Hello. This is my first post. My son is 6 weeks and was diagnosed just after birth through newborn screening. We have two healthy sons also. We found out we were carriers during this pregnancy, but refused an amnio due to the risks. My son really has no symptoms. He was over 9 lbs at birth and continues to be in high percentiles. No oily stools, just fussy at times. Our other two had painful gas as infants. We have started vitamins and enzymes. Can snyone tell us what to expect? I have been researchinf CF and understand it, but it is just so hard to believe he has it when he looks so good!
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Newly diagnosed infant
- Thread starter petnurse
- Start date
Hello. This is my first post. My son is 6 weeks and was diagnosed just after birth through newborn screening. We have two healthy sons also. We found out we were carriers during this pregnancy, but refused an amnio due to the risks. My son really has no symptoms. He was over 9 lbs at birth and continues to be in high percentiles. No oily stools, just fussy at times. Our other two had painful gas as infants. We have started vitamins and enzymes. Can snyone tell us what to expect? I have been researchinf CF and understand it, but it is just so hard to believe he has it when he looks so good!
Hello. This is my first post. My son is 6 weeks and was diagnosed just after birth through newborn screening. We have two healthy sons also. We found out we were carriers during this pregnancy, but refused an amnio due to the risks. My son really has no symptoms. He was over 9 lbs at birth and continues to be in high percentiles. No oily stools, just fussy at times. Our other two had painful gas as infants. We have started vitamins and enzymes. Can snyone tell us what to expect? I have been researchinf CF and understand it, but it is just so hard to believe he has it when he looks so good!
Hello. This is my first post. My son is 6 weeks and was diagnosed just after birth through newborn screening. We have two healthy sons also. We found out we were carriers during this pregnancy, but refused an amnio due to the risks. My son really has no symptoms. He was over 9 lbs at birth and continues to be in high percentiles. No oily stools, just fussy at times. Our other two had painful gas as infants. We have started vitamins and enzymes. Can snyone tell us what to expect? I have been researchinf CF and understand it, but it is just so hard to believe he has it when he looks so good!
Hello. This is my first post. My son is 6 weeks and was diagnosed just after birth through newborn screening. We have two healthy sons also. We found out we were carriers during this pregnancy, but refused an amnio due to the risks. My son really has no symptoms. He was over 9 lbs at birth and continues to be in high percentiles. No oily stools, just fussy at times. Our other two had painful gas as infants. We have started vitamins and enzymes. Can snyone tell us what to expect? I have been researchinf CF and understand it, but it is just so hard to believe he has it when he looks so good!
This is a really hard thing to answer. My experience has not be horrible so far with CF. My son was diagnosed prenatally with an amnio and has always gained weight well with the use of enzymes. He is 4 yrs old, 5 in Dec, and has not been hospitalized yet. He does have problems with stinky poop and greesy stools. We have done airway clearance since he was 3 days old and have continued to follow EVERY recommendation that the clinic gives us. It is really hard when they are babies because there is so much extra that you need to do with them and you are already exhausted. I know others with CF children that have not been so lucky, having feeding tubes, surgeries, trouble with weight gain, constant infections and such. I really believe that it is a crap shoot. My son has two pretty severe mutations of CF and has remained healthy. The advice I have gotten from other CF parents is to encourage hand washins, exercise and absolutely no smoke exposure (including people who would have it on their clothing). Hope this helps. Although it would be nice to have a black and white answer it is always grey with cf
This is a really hard thing to answer. My experience has not be horrible so far with CF. My son was diagnosed prenatally with an amnio and has always gained weight well with the use of enzymes. He is 4 yrs old, 5 in Dec, and has not been hospitalized yet. He does have problems with stinky poop and greesy stools. We have done airway clearance since he was 3 days old and have continued to follow EVERY recommendation that the clinic gives us. It is really hard when they are babies because there is so much extra that you need to do with them and you are already exhausted. I know others with CF children that have not been so lucky, having feeding tubes, surgeries, trouble with weight gain, constant infections and such. I really believe that it is a crap shoot. My son has two pretty severe mutations of CF and has remained healthy. The advice I have gotten from other CF parents is to encourage hand washins, exercise and absolutely no smoke exposure (including people who would have it on their clothing). Hope this helps. Although it would be nice to have a black and white answer it is always grey with cf
This is a really hard thing to answer. My experience has not be horrible so far with CF. My son was diagnosed prenatally with an amnio and has always gained weight well with the use of enzymes. He is 4 yrs old, 5 in Dec, and has not been hospitalized yet. He does have problems with stinky poop and greesy stools. We have done airway clearance since he was 3 days old and have continued to follow EVERY recommendation that the clinic gives us. It is really hard when they are babies because there is so much extra that you need to do with them and you are already exhausted. I know others with CF children that have not been so lucky, having feeding tubes, surgeries, trouble with weight gain, constant infections and such. I really believe that it is a crap shoot. My son has two pretty severe mutations of CF and has remained healthy. The advice I have gotten from other CF parents is to encourage hand washins, exercise and absolutely no smoke exposure (including people who would have it on their clothing). Hope this helps. Although it would be nice to have a black and white answer it is always grey with cf
This is a really hard thing to answer. My experience has not be horrible so far with CF. My son was diagnosed prenatally with an amnio and has always gained weight well with the use of enzymes. He is 4 yrs old, 5 in Dec, and has not been hospitalized yet. He does have problems with stinky poop and greesy stools. We have done airway clearance since he was 3 days old and have continued to follow EVERY recommendation that the clinic gives us. It is really hard when they are babies because there is so much extra that you need to do with them and you are already exhausted. I know others with CF children that have not been so lucky, having feeding tubes, surgeries, trouble with weight gain, constant infections and such. I really believe that it is a crap shoot. My son has two pretty severe mutations of CF and has remained healthy. The advice I have gotten from other CF parents is to encourage hand washins, exercise and absolutely no smoke exposure (including people who would have it on their clothing). Hope this helps. Although it would be nice to have a black and white answer it is always grey with cf
This is a really hard thing to answer. My experience has not be horrible so far with CF. My son was diagnosed prenatally with an amnio and has always gained weight well with the use of enzymes. He is 4 yrs old, 5 in Dec, and has not been hospitalized yet. He does have problems with stinky poop and greesy stools. We have done airway clearance since he was 3 days old and have continued to follow EVERY recommendation that the clinic gives us. It is really hard when they are babies because there is so much extra that you need to do with them and you are already exhausted. I know others with CF children that have not been so lucky, having feeding tubes, surgeries, trouble with weight gain, constant infections and such. I really believe that it is a crap shoot. My son has two pretty severe mutations of CF and has remained healthy. The advice I have gotten from other CF parents is to encourage hand washins, exercise and absolutely no smoke exposure (including people who would have it on their clothing). Hope this helps. Although it would be nice to have a black and white answer it is always grey with cf
ctalbott0609
New member
My daughter was diagnosed at 4 weeks. I know what you are going through, and our kids are just 2 weeks apart in age. I wish I could give you an answer but I can't <img src="i/expressions/face-icon-small-sad.gif" border="0"> I can offer a shoulder though, so please feel free to message me if you need anything ((hugs)) I know how how scared you are, but I swear it gets better.
ctalbott0609
New member
My daughter was diagnosed at 4 weeks. I know what you are going through, and our kids are just 2 weeks apart in age. I wish I could give you an answer but I can't <img src="i/expressions/face-icon-small-sad.gif" border="0"> I can offer a shoulder though, so please feel free to message me if you need anything ((hugs)) I know how how scared you are, but I swear it gets better.
ctalbott0609
New member
My daughter was diagnosed at 4 weeks. I know what you are going through, and our kids are just 2 weeks apart in age. I wish I could give you an answer but I can't <img src="i/expressions/face-icon-small-sad.gif" border="0"> I can offer a shoulder though, so please feel free to message me if you need anything ((hugs)) I know how how scared you are, but I swear it gets better.
ctalbott0609
New member
My daughter was diagnosed at 4 weeks. I know what you are going through, and our kids are just 2 weeks apart in age. I wish I could give you an answer but I can't <img src="i/expressions/face-icon-small-sad.gif" border="0"> I can offer a shoulder though, so please feel free to message me if you need anything ((hugs)) I know how how scared you are, but I swear it gets better.
ctalbott0609
New member
My daughter was diagnosed at 4 weeks. I know what you are going through, and our kids are just 2 weeks apart in age. I wish I could give you an answer but I can't <img src="i/expressions/face-icon-small-sad.gif" border="0"> I can offer a shoulder though, so please feel free to message me if you need anything ((hugs)) I know how how scared you are, but I swear it gets better.
marisalynn
New member
Hello. I was wondering if they did the stool test to check for pancreatic sufficiency. When my brother and I were younger, we took enzymes only to find out later that we actually did have pancreatic sufficiency, so we probably didn't even have to be on them. I am not aware of any adverse effects of taking enzymes if they aren't necessarily needed, but I am just thinking of the cost and the inconvenience of taking them. I would just mention it to the doctor.
I think it is a good sign that there aren't really any symptoms, and my advice is to stick to the regimen that the doctor gives you, and treat him like a normal baby. Also, it can be difficult for siblings of children with CF to deal with the parents giving more attention to the sick child. Be sensitive to their feelings.
Marisa RN, 22 w/cf
I think it is a good sign that there aren't really any symptoms, and my advice is to stick to the regimen that the doctor gives you, and treat him like a normal baby. Also, it can be difficult for siblings of children with CF to deal with the parents giving more attention to the sick child. Be sensitive to their feelings.
Marisa RN, 22 w/cf
marisalynn
New member
Hello. I was wondering if they did the stool test to check for pancreatic sufficiency. When my brother and I were younger, we took enzymes only to find out later that we actually did have pancreatic sufficiency, so we probably didn't even have to be on them. I am not aware of any adverse effects of taking enzymes if they aren't necessarily needed, but I am just thinking of the cost and the inconvenience of taking them. I would just mention it to the doctor.
I think it is a good sign that there aren't really any symptoms, and my advice is to stick to the regimen that the doctor gives you, and treat him like a normal baby. Also, it can be difficult for siblings of children with CF to deal with the parents giving more attention to the sick child. Be sensitive to their feelings.
Marisa RN, 22 w/cf
I think it is a good sign that there aren't really any symptoms, and my advice is to stick to the regimen that the doctor gives you, and treat him like a normal baby. Also, it can be difficult for siblings of children with CF to deal with the parents giving more attention to the sick child. Be sensitive to their feelings.
Marisa RN, 22 w/cf
marisalynn
New member
Hello. I was wondering if they did the stool test to check for pancreatic sufficiency. When my brother and I were younger, we took enzymes only to find out later that we actually did have pancreatic sufficiency, so we probably didn't even have to be on them. I am not aware of any adverse effects of taking enzymes if they aren't necessarily needed, but I am just thinking of the cost and the inconvenience of taking them. I would just mention it to the doctor.
I think it is a good sign that there aren't really any symptoms, and my advice is to stick to the regimen that the doctor gives you, and treat him like a normal baby. Also, it can be difficult for siblings of children with CF to deal with the parents giving more attention to the sick child. Be sensitive to their feelings.
Marisa RN, 22 w/cf
I think it is a good sign that there aren't really any symptoms, and my advice is to stick to the regimen that the doctor gives you, and treat him like a normal baby. Also, it can be difficult for siblings of children with CF to deal with the parents giving more attention to the sick child. Be sensitive to their feelings.
Marisa RN, 22 w/cf
marisalynn
New member
Hello. I was wondering if they did the stool test to check for pancreatic sufficiency. When my brother and I were younger, we took enzymes only to find out later that we actually did have pancreatic sufficiency, so we probably didn't even have to be on them. I am not aware of any adverse effects of taking enzymes if they aren't necessarily needed, but I am just thinking of the cost and the inconvenience of taking them. I would just mention it to the doctor.
I think it is a good sign that there aren't really any symptoms, and my advice is to stick to the regimen that the doctor gives you, and treat him like a normal baby. Also, it can be difficult for siblings of children with CF to deal with the parents giving more attention to the sick child. Be sensitive to their feelings.
Marisa RN, 22 w/cf
I think it is a good sign that there aren't really any symptoms, and my advice is to stick to the regimen that the doctor gives you, and treat him like a normal baby. Also, it can be difficult for siblings of children with CF to deal with the parents giving more attention to the sick child. Be sensitive to their feelings.
Marisa RN, 22 w/cf
marisalynn
New member
Hello. I was wondering if they did the stool test to check for pancreatic sufficiency. When my brother and I were younger, we took enzymes only to find out later that we actually did have pancreatic sufficiency, so we probably didn't even have to be on them. I am not aware of any adverse effects of taking enzymes if they aren't necessarily needed, but I am just thinking of the cost and the inconvenience of taking them. I would just mention it to the doctor.
<br />I think it is a good sign that there aren't really any symptoms, and my advice is to stick to the regimen that the doctor gives you, and treat him like a normal baby. Also, it can be difficult for siblings of children with CF to deal with the parents giving more attention to the sick child. Be sensitive to their feelings.
<br />Marisa RN, 22 w/cf
<br />I think it is a good sign that there aren't really any symptoms, and my advice is to stick to the regimen that the doctor gives you, and treat him like a normal baby. Also, it can be difficult for siblings of children with CF to deal with the parents giving more attention to the sick child. Be sensitive to their feelings.
<br />Marisa RN, 22 w/cf