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!
thespecialone
New member
first on all sorry to hear about your baby my daughter also has cf we found out though new born screening she was actualy the first baby born diagnost in missouri though new born screening so i can understand what your going though you feel very lost and confused but to anwser your question you really dont have much symtoms to look for they dont start showing sign till there more active and even then they act like any other healthy child if i could give you any advice it would to be just stick to the treatments and stay positive good luck and pray for a cure!!
thespecialone
New member
first on all sorry to hear about your baby my daughter also has cf we found out though new born screening she was actualy the first baby born diagnost in missouri though new born screening so i can understand what your going though you feel very lost and confused but to anwser your question you really dont have much symtoms to look for they dont start showing sign till there more active and even then they act like any other healthy child if i could give you any advice it would to be just stick to the treatments and stay positive good luck and pray for a cure!!
thespecialone
New member
first on all sorry to hear about your baby my daughter also has cf we found out though new born screening she was actualy the first baby born diagnost in missouri though new born screening so i can understand what your going though you feel very lost and confused but to anwser your question you really dont have much symtoms to look for they dont start showing sign till there more active and even then they act like any other healthy child if i could give you any advice it would to be just stick to the treatments and stay positive good luck and pray for a cure!!
thespecialone
New member
first on all sorry to hear about your baby my daughter also has cf we found out though new born screening she was actualy the first baby born diagnost in missouri though new born screening so i can understand what your going though you feel very lost and confused but to anwser your question you really dont have much symtoms to look for they dont start showing sign till there more active and even then they act like any other healthy child if i could give you any advice it would to be just stick to the treatments and stay positive good luck and pray for a cure!!
thespecialone
New member
first on all sorry to hear about your baby my daughter also has cf we found out though new born screening she was actualy the first baby born diagnost in missouri though new born screening so i can understand what your going though you feel very lost and confused but to anwser your question you really dont have much symtoms to look for they dont start showing sign till there more active and even then they act like any other healthy child if i could give you any advice it would to be just stick to the treatments and stay positive good luck and pray for a cure!!
Hi catherine,
You have found a great place for support and information on CF. Are you taking your baby to an accredidated CF center for his routine care? This is an important thing to do. You can find out if the CF care center is accredidated if you go to www.cff.org. That is the Cystic Fibrosis Foundation's website. Not all info about CF is accurate but the Cystic Fibrosis Foundation's website has reliable info about CF and clinical trials. For me and our family we have the motto "Knowledge is power" We feel empowered by learning about CF for our daughter's well-being. I have learned most general doctors are not up to date on CF so I need to educate myself for my daughter to get the care she needs. Every CF center that is accredidated has it's own philosophy; most important is to PREVENT lung damage and maintain healthy lungs for as long as possible until a cure is found. So this includes doing Chest PT(clapping on the back) or VEST airway clearance(when your child is older) to prevent infections in the lung. I am glad your baby is doing well. Right now nutrition is so important for your little baby; so keep up the good work, It is good for CF babys to have extra chub on them if at all possible.
TAke care and ask away with your questions.
You have found a great place for support and information on CF. Are you taking your baby to an accredidated CF center for his routine care? This is an important thing to do. You can find out if the CF care center is accredidated if you go to www.cff.org. That is the Cystic Fibrosis Foundation's website. Not all info about CF is accurate but the Cystic Fibrosis Foundation's website has reliable info about CF and clinical trials. For me and our family we have the motto "Knowledge is power" We feel empowered by learning about CF for our daughter's well-being. I have learned most general doctors are not up to date on CF so I need to educate myself for my daughter to get the care she needs. Every CF center that is accredidated has it's own philosophy; most important is to PREVENT lung damage and maintain healthy lungs for as long as possible until a cure is found. So this includes doing Chest PT(clapping on the back) or VEST airway clearance(when your child is older) to prevent infections in the lung. I am glad your baby is doing well. Right now nutrition is so important for your little baby; so keep up the good work, It is good for CF babys to have extra chub on them if at all possible.
TAke care and ask away with your questions.
Hi catherine,
You have found a great place for support and information on CF. Are you taking your baby to an accredidated CF center for his routine care? This is an important thing to do. You can find out if the CF care center is accredidated if you go to www.cff.org. That is the Cystic Fibrosis Foundation's website. Not all info about CF is accurate but the Cystic Fibrosis Foundation's website has reliable info about CF and clinical trials. For me and our family we have the motto "Knowledge is power" We feel empowered by learning about CF for our daughter's well-being. I have learned most general doctors are not up to date on CF so I need to educate myself for my daughter to get the care she needs. Every CF center that is accredidated has it's own philosophy; most important is to PREVENT lung damage and maintain healthy lungs for as long as possible until a cure is found. So this includes doing Chest PT(clapping on the back) or VEST airway clearance(when your child is older) to prevent infections in the lung. I am glad your baby is doing well. Right now nutrition is so important for your little baby; so keep up the good work, It is good for CF babys to have extra chub on them if at all possible.
TAke care and ask away with your questions.
You have found a great place for support and information on CF. Are you taking your baby to an accredidated CF center for his routine care? This is an important thing to do. You can find out if the CF care center is accredidated if you go to www.cff.org. That is the Cystic Fibrosis Foundation's website. Not all info about CF is accurate but the Cystic Fibrosis Foundation's website has reliable info about CF and clinical trials. For me and our family we have the motto "Knowledge is power" We feel empowered by learning about CF for our daughter's well-being. I have learned most general doctors are not up to date on CF so I need to educate myself for my daughter to get the care she needs. Every CF center that is accredidated has it's own philosophy; most important is to PREVENT lung damage and maintain healthy lungs for as long as possible until a cure is found. So this includes doing Chest PT(clapping on the back) or VEST airway clearance(when your child is older) to prevent infections in the lung. I am glad your baby is doing well. Right now nutrition is so important for your little baby; so keep up the good work, It is good for CF babys to have extra chub on them if at all possible.
TAke care and ask away with your questions.
Hi catherine,
You have found a great place for support and information on CF. Are you taking your baby to an accredidated CF center for his routine care? This is an important thing to do. You can find out if the CF care center is accredidated if you go to www.cff.org. That is the Cystic Fibrosis Foundation's website. Not all info about CF is accurate but the Cystic Fibrosis Foundation's website has reliable info about CF and clinical trials. For me and our family we have the motto "Knowledge is power" We feel empowered by learning about CF for our daughter's well-being. I have learned most general doctors are not up to date on CF so I need to educate myself for my daughter to get the care she needs. Every CF center that is accredidated has it's own philosophy; most important is to PREVENT lung damage and maintain healthy lungs for as long as possible until a cure is found. So this includes doing Chest PT(clapping on the back) or VEST airway clearance(when your child is older) to prevent infections in the lung. I am glad your baby is doing well. Right now nutrition is so important for your little baby; so keep up the good work, It is good for CF babys to have extra chub on them if at all possible.
TAke care and ask away with your questions.
You have found a great place for support and information on CF. Are you taking your baby to an accredidated CF center for his routine care? This is an important thing to do. You can find out if the CF care center is accredidated if you go to www.cff.org. That is the Cystic Fibrosis Foundation's website. Not all info about CF is accurate but the Cystic Fibrosis Foundation's website has reliable info about CF and clinical trials. For me and our family we have the motto "Knowledge is power" We feel empowered by learning about CF for our daughter's well-being. I have learned most general doctors are not up to date on CF so I need to educate myself for my daughter to get the care she needs. Every CF center that is accredidated has it's own philosophy; most important is to PREVENT lung damage and maintain healthy lungs for as long as possible until a cure is found. So this includes doing Chest PT(clapping on the back) or VEST airway clearance(when your child is older) to prevent infections in the lung. I am glad your baby is doing well. Right now nutrition is so important for your little baby; so keep up the good work, It is good for CF babys to have extra chub on them if at all possible.
TAke care and ask away with your questions.
Hi catherine,
You have found a great place for support and information on CF. Are you taking your baby to an accredidated CF center for his routine care? This is an important thing to do. You can find out if the CF care center is accredidated if you go to www.cff.org. That is the Cystic Fibrosis Foundation's website. Not all info about CF is accurate but the Cystic Fibrosis Foundation's website has reliable info about CF and clinical trials. For me and our family we have the motto "Knowledge is power" We feel empowered by learning about CF for our daughter's well-being. I have learned most general doctors are not up to date on CF so I need to educate myself for my daughter to get the care she needs. Every CF center that is accredidated has it's own philosophy; most important is to PREVENT lung damage and maintain healthy lungs for as long as possible until a cure is found. So this includes doing Chest PT(clapping on the back) or VEST airway clearance(when your child is older) to prevent infections in the lung. I am glad your baby is doing well. Right now nutrition is so important for your little baby; so keep up the good work, It is good for CF babys to have extra chub on them if at all possible.
TAke care and ask away with your questions.
You have found a great place for support and information on CF. Are you taking your baby to an accredidated CF center for his routine care? This is an important thing to do. You can find out if the CF care center is accredidated if you go to www.cff.org. That is the Cystic Fibrosis Foundation's website. Not all info about CF is accurate but the Cystic Fibrosis Foundation's website has reliable info about CF and clinical trials. For me and our family we have the motto "Knowledge is power" We feel empowered by learning about CF for our daughter's well-being. I have learned most general doctors are not up to date on CF so I need to educate myself for my daughter to get the care she needs. Every CF center that is accredidated has it's own philosophy; most important is to PREVENT lung damage and maintain healthy lungs for as long as possible until a cure is found. So this includes doing Chest PT(clapping on the back) or VEST airway clearance(when your child is older) to prevent infections in the lung. I am glad your baby is doing well. Right now nutrition is so important for your little baby; so keep up the good work, It is good for CF babys to have extra chub on them if at all possible.
TAke care and ask away with your questions.
Hi catherine,
You have found a great place for support and information on CF. Are you taking your baby to an accredidated CF center for his routine care? This is an important thing to do. You can find out if the CF care center is accredidated if you go to www.cff.org. That is the Cystic Fibrosis Foundation's website. Not all info about CF is accurate but the Cystic Fibrosis Foundation's website has reliable info about CF and clinical trials. For me and our family we have the motto "Knowledge is power" We feel empowered by learning about CF for our daughter's well-being. I have learned most general doctors are not up to date on CF so I need to educate myself for my daughter to get the care she needs. Every CF center that is accredidated has it's own philosophy; most important is to PREVENT lung damage and maintain healthy lungs for as long as possible until a cure is found. So this includes doing Chest PT(clapping on the back) or VEST airway clearance(when your child is older) to prevent infections in the lung. I am glad your baby is doing well. Right now nutrition is so important for your little baby; so keep up the good work, It is good for CF babys to have extra chub on them if at all possible.
TAke care and ask away with your questions.
You have found a great place for support and information on CF. Are you taking your baby to an accredidated CF center for his routine care? This is an important thing to do. You can find out if the CF care center is accredidated if you go to www.cff.org. That is the Cystic Fibrosis Foundation's website. Not all info about CF is accurate but the Cystic Fibrosis Foundation's website has reliable info about CF and clinical trials. For me and our family we have the motto "Knowledge is power" We feel empowered by learning about CF for our daughter's well-being. I have learned most general doctors are not up to date on CF so I need to educate myself for my daughter to get the care she needs. Every CF center that is accredidated has it's own philosophy; most important is to PREVENT lung damage and maintain healthy lungs for as long as possible until a cure is found. So this includes doing Chest PT(clapping on the back) or VEST airway clearance(when your child is older) to prevent infections in the lung. I am glad your baby is doing well. Right now nutrition is so important for your little baby; so keep up the good work, It is good for CF babys to have extra chub on them if at all possible.
TAke care and ask away with your questions.
K
kaylee04cassidy08
Guest
Hello Catherine. My daughter with CF is exactly one year older than your son with CF! She was born 6/26/08. She was diagnosed prenatally, but I think that the feelings we have at the time of dx are all very similar. It is so difficult to look at a perfect baby with all ten fingers and toes, beautiful eyes and smile and to think that there is something so horrible brewing inside.
The thing is that even though we can not imagine or predict exactly what path or how CF will play out in each of our lives, we know that it will take front and center stage at times, but for the most part it is just another twist in the story of our life. I do not want to minimize the effect CF has had on our life. It really is a big part of it, but it has not destroyed our life. We really are a normal family and we do normal things. I often think of CF as an "interruption" in our life. Each day we interrupt our day to do breathing treatments. We interrupt meals to take enzymes. And occasionally we interrupt life altogether and go to the hospital. But we still live our life. We go camping. We go to the park and the zoo.
At first it seemed unreal. The words Cystic Fibrosis rang in my head constantly for months. I have now accepted CF as part of our life, but I still have a long way to go. I hope you find comfort in knowing that others have been there before. It does get better with time.
Welcome to a road less traveled. Make it a beautiful one.
The thing is that even though we can not imagine or predict exactly what path or how CF will play out in each of our lives, we know that it will take front and center stage at times, but for the most part it is just another twist in the story of our life. I do not want to minimize the effect CF has had on our life. It really is a big part of it, but it has not destroyed our life. We really are a normal family and we do normal things. I often think of CF as an "interruption" in our life. Each day we interrupt our day to do breathing treatments. We interrupt meals to take enzymes. And occasionally we interrupt life altogether and go to the hospital. But we still live our life. We go camping. We go to the park and the zoo.
At first it seemed unreal. The words Cystic Fibrosis rang in my head constantly for months. I have now accepted CF as part of our life, but I still have a long way to go. I hope you find comfort in knowing that others have been there before. It does get better with time.
Welcome to a road less traveled. Make it a beautiful one.
K
kaylee04cassidy08
Guest
Hello Catherine. My daughter with CF is exactly one year older than your son with CF! She was born 6/26/08. She was diagnosed prenatally, but I think that the feelings we have at the time of dx are all very similar. It is so difficult to look at a perfect baby with all ten fingers and toes, beautiful eyes and smile and to think that there is something so horrible brewing inside.
The thing is that even though we can not imagine or predict exactly what path or how CF will play out in each of our lives, we know that it will take front and center stage at times, but for the most part it is just another twist in the story of our life. I do not want to minimize the effect CF has had on our life. It really is a big part of it, but it has not destroyed our life. We really are a normal family and we do normal things. I often think of CF as an "interruption" in our life. Each day we interrupt our day to do breathing treatments. We interrupt meals to take enzymes. And occasionally we interrupt life altogether and go to the hospital. But we still live our life. We go camping. We go to the park and the zoo.
At first it seemed unreal. The words Cystic Fibrosis rang in my head constantly for months. I have now accepted CF as part of our life, but I still have a long way to go. I hope you find comfort in knowing that others have been there before. It does get better with time.
Welcome to a road less traveled. Make it a beautiful one.
The thing is that even though we can not imagine or predict exactly what path or how CF will play out in each of our lives, we know that it will take front and center stage at times, but for the most part it is just another twist in the story of our life. I do not want to minimize the effect CF has had on our life. It really is a big part of it, but it has not destroyed our life. We really are a normal family and we do normal things. I often think of CF as an "interruption" in our life. Each day we interrupt our day to do breathing treatments. We interrupt meals to take enzymes. And occasionally we interrupt life altogether and go to the hospital. But we still live our life. We go camping. We go to the park and the zoo.
At first it seemed unreal. The words Cystic Fibrosis rang in my head constantly for months. I have now accepted CF as part of our life, but I still have a long way to go. I hope you find comfort in knowing that others have been there before. It does get better with time.
Welcome to a road less traveled. Make it a beautiful one.
K
kaylee04cassidy08
Guest
Hello Catherine. My daughter with CF is exactly one year older than your son with CF! She was born 6/26/08. She was diagnosed prenatally, but I think that the feelings we have at the time of dx are all very similar. It is so difficult to look at a perfect baby with all ten fingers and toes, beautiful eyes and smile and to think that there is something so horrible brewing inside.
The thing is that even though we can not imagine or predict exactly what path or how CF will play out in each of our lives, we know that it will take front and center stage at times, but for the most part it is just another twist in the story of our life. I do not want to minimize the effect CF has had on our life. It really is a big part of it, but it has not destroyed our life. We really are a normal family and we do normal things. I often think of CF as an "interruption" in our life. Each day we interrupt our day to do breathing treatments. We interrupt meals to take enzymes. And occasionally we interrupt life altogether and go to the hospital. But we still live our life. We go camping. We go to the park and the zoo.
At first it seemed unreal. The words Cystic Fibrosis rang in my head constantly for months. I have now accepted CF as part of our life, but I still have a long way to go. I hope you find comfort in knowing that others have been there before. It does get better with time.
Welcome to a road less traveled. Make it a beautiful one.
The thing is that even though we can not imagine or predict exactly what path or how CF will play out in each of our lives, we know that it will take front and center stage at times, but for the most part it is just another twist in the story of our life. I do not want to minimize the effect CF has had on our life. It really is a big part of it, but it has not destroyed our life. We really are a normal family and we do normal things. I often think of CF as an "interruption" in our life. Each day we interrupt our day to do breathing treatments. We interrupt meals to take enzymes. And occasionally we interrupt life altogether and go to the hospital. But we still live our life. We go camping. We go to the park and the zoo.
At first it seemed unreal. The words Cystic Fibrosis rang in my head constantly for months. I have now accepted CF as part of our life, but I still have a long way to go. I hope you find comfort in knowing that others have been there before. It does get better with time.
Welcome to a road less traveled. Make it a beautiful one.
K
kaylee04cassidy08
Guest
Hello Catherine. My daughter with CF is exactly one year older than your son with CF! She was born 6/26/08. She was diagnosed prenatally, but I think that the feelings we have at the time of dx are all very similar. It is so difficult to look at a perfect baby with all ten fingers and toes, beautiful eyes and smile and to think that there is something so horrible brewing inside.
The thing is that even though we can not imagine or predict exactly what path or how CF will play out in each of our lives, we know that it will take front and center stage at times, but for the most part it is just another twist in the story of our life. I do not want to minimize the effect CF has had on our life. It really is a big part of it, but it has not destroyed our life. We really are a normal family and we do normal things. I often think of CF as an "interruption" in our life. Each day we interrupt our day to do breathing treatments. We interrupt meals to take enzymes. And occasionally we interrupt life altogether and go to the hospital. But we still live our life. We go camping. We go to the park and the zoo.
At first it seemed unreal. The words Cystic Fibrosis rang in my head constantly for months. I have now accepted CF as part of our life, but I still have a long way to go. I hope you find comfort in knowing that others have been there before. It does get better with time.
Welcome to a road less traveled. Make it a beautiful one.
The thing is that even though we can not imagine or predict exactly what path or how CF will play out in each of our lives, we know that it will take front and center stage at times, but for the most part it is just another twist in the story of our life. I do not want to minimize the effect CF has had on our life. It really is a big part of it, but it has not destroyed our life. We really are a normal family and we do normal things. I often think of CF as an "interruption" in our life. Each day we interrupt our day to do breathing treatments. We interrupt meals to take enzymes. And occasionally we interrupt life altogether and go to the hospital. But we still live our life. We go camping. We go to the park and the zoo.
At first it seemed unreal. The words Cystic Fibrosis rang in my head constantly for months. I have now accepted CF as part of our life, but I still have a long way to go. I hope you find comfort in knowing that others have been there before. It does get better with time.
Welcome to a road less traveled. Make it a beautiful one.
K
kaylee04cassidy08
Guest
Hello Catherine. My daughter with CF is exactly one year older than your son with CF! She was born 6/26/08. She was diagnosed prenatally, but I think that the feelings we have at the time of dx are all very similar. It is so difficult to look at a perfect baby with all ten fingers and toes, beautiful eyes and smile and to think that there is something so horrible brewing inside.
<br />
<br />The thing is that even though we can not imagine or predict exactly what path or how CF will play out in each of our lives, we know that it will take front and center stage at times, but for the most part it is just another twist in the story of our life. I do not want to minimize the effect CF has had on our life. It really is a big part of it, but it has not destroyed our life. We really are a normal family and we do normal things. I often think of CF as an "interruption" in our life. Each day we interrupt our day to do breathing treatments. We interrupt meals to take enzymes. And occasionally we interrupt life altogether and go to the hospital. But we still live our life. We go camping. We go to the park and the zoo.
<br />
<br />At first it seemed unreal. The words Cystic Fibrosis rang in my head constantly for months. I have now accepted CF as part of our life, but I still have a long way to go. I hope you find comfort in knowing that others have been there before. It does get better with time.
<br />
<br />Welcome to a road less traveled. Make it a beautiful one.
<br />
<br />The thing is that even though we can not imagine or predict exactly what path or how CF will play out in each of our lives, we know that it will take front and center stage at times, but for the most part it is just another twist in the story of our life. I do not want to minimize the effect CF has had on our life. It really is a big part of it, but it has not destroyed our life. We really are a normal family and we do normal things. I often think of CF as an "interruption" in our life. Each day we interrupt our day to do breathing treatments. We interrupt meals to take enzymes. And occasionally we interrupt life altogether and go to the hospital. But we still live our life. We go camping. We go to the park and the zoo.
<br />
<br />At first it seemed unreal. The words Cystic Fibrosis rang in my head constantly for months. I have now accepted CF as part of our life, but I still have a long way to go. I hope you find comfort in knowing that others have been there before. It does get better with time.
<br />
<br />Welcome to a road less traveled. Make it a beautiful one.