible. You should be happy that you even have a doctor who is willing to test. Many people have fought for testing. Might I suggest that in addition to the sweat test that you get genetic testing done. The sweat test use to be all that was available for testing, but it has become less reliable. Good Luck and let us know what happens!
 
J

JazzysMom

New member
IF the doctor is recommending the test then I would do it. IF it is CF you want to find out early to avoid treatment and try to avoid as much damage as possible. You should be happy that you even have a doctor who is willing to test. Many people have fought for testing. Might I suggest that in addition to the sweat test that you get genetic testing done. The sweat test use to be all that was available for testing, but it has become less reliable. Good Luck and let us know what happens!
 
J

JazzysMom

New member
IF the doctor is recommending the test then I would do it. IF it is CF you want to find out early to avoid treatment and try to avoid as much damage as possible. You should be happy that you even have a doctor who is willing to test. Many people have fought for testing. Might I suggest that in addition to the sweat test that you get genetic testing done. The sweat test use to be all that was available for testing, but it has become less reliable. Good Luck and let us know what happens!
 
M

mom2boyz

New member
Thank you so much for replying this is all new to me. He has already been through so much I get to start stressing all over again. They gave me some duocal powder to put in his food and drink have you ever heard of this? Now i don't know if i should worry about every runny nose and cough. Thanks again for replying.

Heather
 
M

mom2boyz

New member
Thank you so much for replying this is all new to me. He has already been through so much I get to start stressing all over again. They gave me some duocal powder to put in his food and drink have you ever heard of this? Now i don't know if i should worry about every runny nose and cough. Thanks again for replying.

Heather
 
M

mom2boyz

New member
Thank you so much for replying this is all new to me. He has already been through so much I get to start stressing all over again. They gave me some duocal powder to put in his food and drink have you ever heard of this? Now i don't know if i should worry about every runny nose and cough. Thanks again for replying.

Heather
 
J

JazzysMom

New member
Yes many of us use that powder. Its sounds like many CF symptoms to me, but it could be something else also. That is why I really suggest going with the testing. Do you know what is actual weight percentile is?
 
J

JazzysMom

New member
Yes many of us use that powder. Its sounds like many CF symptoms to me, but it could be something else also. That is why I really suggest going with the testing. Do you know what is actual weight percentile is?
 
J

JazzysMom

New member
Yes many of us use that powder. Its sounds like many CF symptoms to me, but it could be something else also. That is why I really suggest going with the testing. Do you know what is actual weight percentile is?
 
M

mom2boyz

New member
They said yesterday he has completely fell off the chart they didn't give me an exact percentile so I am not sure of that. I just about have to force him to eat a couple of bites or he would go all day without eating. I am definately going to have him tested I just don't know if I should wait a month or see if they can do it sooner I don't see how he is going as much as he is with as little as he is eating.

Heather
 
M

mom2boyz

New member
They said yesterday he has completely fell off the chart they didn't give me an exact percentile so I am not sure of that. I just about have to force him to eat a couple of bites or he would go all day without eating. I am definately going to have him tested I just don't know if I should wait a month or see if they can do it sooner I don't see how he is going as much as he is with as little as he is eating.

Heather
 
M

mom2boyz

New member
They said yesterday he has completely fell off the chart they didn't give me an exact percentile so I am not sure of that. I just about have to force him to eat a couple of bites or he would go all day without eating. I am definately going to have him tested I just don't know if I should wait a month or see if they can do it sooner I don't see how he is going as much as he is with as little as he is eating.

Heather
 
J

JazzysMom

New member
If you can get it done sooner that would be great. Genetic testing takes longer if you go in that direction, but sweat tests you can get that day or just a few days later. In the meantime since he is fussy & not eating a lot, I would concentrate on high calorie things. IF he eats mac & cheese....throw some extra cheese or milk. The powder can go in just about anything. You might want to even consider pediasure or some extra liquids with calories for the times you cant get him to eat. At this time its more of getting his weight on.
 
J

JazzysMom

New member
If you can get it done sooner that would be great. Genetic testing takes longer if you go in that direction, but sweat tests you can get that day or just a few days later. In the meantime since he is fussy & not eating a lot, I would concentrate on high calorie things. IF he eats mac & cheese....throw some extra cheese or milk. The powder can go in just about anything. You might want to even consider pediasure or some extra liquids with calories for the times you cant get him to eat. At this time its more of getting his weight on.
 
J

JazzysMom

New member
If you can get it done sooner that would be great. Genetic testing takes longer if you go in that direction, but sweat tests you can get that day or just a few days later. In the meantime since he is fussy & not eating a lot, I would concentrate on high calorie things. IF he eats mac & cheese....throw some extra cheese or milk. The powder can go in just about anything. You might want to even consider pediasure or some extra liquids with calories for the times you cant get him to eat. At this time its more of getting his weight on.
 
O

okok

New member
I was just wondering if your doctor mentioned why you are waiting a month before doing a sweat test??? I agree the sooner the better if possible.

Good luck and i hope your little boy is feeling better soon! let us know.
 
O

okok

New member
I was just wondering if your doctor mentioned why you are waiting a month before doing a sweat test??? I agree the sooner the better if possible.

Good luck and i hope your little boy is feeling better soon! let us know.
 
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