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Symptoms of CF in Your Infant?

C

CreamOfTheCrop

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ctalbott0609</b></i>

Sorry for the slow response. Paige is super cranky tonight!



When I say greasy, I mean it looked exactly like grease pouring out of her bottom! It was so bad, and looked like the grease you get when you make spaghetti <img src="i/expressions/face-icon-small-sad.gif" border="0"></end quote></div>

Oh wow...is she in alot of pain? i hope you dont mind me asking...how much does she weigh now? I really dont think MaKenna has it since, but they just want to make sure she doesnt..but i wanted to get informed of it just incase...
 
C

CreamOfTheCrop

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ctalbott0609</b></i>

Sorry for the slow response. Paige is super cranky tonight!



When I say greasy, I mean it looked exactly like grease pouring out of her bottom! It was so bad, and looked like the grease you get when you make spaghetti <img src="i/expressions/face-icon-small-sad.gif" border="0"></end quote></div>

Oh wow...is she in alot of pain? i hope you dont mind me asking...how much does she weigh now? I really dont think MaKenna has it since, but they just want to make sure she doesnt..but i wanted to get informed of it just incase...
 
C

CreamOfTheCrop

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ctalbott0609</b></i>

Sorry for the slow response. Paige is super cranky tonight!



When I say greasy, I mean it looked exactly like grease pouring out of her bottom! It was so bad, and looked like the grease you get when you make spaghetti <img src="i/expressions/face-icon-small-sad.gif" border="0"></end quote></div>

Oh wow...is she in alot of pain? i hope you dont mind me asking...how much does she weigh now? I really dont think MaKenna has it since, but they just want to make sure she doesnt..but i wanted to get informed of it just incase...
 
C

CreamOfTheCrop

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ctalbott0609</b></i>

Sorry for the slow response. Paige is super cranky tonight!



When I say greasy, I mean it looked exactly like grease pouring out of her bottom! It was so bad, and looked like the grease you get when you make spaghetti <img src="i/expressions/face-icon-small-sad.gif" border="0"></end quote>

Oh wow...is she in alot of pain? i hope you dont mind me asking...how much does she weigh now? I really dont think MaKenna has it since, but they just want to make sure she doesnt..but i wanted to get informed of it just incase...
 
C

CreamOfTheCrop

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ctalbott0609</b></i>
<br />
<br />Sorry for the slow response. Paige is super cranky tonight!
<br />
<br />
<br />
<br />When I say greasy, I mean it looked exactly like grease pouring out of her bottom! It was so bad, and looked like the grease you get when you make spaghetti <img src="i/expressions/face-icon-small-sad.gif" border="0"></end quote>
<br />
<br />Oh wow...is she in alot of pain? i hope you dont mind me asking...how much does she weigh now? I really dont think MaKenna has it since, but they just want to make sure she doesnt..but i wanted to get informed of it just incase...
 
C

ctalbott0609

New member
I'm not sure if she's in pain or not. Her bottom is blistered, and bleeds, but we're working on that. She was born at 7lbs 14oz. She was 7lbs 5oz when we left the Hospital (Which is normal for infants to loose weight during that time) At one week she was 8lbs 4 oz, and then a few days later, at WIC, she was down to 7lbs 13oz. After three weeks, and being on the medicines that treat CF, she was up to 8lbs 4oz again, and as of today, 7 weeks later, she's up to 9lbs 4oz. It's been quite a roller coaster!

IF IF IF! She does have CF, the medicines they will put her on, will help her body absorb the formula, and she'll feel better, and eat better, very very quickly.

I remember being in your shoes just a few short weeks ago. You're doing everything right. Knowledge IS power. Try to rest, remember to eat, and just have faith. Your little girl is a fighter <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

ctalbott0609

New member
I'm not sure if she's in pain or not. Her bottom is blistered, and bleeds, but we're working on that. She was born at 7lbs 14oz. She was 7lbs 5oz when we left the Hospital (Which is normal for infants to loose weight during that time) At one week she was 8lbs 4 oz, and then a few days later, at WIC, she was down to 7lbs 13oz. After three weeks, and being on the medicines that treat CF, she was up to 8lbs 4oz again, and as of today, 7 weeks later, she's up to 9lbs 4oz. It's been quite a roller coaster!

IF IF IF! She does have CF, the medicines they will put her on, will help her body absorb the formula, and she'll feel better, and eat better, very very quickly.

I remember being in your shoes just a few short weeks ago. You're doing everything right. Knowledge IS power. Try to rest, remember to eat, and just have faith. Your little girl is a fighter <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

ctalbott0609

New member
I'm not sure if she's in pain or not. Her bottom is blistered, and bleeds, but we're working on that. She was born at 7lbs 14oz. She was 7lbs 5oz when we left the Hospital (Which is normal for infants to loose weight during that time) At one week she was 8lbs 4 oz, and then a few days later, at WIC, she was down to 7lbs 13oz. After three weeks, and being on the medicines that treat CF, she was up to 8lbs 4oz again, and as of today, 7 weeks later, she's up to 9lbs 4oz. It's been quite a roller coaster!

IF IF IF! She does have CF, the medicines they will put her on, will help her body absorb the formula, and she'll feel better, and eat better, very very quickly.

I remember being in your shoes just a few short weeks ago. You're doing everything right. Knowledge IS power. Try to rest, remember to eat, and just have faith. Your little girl is a fighter <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

ctalbott0609

New member
I'm not sure if she's in pain or not. Her bottom is blistered, and bleeds, but we're working on that. She was born at 7lbs 14oz. She was 7lbs 5oz when we left the Hospital (Which is normal for infants to loose weight during that time) At one week she was 8lbs 4 oz, and then a few days later, at WIC, she was down to 7lbs 13oz. After three weeks, and being on the medicines that treat CF, she was up to 8lbs 4oz again, and as of today, 7 weeks later, she's up to 9lbs 4oz. It's been quite a roller coaster!

IF IF IF! She does have CF, the medicines they will put her on, will help her body absorb the formula, and she'll feel better, and eat better, very very quickly.

I remember being in your shoes just a few short weeks ago. You're doing everything right. Knowledge IS power. Try to rest, remember to eat, and just have faith. Your little girl is a fighter <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

ctalbott0609

New member
I'm not sure if she's in pain or not. Her bottom is blistered, and bleeds, but we're working on that. She was born at 7lbs 14oz. She was 7lbs 5oz when we left the Hospital (Which is normal for infants to loose weight during that time) At one week she was 8lbs 4 oz, and then a few days later, at WIC, she was down to 7lbs 13oz. After three weeks, and being on the medicines that treat CF, she was up to 8lbs 4oz again, and as of today, 7 weeks later, she's up to 9lbs 4oz. It's been quite a roller coaster!
<br />
<br />IF IF IF! She does have CF, the medicines they will put her on, will help her body absorb the formula, and she'll feel better, and eat better, very very quickly.
<br />
<br />I remember being in your shoes just a few short weeks ago. You're doing everything right. Knowledge IS power. Try to rest, remember to eat, and just have faith. Your little girl is a fighter <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />
 
D

dlo2977

New member
They are probably just testing routine blood work on her. The blood test for CF is to identify the genes present and they typically don't do that until after a positive sweat test. The sweat test is no big deal -- I was freaked out when I read about it online since it says it can irritate the skin and feel like a burn. They clean off the arm and then put a solution on the skin that makes it sweat. They cover that area and another area higher on the arm (with just saline solution to complete the circuit) and then put electrodes over them for 5 minutes. After that, they take everything off and tape a gauze to the one spot for sweat collection. In babies they will put a little heat pack over it to help them sweat. You wait 30 minutes and they take the gauze off. They measure the amount of chloride in the sweat. You should hear about the results the same day or by the next day.
 
D

dlo2977

New member
They are probably just testing routine blood work on her. The blood test for CF is to identify the genes present and they typically don't do that until after a positive sweat test. The sweat test is no big deal -- I was freaked out when I read about it online since it says it can irritate the skin and feel like a burn. They clean off the arm and then put a solution on the skin that makes it sweat. They cover that area and another area higher on the arm (with just saline solution to complete the circuit) and then put electrodes over them for 5 minutes. After that, they take everything off and tape a gauze to the one spot for sweat collection. In babies they will put a little heat pack over it to help them sweat. You wait 30 minutes and they take the gauze off. They measure the amount of chloride in the sweat. You should hear about the results the same day or by the next day.
 
D

dlo2977

New member
They are probably just testing routine blood work on her. The blood test for CF is to identify the genes present and they typically don't do that until after a positive sweat test. The sweat test is no big deal -- I was freaked out when I read about it online since it says it can irritate the skin and feel like a burn. They clean off the arm and then put a solution on the skin that makes it sweat. They cover that area and another area higher on the arm (with just saline solution to complete the circuit) and then put electrodes over them for 5 minutes. After that, they take everything off and tape a gauze to the one spot for sweat collection. In babies they will put a little heat pack over it to help them sweat. You wait 30 minutes and they take the gauze off. They measure the amount of chloride in the sweat. You should hear about the results the same day or by the next day.
 
D

dlo2977

New member
They are probably just testing routine blood work on her. The blood test for CF is to identify the genes present and they typically don't do that until after a positive sweat test. The sweat test is no big deal -- I was freaked out when I read about it online since it says it can irritate the skin and feel like a burn. They clean off the arm and then put a solution on the skin that makes it sweat. They cover that area and another area higher on the arm (with just saline solution to complete the circuit) and then put electrodes over them for 5 minutes. After that, they take everything off and tape a gauze to the one spot for sweat collection. In babies they will put a little heat pack over it to help them sweat. You wait 30 minutes and they take the gauze off. They measure the amount of chloride in the sweat. You should hear about the results the same day or by the next day.
 
D

dlo2977

New member
They are probably just testing routine blood work on her. The blood test for CF is to identify the genes present and they typically don't do that until after a positive sweat test. The sweat test is no big deal -- I was freaked out when I read about it online since it says it can irritate the skin and feel like a burn. They clean off the arm and then put a solution on the skin that makes it sweat. They cover that area and another area higher on the arm (with just saline solution to complete the circuit) and then put electrodes over them for 5 minutes. After that, they take everything off and tape a gauze to the one spot for sweat collection. In babies they will put a little heat pack over it to help them sweat. You wait 30 minutes and they take the gauze off. They measure the amount of chloride in the sweat. You should hear about the results the same day or by the next day.
 
J

julieann1966

New member
Hi, I went through similair with our daughter, I was breastfeeding her, she would be starving and within a minute she was screaming exactly as if I had inflicted pain on her. It was so upsetting but our doctor wouldn't take it seriously.

She didn't show up with oily stools until she was over 12 months old, in the mean time, I had given up eating dairy, soy, gluten, you name it I stopped eating it incase it was a sensitivity to something I was eating.

She was diagnosed at 16 months with CF after doing a sweat test that was very high, I believe it was 120.

Good luck, thinking of you.
 
J

julieann1966

New member
Hi, I went through similair with our daughter, I was breastfeeding her, she would be starving and within a minute she was screaming exactly as if I had inflicted pain on her. It was so upsetting but our doctor wouldn't take it seriously.

She didn't show up with oily stools until she was over 12 months old, in the mean time, I had given up eating dairy, soy, gluten, you name it I stopped eating it incase it was a sensitivity to something I was eating.

She was diagnosed at 16 months with CF after doing a sweat test that was very high, I believe it was 120.

Good luck, thinking of you.
 
J

julieann1966

New member
Hi, I went through similair with our daughter, I was breastfeeding her, she would be starving and within a minute she was screaming exactly as if I had inflicted pain on her. It was so upsetting but our doctor wouldn't take it seriously.

She didn't show up with oily stools until she was over 12 months old, in the mean time, I had given up eating dairy, soy, gluten, you name it I stopped eating it incase it was a sensitivity to something I was eating.

She was diagnosed at 16 months with CF after doing a sweat test that was very high, I believe it was 120.

Good luck, thinking of you.
 
J

julieann1966

New member
Hi, I went through similair with our daughter, I was breastfeeding her, she would be starving and within a minute she was screaming exactly as if I had inflicted pain on her. It was so upsetting but our doctor wouldn't take it seriously.

She didn't show up with oily stools until she was over 12 months old, in the mean time, I had given up eating dairy, soy, gluten, you name it I stopped eating it incase it was a sensitivity to something I was eating.

She was diagnosed at 16 months with CF after doing a sweat test that was very high, I believe it was 120.

Good luck, thinking of you.
 
J

julieann1966

New member
Hi, I went through similair with our daughter, I was breastfeeding her, she would be starving and within a minute she was screaming exactly as if I had inflicted pain on her. It was so upsetting but our doctor wouldn't take it seriously.
<br />
<br />She didn't show up with oily stools until she was over 12 months old, in the mean time, I had given up eating dairy, soy, gluten, you name it I stopped eating it incase it was a sensitivity to something I was eating.
<br />
<br />She was diagnosed at 16 months with CF after doing a sweat test that was very high, I believe it was 120.
<br />
<br />Good luck, thinking of you.
 
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