Worried sick...

H

honorlynn

New member
I have been reading the posts and the forums for a week or so now ever since my doctor sent us out for a sweat test, and y'all are all so great.
My daughter is ten months old and she is so very tiny. She has held pretty steady at just under 15lbs for about two months now. She has had four pretty severe colds in the last couple months and the stuff that is coming out of her diaper is pretty scary. She had severe reflux until she was 6 months old so we had her on Prevacid. However, she doen't taste salty at all- is that a big deal? The doctor finally ordered a sweat test last week, so we went for the sweat test yesterday at the CF clinic here in Dallas and they couldn't get her to sweat enough so they want us to come back on Monday. I asked the doctor if we could just do the gene screen and she won't order it until a positive sweat test. Is that protocol? I am ready for a definate diagnosis because she is coughing all night again and doesn't want to eat. I am so sick of everybody making comments about how small she is and don't we feed her enough...

What do y'all think, she I push for the Ambry and does it saound like CF to you???
Thank you sooo much!
 
H

honorlynn

New member
I have been reading the posts and the forums for a week or so now ever since my doctor sent us out for a sweat test, and y'all are all so great.
My daughter is ten months old and she is so very tiny. She has held pretty steady at just under 15lbs for about two months now. She has had four pretty severe colds in the last couple months and the stuff that is coming out of her diaper is pretty scary. She had severe reflux until she was 6 months old so we had her on Prevacid. However, she doen't taste salty at all- is that a big deal? The doctor finally ordered a sweat test last week, so we went for the sweat test yesterday at the CF clinic here in Dallas and they couldn't get her to sweat enough so they want us to come back on Monday. I asked the doctor if we could just do the gene screen and she won't order it until a positive sweat test. Is that protocol? I am ready for a definate diagnosis because she is coughing all night again and doesn't want to eat. I am so sick of everybody making comments about how small she is and don't we feed her enough...

What do y'all think, she I push for the Ambry and does it saound like CF to you???
Thank you sooo much!
 
H

honorlynn

New member
I have been reading the posts and the forums for a week or so now ever since my doctor sent us out for a sweat test, and y'all are all so great.
My daughter is ten months old and she is so very tiny. She has held pretty steady at just under 15lbs for about two months now. She has had four pretty severe colds in the last couple months and the stuff that is coming out of her diaper is pretty scary. She had severe reflux until she was 6 months old so we had her on Prevacid. However, she doen't taste salty at all- is that a big deal? The doctor finally ordered a sweat test last week, so we went for the sweat test yesterday at the CF clinic here in Dallas and they couldn't get her to sweat enough so they want us to come back on Monday. I asked the doctor if we could just do the gene screen and she won't order it until a positive sweat test. Is that protocol? I am ready for a definate diagnosis because she is coughing all night again and doesn't want to eat. I am so sick of everybody making comments about how small she is and don't we feed her enough...

What do y'all think, she I push for the Ambry and does it saound like CF to you???
Thank you sooo much!
 
H

honorlynn

New member
I have been reading the posts and the forums for a week or so now ever since my doctor sent us out for a sweat test, and y'all are all so great.
My daughter is ten months old and she is so very tiny. She has held pretty steady at just under 15lbs for about two months now. She has had four pretty severe colds in the last couple months and the stuff that is coming out of her diaper is pretty scary. She had severe reflux until she was 6 months old so we had her on Prevacid. However, she doen't taste salty at all- is that a big deal? The doctor finally ordered a sweat test last week, so we went for the sweat test yesterday at the CF clinic here in Dallas and they couldn't get her to sweat enough so they want us to come back on Monday. I asked the doctor if we could just do the gene screen and she won't order it until a positive sweat test. Is that protocol? I am ready for a definate diagnosis because she is coughing all night again and doesn't want to eat. I am so sick of everybody making comments about how small she is and don't we feed her enough...

What do y'all think, she I push for the Ambry and does it saound like CF to you???
Thank you sooo much!
 
H

honorlynn

New member
I have been reading the posts and the forums for a week or so now ever since my doctor sent us out for a sweat test, and y'all are all so great.
My daughter is ten months old and she is so very tiny. She has held pretty steady at just under 15lbs for about two months now. She has had four pretty severe colds in the last couple months and the stuff that is coming out of her diaper is pretty scary. She had severe reflux until she was 6 months old so we had her on Prevacid. However, she doen't taste salty at all- is that a big deal? The doctor finally ordered a sweat test last week, so we went for the sweat test yesterday at the CF clinic here in Dallas and they couldn't get her to sweat enough so they want us to come back on Monday. I asked the doctor if we could just do the gene screen and she won't order it until a positive sweat test. Is that protocol? I am ready for a definate diagnosis because she is coughing all night again and doesn't want to eat. I am so sick of everybody making comments about how small she is and don't we feed her enough...

What do y'all think, she I push for the Ambry and does it saound like CF to you???
Thank you sooo much!
 
H

honorlynn

New member
I have been reading the posts and the forums for a week or so now ever since my doctor sent us out for a sweat test, and y'all are all so great.
My daughter is ten months old and she is so very tiny. She has held pretty steady at just under 15lbs for about two months now. She has had four pretty severe colds in the last couple months and the stuff that is coming out of her diaper is pretty scary. She had severe reflux until she was 6 months old so we had her on Prevacid. However, she doen't taste salty at all- is that a big deal? The doctor finally ordered a sweat test last week, so we went for the sweat test yesterday at the CF clinic here in Dallas and they couldn't get her to sweat enough so they want us to come back on Monday. I asked the doctor if we could just do the gene screen and she won't order it until a positive sweat test. Is that protocol? I am ready for a definate diagnosis because she is coughing all night again and doesn't want to eat. I am so sick of everybody making comments about how small she is and don't we feed her enough...

What do y'all think, she I push for the Ambry and does it saound like CF to you???
Thank you sooo much!
 
K

ktsmom

New member
Hi - Protocol varies by clinic. I would say that if they can't get enough sweat again, then it is time to push for the full Ambry panel. If they resist, have them do the fecal fat test to see if she is pancreatic insufficient. Have them do blood work to check her vitamin levels.

If the sweat test can be done successfully, they will do a genetic blood work up any way.

As far as the tasting salty, some do and some don't. Have you been licking her (LOL! Trying to insert some humour here!) I licked my daughter during the five days between a tentative diagnosis and our "real" diagnosis and she would ask me "Mom, are you kissing me or LICKING me?" She was three.

Anyway, sounds like you are well informed. Keep pushing for answers and please let us know how it turns out.
 
K

ktsmom

New member
Hi - Protocol varies by clinic. I would say that if they can't get enough sweat again, then it is time to push for the full Ambry panel. If they resist, have them do the fecal fat test to see if she is pancreatic insufficient. Have them do blood work to check her vitamin levels.

If the sweat test can be done successfully, they will do a genetic blood work up any way.

As far as the tasting salty, some do and some don't. Have you been licking her (LOL! Trying to insert some humour here!) I licked my daughter during the five days between a tentative diagnosis and our "real" diagnosis and she would ask me "Mom, are you kissing me or LICKING me?" She was three.

Anyway, sounds like you are well informed. Keep pushing for answers and please let us know how it turns out.
 
K

ktsmom

New member
Hi - Protocol varies by clinic. I would say that if they can't get enough sweat again, then it is time to push for the full Ambry panel. If they resist, have them do the fecal fat test to see if she is pancreatic insufficient. Have them do blood work to check her vitamin levels.

If the sweat test can be done successfully, they will do a genetic blood work up any way.

As far as the tasting salty, some do and some don't. Have you been licking her (LOL! Trying to insert some humour here!) I licked my daughter during the five days between a tentative diagnosis and our "real" diagnosis and she would ask me "Mom, are you kissing me or LICKING me?" She was three.

Anyway, sounds like you are well informed. Keep pushing for answers and please let us know how it turns out.
 
K

ktsmom

New member
Hi - Protocol varies by clinic. I would say that if they can't get enough sweat again, then it is time to push for the full Ambry panel. If they resist, have them do the fecal fat test to see if she is pancreatic insufficient. Have them do blood work to check her vitamin levels.

If the sweat test can be done successfully, they will do a genetic blood work up any way.

As far as the tasting salty, some do and some don't. Have you been licking her (LOL! Trying to insert some humour here!) I licked my daughter during the five days between a tentative diagnosis and our "real" diagnosis and she would ask me "Mom, are you kissing me or LICKING me?" She was three.

Anyway, sounds like you are well informed. Keep pushing for answers and please let us know how it turns out.
 
K

ktsmom

New member
Hi - Protocol varies by clinic. I would say that if they can't get enough sweat again, then it is time to push for the full Ambry panel. If they resist, have them do the fecal fat test to see if she is pancreatic insufficient. Have them do blood work to check her vitamin levels.

If the sweat test can be done successfully, they will do a genetic blood work up any way.

As far as the tasting salty, some do and some don't. Have you been licking her (LOL! Trying to insert some humour here!) I licked my daughter during the five days between a tentative diagnosis and our "real" diagnosis and she would ask me "Mom, are you kissing me or LICKING me?" She was three.

Anyway, sounds like you are well informed. Keep pushing for answers and please let us know how it turns out.
 
K

ktsmom

New member
Hi - Protocol varies by clinic. I would say that if they can't get enough sweat again, then it is time to push for the full Ambry panel. If they resist, have them do the fecal fat test to see if she is pancreatic insufficient. Have them do blood work to check her vitamin levels.

If the sweat test can be done successfully, they will do a genetic blood work up any way.

As far as the tasting salty, some do and some don't. Have you been licking her (LOL! Trying to insert some humour here!) I licked my daughter during the five days between a tentative diagnosis and our "real" diagnosis and she would ask me "Mom, are you kissing me or LICKING me?" She was three.

Anyway, sounds like you are well informed. Keep pushing for answers and please let us know how it turns out.
 
H

honorlynn

New member
Oh yeah! Have I been licking her! All over- I even went 2 days without bathing her to see if that made any difference! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for the advice! I have scheduled an appointment with a new pediatrician who works at the CF clinic a couple days a week- so even if it isn't CF I still have a great doctor!
 
H

honorlynn

New member
Oh yeah! Have I been licking her! All over- I even went 2 days without bathing her to see if that made any difference! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for the advice! I have scheduled an appointment with a new pediatrician who works at the CF clinic a couple days a week- so even if it isn't CF I still have a great doctor!
 
H

honorlynn

New member
Oh yeah! Have I been licking her! All over- I even went 2 days without bathing her to see if that made any difference! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for the advice! I have scheduled an appointment with a new pediatrician who works at the CF clinic a couple days a week- so even if it isn't CF I still have a great doctor!
 
H

honorlynn

New member
Oh yeah! Have I been licking her! All over- I even went 2 days without bathing her to see if that made any difference! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for the advice! I have scheduled an appointment with a new pediatrician who works at the CF clinic a couple days a week- so even if it isn't CF I still have a great doctor!
 
H

honorlynn

New member
Oh yeah! Have I been licking her! All over- I even went 2 days without bathing her to see if that made any difference! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for the advice! I have scheduled an appointment with a new pediatrician who works at the CF clinic a couple days a week- so even if it isn't CF I still have a great doctor!
 
H

honorlynn

New member
Oh yeah! Have I been licking her! All over- I even went 2 days without bathing her to see if that made any difference! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks for the advice! I have scheduled an appointment with a new pediatrician who works at the CF clinic a couple days a week- so even if it isn't CF I still have a great doctor!
 
T

tammykrumrey

Guest
I would push for the full ambry test as well. I do not remember my daughters tasting salty when they were babies, well at least my oldest. My youngest one I thought did because I was so worried that she had CF (which she did). Even at one week old, while waiting for the test to come back, I was telling everyone that I just knew in my heart she had it. Of course everyone thought I was overreacting.

I do not know what my oldest daughters sweat test results were, but I know my second daughters was 115.

They do taste salty to me now that they are older and sweat more often while running around playing. And I think that salty sweat has a destinctive smell to it, especially in their hair when they sweat.

I do hope that it comes back negative, but if not...we are here for you<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
T

tammykrumrey

Guest
I would push for the full ambry test as well. I do not remember my daughters tasting salty when they were babies, well at least my oldest. My youngest one I thought did because I was so worried that she had CF (which she did). Even at one week old, while waiting for the test to come back, I was telling everyone that I just knew in my heart she had it. Of course everyone thought I was overreacting.

I do not know what my oldest daughters sweat test results were, but I know my second daughters was 115.

They do taste salty to me now that they are older and sweat more often while running around playing. And I think that salty sweat has a destinctive smell to it, especially in their hair when they sweat.

I do hope that it comes back negative, but if not...we are here for you<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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