Cindy402

M

Mommafirst

Guest
Hi Cindy -


cindy402 said:
<div class="FTQUOTE"><begin quote>Help! My grandson Charlie, born 2/1/08 has come back with viral markers for CF. He will have a sweat test on 3/3....and I have told mom and dad to get genetic testing done too. Can anyone tell me early signs of CF? He is breastfed and nurses every 2 hrs....he seems to have alot of gas, and cries before he has a bm. His stools are orange in color and has small amount of mucus in it....I have no idea of what a "greesy stool" looks like. He does not have a salty taste, but his skin does seem very dry....his tummy even flakes dispite using baby lotion. I am so scared, and want to find out as much as I can. I have a thousand questions, and have no where to turn it seems. </end quote></div>


I didn't want your post to get buried. I saw your blog and thought this would be a good place to answer you. I'm not sure what you mean by "viral markers" -- do you mean the newborn CF screening? If so, the newborn screen does pick up a lot of carriers as opposed to kids with CF. The sweat test is an easy test, we had to do it on my daughter four times to get good results. It is not invasive and it won't hurt him. I hope you get good answers.

All your descriptions are really unclear to me.... they could be just plain normal baby stuff. But many CF babies are just plain normal for quite a while.

Please feel free to ask your questions here. We all know how hard it is as you start this journey and how much information there is to process. Hang in there!!!!
 
M

Mommafirst

Guest
Hi Cindy -


cindy402 said:
<div class="FTQUOTE"><begin quote>Help! My grandson Charlie, born 2/1/08 has come back with viral markers for CF. He will have a sweat test on 3/3....and I have told mom and dad to get genetic testing done too. Can anyone tell me early signs of CF? He is breastfed and nurses every 2 hrs....he seems to have alot of gas, and cries before he has a bm. His stools are orange in color and has small amount of mucus in it....I have no idea of what a "greesy stool" looks like. He does not have a salty taste, but his skin does seem very dry....his tummy even flakes dispite using baby lotion. I am so scared, and want to find out as much as I can. I have a thousand questions, and have no where to turn it seems. </end quote></div>


I didn't want your post to get buried. I saw your blog and thought this would be a good place to answer you. I'm not sure what you mean by "viral markers" -- do you mean the newborn CF screening? If so, the newborn screen does pick up a lot of carriers as opposed to kids with CF. The sweat test is an easy test, we had to do it on my daughter four times to get good results. It is not invasive and it won't hurt him. I hope you get good answers.

All your descriptions are really unclear to me.... they could be just plain normal baby stuff. But many CF babies are just plain normal for quite a while.

Please feel free to ask your questions here. We all know how hard it is as you start this journey and how much information there is to process. Hang in there!!!!
 
M

Mommafirst

Guest
Hi Cindy -


cindy402 said:
<div class="FTQUOTE"><begin quote>Help! My grandson Charlie, born 2/1/08 has come back with viral markers for CF. He will have a sweat test on 3/3....and I have told mom and dad to get genetic testing done too. Can anyone tell me early signs of CF? He is breastfed and nurses every 2 hrs....he seems to have alot of gas, and cries before he has a bm. His stools are orange in color and has small amount of mucus in it....I have no idea of what a "greesy stool" looks like. He does not have a salty taste, but his skin does seem very dry....his tummy even flakes dispite using baby lotion. I am so scared, and want to find out as much as I can. I have a thousand questions, and have no where to turn it seems. </end quote></div>


I didn't want your post to get buried. I saw your blog and thought this would be a good place to answer you. I'm not sure what you mean by "viral markers" -- do you mean the newborn CF screening? If so, the newborn screen does pick up a lot of carriers as opposed to kids with CF. The sweat test is an easy test, we had to do it on my daughter four times to get good results. It is not invasive and it won't hurt him. I hope you get good answers.

All your descriptions are really unclear to me.... they could be just plain normal baby stuff. But many CF babies are just plain normal for quite a while.

Please feel free to ask your questions here. We all know how hard it is as you start this journey and how much information there is to process. Hang in there!!!!
 
M

Mommafirst

Guest
Hi Cindy -


cindy402 said:
<div class="FTQUOTE"><begin quote>Help! My grandson Charlie, born 2/1/08 has come back with viral markers for CF. He will have a sweat test on 3/3....and I have told mom and dad to get genetic testing done too. Can anyone tell me early signs of CF? He is breastfed and nurses every 2 hrs....he seems to have alot of gas, and cries before he has a bm. His stools are orange in color and has small amount of mucus in it....I have no idea of what a "greesy stool" looks like. He does not have a salty taste, but his skin does seem very dry....his tummy even flakes dispite using baby lotion. I am so scared, and want to find out as much as I can. I have a thousand questions, and have no where to turn it seems. </end quote>


I didn't want your post to get buried. I saw your blog and thought this would be a good place to answer you. I'm not sure what you mean by "viral markers" -- do you mean the newborn CF screening? If so, the newborn screen does pick up a lot of carriers as opposed to kids with CF. The sweat test is an easy test, we had to do it on my daughter four times to get good results. It is not invasive and it won't hurt him. I hope you get good answers.

All your descriptions are really unclear to me.... they could be just plain normal baby stuff. But many CF babies are just plain normal for quite a while.

Please feel free to ask your questions here. We all know how hard it is as you start this journey and how much information there is to process. Hang in there!!!!
 
M

Mommafirst

Guest
Hi Cindy -
<br />
<br />
<br />cindy402 said:
<br /><div class="FTQUOTE"><begin quote>Help! My grandson Charlie, born 2/1/08 has come back with viral markers for CF. He will have a sweat test on 3/3....and I have told mom and dad to get genetic testing done too. Can anyone tell me early signs of CF? He is breastfed and nurses every 2 hrs....he seems to have alot of gas, and cries before he has a bm. His stools are orange in color and has small amount of mucus in it....I have no idea of what a "greesy stool" looks like. He does not have a salty taste, but his skin does seem very dry....his tummy even flakes dispite using baby lotion. I am so scared, and want to find out as much as I can. I have a thousand questions, and have no where to turn it seems. </end quote>
<br />
<br />
<br />I didn't want your post to get buried. I saw your blog and thought this would be a good place to answer you. I'm not sure what you mean by "viral markers" -- do you mean the newborn CF screening? If so, the newborn screen does pick up a lot of carriers as opposed to kids with CF. The sweat test is an easy test, we had to do it on my daughter four times to get good results. It is not invasive and it won't hurt him. I hope you get good answers.
<br />
<br />All your descriptions are really unclear to me.... they could be just plain normal baby stuff. But many CF babies are just plain normal for quite a while.
<br />
<br />Please feel free to ask your questions here. We all know how hard it is as you start this journey and how much information there is to process. Hang in there!!!!
 
M

MargaritaChic

New member
Cindy402,
I have a newborn that was diagnosed at 7 days old. Here is what I noticed before she was put on enzymes:
She had alot of gas.
She cried alot because her tummy hurt when she needed to poop.
She pooped often.
Her stools had a small amount of mucus in it.
She was very hungry.
 
M

MargaritaChic

New member
Cindy402,
I have a newborn that was diagnosed at 7 days old. Here is what I noticed before she was put on enzymes:
She had alot of gas.
She cried alot because her tummy hurt when she needed to poop.
She pooped often.
Her stools had a small amount of mucus in it.
She was very hungry.
 
M

MargaritaChic

New member
Cindy402,
I have a newborn that was diagnosed at 7 days old. Here is what I noticed before she was put on enzymes:
She had alot of gas.
She cried alot because her tummy hurt when she needed to poop.
She pooped often.
Her stools had a small amount of mucus in it.
She was very hungry.
 
M

MargaritaChic

New member
Cindy402,
I have a newborn that was diagnosed at 7 days old. Here is what I noticed before she was put on enzymes:
She had alot of gas.
She cried alot because her tummy hurt when she needed to poop.
She pooped often.
Her stools had a small amount of mucus in it.
She was very hungry.
 
M

MargaritaChic

New member
Cindy402,
<br />I have a newborn that was diagnosed at 7 days old. Here is what I noticed before she was put on enzymes:
<br />She had alot of gas.
<br />She cried alot because her tummy hurt when she needed to poop.
<br />She pooped often.
<br />Her stools had a small amount of mucus in it.
<br />She was very hungry.
 
J

JORDYSMOM

New member
I'm so glad you saw this post, Heather. I saw it, and then got so busy that I didn't have time to come back and pull it out.

Cindy402, welcome to the site. Let me say congratulations on your new grandson. You are very wise to suggest the DNA testing. Make sure they test for all known mutations.

You asked about symptoms. The gas, crying when having a bm, the greesy stools, etc. do sound like CF symptoms. Of course, they could be symptoms of other problems too, so that is not set in stone. I am so glad that you are searching for answers, and being proactive in your grandson's care. He is very lucky to have you for a grandma! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ask all of the questions you want. There is always someone here with an answer. Just take things one step at a time, and you will get the answers you need. In the mean time, please don't forget to enjoy that baby boy. The diagnosis, and other stuff will come in time, but Charlie will only be tiny for a short time. I am so partial to baby boys. I have three! <img src="i/expressions/face-icon-small-happy.gif" border="0"> (they aren't really babies anymore)

I hope you will keep us posted as you go along this journey.

Stacey
 
J

JORDYSMOM

New member
I'm so glad you saw this post, Heather. I saw it, and then got so busy that I didn't have time to come back and pull it out.

Cindy402, welcome to the site. Let me say congratulations on your new grandson. You are very wise to suggest the DNA testing. Make sure they test for all known mutations.

You asked about symptoms. The gas, crying when having a bm, the greesy stools, etc. do sound like CF symptoms. Of course, they could be symptoms of other problems too, so that is not set in stone. I am so glad that you are searching for answers, and being proactive in your grandson's care. He is very lucky to have you for a grandma! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ask all of the questions you want. There is always someone here with an answer. Just take things one step at a time, and you will get the answers you need. In the mean time, please don't forget to enjoy that baby boy. The diagnosis, and other stuff will come in time, but Charlie will only be tiny for a short time. I am so partial to baby boys. I have three! <img src="i/expressions/face-icon-small-happy.gif" border="0"> (they aren't really babies anymore)

I hope you will keep us posted as you go along this journey.

Stacey
 
J

JORDYSMOM

New member
I'm so glad you saw this post, Heather. I saw it, and then got so busy that I didn't have time to come back and pull it out.

Cindy402, welcome to the site. Let me say congratulations on your new grandson. You are very wise to suggest the DNA testing. Make sure they test for all known mutations.

You asked about symptoms. The gas, crying when having a bm, the greesy stools, etc. do sound like CF symptoms. Of course, they could be symptoms of other problems too, so that is not set in stone. I am so glad that you are searching for answers, and being proactive in your grandson's care. He is very lucky to have you for a grandma! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ask all of the questions you want. There is always someone here with an answer. Just take things one step at a time, and you will get the answers you need. In the mean time, please don't forget to enjoy that baby boy. The diagnosis, and other stuff will come in time, but Charlie will only be tiny for a short time. I am so partial to baby boys. I have three! <img src="i/expressions/face-icon-small-happy.gif" border="0"> (they aren't really babies anymore)

I hope you will keep us posted as you go along this journey.

Stacey
 
J

JORDYSMOM

New member
I'm so glad you saw this post, Heather. I saw it, and then got so busy that I didn't have time to come back and pull it out.

Cindy402, welcome to the site. Let me say congratulations on your new grandson. You are very wise to suggest the DNA testing. Make sure they test for all known mutations.

You asked about symptoms. The gas, crying when having a bm, the greesy stools, etc. do sound like CF symptoms. Of course, they could be symptoms of other problems too, so that is not set in stone. I am so glad that you are searching for answers, and being proactive in your grandson's care. He is very lucky to have you for a grandma! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ask all of the questions you want. There is always someone here with an answer. Just take things one step at a time, and you will get the answers you need. In the mean time, please don't forget to enjoy that baby boy. The diagnosis, and other stuff will come in time, but Charlie will only be tiny for a short time. I am so partial to baby boys. I have three! <img src="i/expressions/face-icon-small-happy.gif" border="0"> (they aren't really babies anymore)

I hope you will keep us posted as you go along this journey.

Stacey
 
J

JORDYSMOM

New member
I'm so glad you saw this post, Heather. I saw it, and then got so busy that I didn't have time to come back and pull it out.
<br />
<br />Cindy402, welcome to the site. Let me say congratulations on your new grandson. You are very wise to suggest the DNA testing. Make sure they test for all known mutations.
<br />
<br />You asked about symptoms. The gas, crying when having a bm, the greesy stools, etc. do sound like CF symptoms. Of course, they could be symptoms of other problems too, so that is not set in stone. I am so glad that you are searching for answers, and being proactive in your grandson's care. He is very lucky to have you for a grandma! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Ask all of the questions you want. There is always someone here with an answer. Just take things one step at a time, and you will get the answers you need. In the mean time, please don't forget to enjoy that baby boy. The diagnosis, and other stuff will come in time, but Charlie will only be tiny for a short time. I am so partial to baby boys. I have three! <img src="i/expressions/face-icon-small-happy.gif" border="0"> (they aren't really babies anymore)
<br />
<br />I hope you will keep us posted as you go along this journey.
<br />
<br />Stacey
 
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