My infant daughter was just diagnosed with CF. Both my husband and I are f508 carriers and genetic screening showed she is a homozygous carrier. She was in the hospital for the past week due to a cough - which we are now wondering if it was viral related as she had eye discharge prior to the cough. They cultured her upper airway and found normal bacterial flora - no pseudomonas. She was on IV antibiotics and is now on home treatment for 2 additional weeks, plus chest percussions, enzymes, and vitamins. Does anyone else have experience with such an early diagnosis? I think the only reason we have a CF diagnosis is because we are both carriers and CA recently implemented testing in its newborn screening. My other question is regarding prognosis...I would love to hear that others have had an infant diagnosed this early or close to this early and they have gone on to live for years...please share your experiences with me!!!
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3 week old with CF
- Thread starter kitomd21
- Start date
My infant daughter was just diagnosed with CF. Both my husband and I are f508 carriers and genetic screening showed she is a homozygous carrier. She was in the hospital for the past week due to a cough - which we are now wondering if it was viral related as she had eye discharge prior to the cough. They cultured her upper airway and found normal bacterial flora - no pseudomonas. She was on IV antibiotics and is now on home treatment for 2 additional weeks, plus chest percussions, enzymes, and vitamins. Does anyone else have experience with such an early diagnosis? I think the only reason we have a CF diagnosis is because we are both carriers and CA recently implemented testing in its newborn screening. My other question is regarding prognosis...I would love to hear that others have had an infant diagnosed this early or close to this early and they have gone on to live for years...please share your experiences with me!!!
My infant daughter was just diagnosed with CF. Both my husband and I are f508 carriers and genetic screening showed she is a homozygous carrier. She was in the hospital for the past week due to a cough - which we are now wondering if it was viral related as she had eye discharge prior to the cough. They cultured her upper airway and found normal bacterial flora - no pseudomonas. She was on IV antibiotics and is now on home treatment for 2 additional weeks, plus chest percussions, enzymes, and vitamins. Does anyone else have experience with such an early diagnosis? I think the only reason we have a CF diagnosis is because we are both carriers and CA recently implemented testing in its newborn screening. My other question is regarding prognosis...I would love to hear that others have had an infant diagnosed this early or close to this early and they have gone on to live for years...please share your experiences with me!!!
My infant daughter was just diagnosed with CF. Both my husband and I are f508 carriers and genetic screening showed she is a homozygous carrier. She was in the hospital for the past week due to a cough - which we are now wondering if it was viral related as she had eye discharge prior to the cough. They cultured her upper airway and found normal bacterial flora - no pseudomonas. She was on IV antibiotics and is now on home treatment for 2 additional weeks, plus chest percussions, enzymes, and vitamins. Does anyone else have experience with such an early diagnosis? I think the only reason we have a CF diagnosis is because we are both carriers and CA recently implemented testing in its newborn screening. My other question is regarding prognosis...I would love to hear that others have had an infant diagnosed this early or close to this early and they have gone on to live for years...please share your experiences with me!!!
My infant daughter was just diagnosed with CF. Both my husband and I are f508 carriers and genetic screening showed she is a homozygous carrier. She was in the hospital for the past week due to a cough - which we are now wondering if it was viral related as she had eye discharge prior to the cough. They cultured her upper airway and found normal bacterial flora - no pseudomonas. She was on IV antibiotics and is now on home treatment for 2 additional weeks, plus chest percussions, enzymes, and vitamins. Does anyone else have experience with such an early diagnosis? I think the only reason we have a CF diagnosis is because we are both carriers and CA recently implemented testing in its newborn screening. My other question is regarding prognosis...I would love to hear that others have had an infant diagnosed this early or close to this early and they have gone on to live for years...please share your experiences with me!!!
Hi there,
welcome to this site. It is a great resource of support and information for CF. Many members on this site have had their children diagnosed as you describe because of early detection with newborn screening. In fact, my daughter was diagnosed with CF BEFORE she was born , long story, but my husband and I found out we were carriers for CF when I was pregnant with her, and a further amniocentesis revealed in fact my daughter has CF. Prevention and early intervention is key in CF. Sounds like your baby is getting the right intervention to keep her lungs healthy and good nutrition. My daughter had a rocky start in the beginning, and but she is now 5 1/2 with CF and will start kindergarten at our public school in the fall. The outlook for people with CF is improving every year. A reliable source of info for CF is www.cff.org. It is the Cystic Fibrosis Foundation's website. Please ask questions about anything. Someone here has been there and done that<img src="">
welcome to this site. It is a great resource of support and information for CF. Many members on this site have had their children diagnosed as you describe because of early detection with newborn screening. In fact, my daughter was diagnosed with CF BEFORE she was born , long story, but my husband and I found out we were carriers for CF when I was pregnant with her, and a further amniocentesis revealed in fact my daughter has CF. Prevention and early intervention is key in CF. Sounds like your baby is getting the right intervention to keep her lungs healthy and good nutrition. My daughter had a rocky start in the beginning, and but she is now 5 1/2 with CF and will start kindergarten at our public school in the fall. The outlook for people with CF is improving every year. A reliable source of info for CF is www.cff.org. It is the Cystic Fibrosis Foundation's website. Please ask questions about anything. Someone here has been there and done that<img src="">
Hi there,
welcome to this site. It is a great resource of support and information for CF. Many members on this site have had their children diagnosed as you describe because of early detection with newborn screening. In fact, my daughter was diagnosed with CF BEFORE she was born , long story, but my husband and I found out we were carriers for CF when I was pregnant with her, and a further amniocentesis revealed in fact my daughter has CF. Prevention and early intervention is key in CF. Sounds like your baby is getting the right intervention to keep her lungs healthy and good nutrition. My daughter had a rocky start in the beginning, and but she is now 5 1/2 with CF and will start kindergarten at our public school in the fall. The outlook for people with CF is improving every year. A reliable source of info for CF is www.cff.org. It is the Cystic Fibrosis Foundation's website. Please ask questions about anything. Someone here has been there and done that<img src="">
welcome to this site. It is a great resource of support and information for CF. Many members on this site have had their children diagnosed as you describe because of early detection with newborn screening. In fact, my daughter was diagnosed with CF BEFORE she was born , long story, but my husband and I found out we were carriers for CF when I was pregnant with her, and a further amniocentesis revealed in fact my daughter has CF. Prevention and early intervention is key in CF. Sounds like your baby is getting the right intervention to keep her lungs healthy and good nutrition. My daughter had a rocky start in the beginning, and but she is now 5 1/2 with CF and will start kindergarten at our public school in the fall. The outlook for people with CF is improving every year. A reliable source of info for CF is www.cff.org. It is the Cystic Fibrosis Foundation's website. Please ask questions about anything. Someone here has been there and done that<img src="">
Hi there,
welcome to this site. It is a great resource of support and information for CF. Many members on this site have had their children diagnosed as you describe because of early detection with newborn screening. In fact, my daughter was diagnosed with CF BEFORE she was born , long story, but my husband and I found out we were carriers for CF when I was pregnant with her, and a further amniocentesis revealed in fact my daughter has CF. Prevention and early intervention is key in CF. Sounds like your baby is getting the right intervention to keep her lungs healthy and good nutrition. My daughter had a rocky start in the beginning, and but she is now 5 1/2 with CF and will start kindergarten at our public school in the fall. The outlook for people with CF is improving every year. A reliable source of info for CF is www.cff.org. It is the Cystic Fibrosis Foundation's website. Please ask questions about anything. Someone here has been there and done that<img src="">
welcome to this site. It is a great resource of support and information for CF. Many members on this site have had their children diagnosed as you describe because of early detection with newborn screening. In fact, my daughter was diagnosed with CF BEFORE she was born , long story, but my husband and I found out we were carriers for CF when I was pregnant with her, and a further amniocentesis revealed in fact my daughter has CF. Prevention and early intervention is key in CF. Sounds like your baby is getting the right intervention to keep her lungs healthy and good nutrition. My daughter had a rocky start in the beginning, and but she is now 5 1/2 with CF and will start kindergarten at our public school in the fall. The outlook for people with CF is improving every year. A reliable source of info for CF is www.cff.org. It is the Cystic Fibrosis Foundation's website. Please ask questions about anything. Someone here has been there and done that<img src="">
Hi there,
welcome to this site. It is a great resource of support and information for CF. Many members on this site have had their children diagnosed as you describe because of early detection with newborn screening. In fact, my daughter was diagnosed with CF BEFORE she was born , long story, but my husband and I found out we were carriers for CF when I was pregnant with her, and a further amniocentesis revealed in fact my daughter has CF. Prevention and early intervention is key in CF. Sounds like your baby is getting the right intervention to keep her lungs healthy and good nutrition. My daughter had a rocky start in the beginning, and but she is now 5 1/2 with CF and will start kindergarten at our public school in the fall. The outlook for people with CF is improving every year. A reliable source of info for CF is www.cff.org. It is the Cystic Fibrosis Foundation's website. Please ask questions about anything. Someone here has been there and done that<img src="">
welcome to this site. It is a great resource of support and information for CF. Many members on this site have had their children diagnosed as you describe because of early detection with newborn screening. In fact, my daughter was diagnosed with CF BEFORE she was born , long story, but my husband and I found out we were carriers for CF when I was pregnant with her, and a further amniocentesis revealed in fact my daughter has CF. Prevention and early intervention is key in CF. Sounds like your baby is getting the right intervention to keep her lungs healthy and good nutrition. My daughter had a rocky start in the beginning, and but she is now 5 1/2 with CF and will start kindergarten at our public school in the fall. The outlook for people with CF is improving every year. A reliable source of info for CF is www.cff.org. It is the Cystic Fibrosis Foundation's website. Please ask questions about anything. Someone here has been there and done that<img src="">
Hi there,
welcome to this site. It is a great resource of support and information for CF. Many members on this site have had their children diagnosed as you describe because of early detection with newborn screening. In fact, my daughter was diagnosed with CF BEFORE she was born , long story, but my husband and I found out we were carriers for CF when I was pregnant with her, and a further amniocentesis revealed in fact my daughter has CF. Prevention and early intervention is key in CF. Sounds like your baby is getting the right intervention to keep her lungs healthy and good nutrition. My daughter had a rocky start in the beginning, and but she is now 5 1/2 with CF and will start kindergarten at our public school in the fall. The outlook for people with CF is improving every year. A reliable source of info for CF is www.cff.org. It is the Cystic Fibrosis Foundation's website. Please ask questions about anything. Someone here has been there and done that<img src="">
welcome to this site. It is a great resource of support and information for CF. Many members on this site have had their children diagnosed as you describe because of early detection with newborn screening. In fact, my daughter was diagnosed with CF BEFORE she was born , long story, but my husband and I found out we were carriers for CF when I was pregnant with her, and a further amniocentesis revealed in fact my daughter has CF. Prevention and early intervention is key in CF. Sounds like your baby is getting the right intervention to keep her lungs healthy and good nutrition. My daughter had a rocky start in the beginning, and but she is now 5 1/2 with CF and will start kindergarten at our public school in the fall. The outlook for people with CF is improving every year. A reliable source of info for CF is www.cff.org. It is the Cystic Fibrosis Foundation's website. Please ask questions about anything. Someone here has been there and done that<img src="">
M
mneville
Guest
Hi. My son was diagnosed at 8 days old thanks to newborn screening. We are also both carriers of the Delta. He will be 4 in September and is doing great. He started enzymes at diagnosis and his weight is fantastic- actually he's a bit overweight. He started CPT right away and at 16 months he got the VEST. He now wears that for one hour daily.
His major issue is his sinuses right now. We try alot to prevent sinus infections but he has still required two surgeries. Although the diagnosis is so hard in the beginning, it will become more normal to you as the time passes.
We had a second child, thanks to IVF and PGD who is free of CF. Best of luck and enjoy your new baby!
Megan,mom to Aidan 3 with CF and Gavin,1 no CF
His major issue is his sinuses right now. We try alot to prevent sinus infections but he has still required two surgeries. Although the diagnosis is so hard in the beginning, it will become more normal to you as the time passes.
We had a second child, thanks to IVF and PGD who is free of CF. Best of luck and enjoy your new baby!
Megan,mom to Aidan 3 with CF and Gavin,1 no CF
M
mneville
Guest
Hi. My son was diagnosed at 8 days old thanks to newborn screening. We are also both carriers of the Delta. He will be 4 in September and is doing great. He started enzymes at diagnosis and his weight is fantastic- actually he's a bit overweight. He started CPT right away and at 16 months he got the VEST. He now wears that for one hour daily.
His major issue is his sinuses right now. We try alot to prevent sinus infections but he has still required two surgeries. Although the diagnosis is so hard in the beginning, it will become more normal to you as the time passes.
We had a second child, thanks to IVF and PGD who is free of CF. Best of luck and enjoy your new baby!
Megan,mom to Aidan 3 with CF and Gavin,1 no CF
His major issue is his sinuses right now. We try alot to prevent sinus infections but he has still required two surgeries. Although the diagnosis is so hard in the beginning, it will become more normal to you as the time passes.
We had a second child, thanks to IVF and PGD who is free of CF. Best of luck and enjoy your new baby!
Megan,mom to Aidan 3 with CF and Gavin,1 no CF
M
mneville
Guest
Hi. My son was diagnosed at 8 days old thanks to newborn screening. We are also both carriers of the Delta. He will be 4 in September and is doing great. He started enzymes at diagnosis and his weight is fantastic- actually he's a bit overweight. He started CPT right away and at 16 months he got the VEST. He now wears that for one hour daily.
His major issue is his sinuses right now. We try alot to prevent sinus infections but he has still required two surgeries. Although the diagnosis is so hard in the beginning, it will become more normal to you as the time passes.
We had a second child, thanks to IVF and PGD who is free of CF. Best of luck and enjoy your new baby!
Megan,mom to Aidan 3 with CF and Gavin,1 no CF
His major issue is his sinuses right now. We try alot to prevent sinus infections but he has still required two surgeries. Although the diagnosis is so hard in the beginning, it will become more normal to you as the time passes.
We had a second child, thanks to IVF and PGD who is free of CF. Best of luck and enjoy your new baby!
Megan,mom to Aidan 3 with CF and Gavin,1 no CF
M
mneville
Guest
Hi. My son was diagnosed at 8 days old thanks to newborn screening. We are also both carriers of the Delta. He will be 4 in September and is doing great. He started enzymes at diagnosis and his weight is fantastic- actually he's a bit overweight. He started CPT right away and at 16 months he got the VEST. He now wears that for one hour daily.
His major issue is his sinuses right now. We try alot to prevent sinus infections but he has still required two surgeries. Although the diagnosis is so hard in the beginning, it will become more normal to you as the time passes.
We had a second child, thanks to IVF and PGD who is free of CF. Best of luck and enjoy your new baby!
Megan,mom to Aidan 3 with CF and Gavin,1 no CF
His major issue is his sinuses right now. We try alot to prevent sinus infections but he has still required two surgeries. Although the diagnosis is so hard in the beginning, it will become more normal to you as the time passes.
We had a second child, thanks to IVF and PGD who is free of CF. Best of luck and enjoy your new baby!
Megan,mom to Aidan 3 with CF and Gavin,1 no CF
M
mneville
Guest
Hi. My son was diagnosed at 8 days old thanks to newborn screening. We are also both carriers of the Delta. He will be 4 in September and is doing great. He started enzymes at diagnosis and his weight is fantastic- actually he's a bit overweight. He started CPT right away and at 16 months he got the VEST. He now wears that for one hour daily.
<br />
<br />His major issue is his sinuses right now. We try alot to prevent sinus infections but he has still required two surgeries. Although the diagnosis is so hard in the beginning, it will become more normal to you as the time passes.
<br />
<br />We had a second child, thanks to IVF and PGD who is free of CF. Best of luck and enjoy your new baby!
<br />
<br />Megan,mom to Aidan 3 with CF and Gavin,1 no CF
<br />
<br />His major issue is his sinuses right now. We try alot to prevent sinus infections but he has still required two surgeries. Although the diagnosis is so hard in the beginning, it will become more normal to you as the time passes.
<br />
<br />We had a second child, thanks to IVF and PGD who is free of CF. Best of luck and enjoy your new baby!
<br />
<br />Megan,mom to Aidan 3 with CF and Gavin,1 no CF
thefrogprincess
New member
I can't give you any help with having a CF baby that young. But I would like to say that I was diagnosed at 6 weeks (there was family hostory) and that was almost 27 years ago, before all these wonderful drugs and treatments we have now. I had as close to a normal childhood as a CFer can get. I road my bike, went to school, stayed at friends houses, went to camp, swam, played sports. You name it and I did it.
I have only been on IV antibiotics twice. I have only spent 2 nights in the hospital and that was when I had my appendix removed, not for CF. Your baby has a better chance than I did of having a long healthy life, and look how far I have come!
And lastly, welcome! This is a great place for ideas, advice, and support.
I have only been on IV antibiotics twice. I have only spent 2 nights in the hospital and that was when I had my appendix removed, not for CF. Your baby has a better chance than I did of having a long healthy life, and look how far I have come!
And lastly, welcome! This is a great place for ideas, advice, and support.
thefrogprincess
New member
I can't give you any help with having a CF baby that young. But I would like to say that I was diagnosed at 6 weeks (there was family hostory) and that was almost 27 years ago, before all these wonderful drugs and treatments we have now. I had as close to a normal childhood as a CFer can get. I road my bike, went to school, stayed at friends houses, went to camp, swam, played sports. You name it and I did it.
I have only been on IV antibiotics twice. I have only spent 2 nights in the hospital and that was when I had my appendix removed, not for CF. Your baby has a better chance than I did of having a long healthy life, and look how far I have come!
And lastly, welcome! This is a great place for ideas, advice, and support.
I have only been on IV antibiotics twice. I have only spent 2 nights in the hospital and that was when I had my appendix removed, not for CF. Your baby has a better chance than I did of having a long healthy life, and look how far I have come!
And lastly, welcome! This is a great place for ideas, advice, and support.
thefrogprincess
New member
I can't give you any help with having a CF baby that young. But I would like to say that I was diagnosed at 6 weeks (there was family hostory) and that was almost 27 years ago, before all these wonderful drugs and treatments we have now. I had as close to a normal childhood as a CFer can get. I road my bike, went to school, stayed at friends houses, went to camp, swam, played sports. You name it and I did it.
I have only been on IV antibiotics twice. I have only spent 2 nights in the hospital and that was when I had my appendix removed, not for CF. Your baby has a better chance than I did of having a long healthy life, and look how far I have come!
And lastly, welcome! This is a great place for ideas, advice, and support.
I have only been on IV antibiotics twice. I have only spent 2 nights in the hospital and that was when I had my appendix removed, not for CF. Your baby has a better chance than I did of having a long healthy life, and look how far I have come!
And lastly, welcome! This is a great place for ideas, advice, and support.
thefrogprincess
New member
I can't give you any help with having a CF baby that young. But I would like to say that I was diagnosed at 6 weeks (there was family hostory) and that was almost 27 years ago, before all these wonderful drugs and treatments we have now. I had as close to a normal childhood as a CFer can get. I road my bike, went to school, stayed at friends houses, went to camp, swam, played sports. You name it and I did it.
I have only been on IV antibiotics twice. I have only spent 2 nights in the hospital and that was when I had my appendix removed, not for CF. Your baby has a better chance than I did of having a long healthy life, and look how far I have come!
And lastly, welcome! This is a great place for ideas, advice, and support.
I have only been on IV antibiotics twice. I have only spent 2 nights in the hospital and that was when I had my appendix removed, not for CF. Your baby has a better chance than I did of having a long healthy life, and look how far I have come!
And lastly, welcome! This is a great place for ideas, advice, and support.
thefrogprincess
New member
I can't give you any help with having a CF baby that young. But I would like to say that I was diagnosed at 6 weeks (there was family hostory) and that was almost 27 years ago, before all these wonderful drugs and treatments we have now. I had as close to a normal childhood as a CFer can get. I road my bike, went to school, stayed at friends houses, went to camp, swam, played sports. You name it and I did it.
<br />
<br />I have only been on IV antibiotics twice. I have only spent 2 nights in the hospital and that was when I had my appendix removed, not for CF. Your baby has a better chance than I did of having a long healthy life, and look how far I have come!
<br />
<br />And lastly, welcome! This is a great place for ideas, advice, and support.
<br />
<br />I have only been on IV antibiotics twice. I have only spent 2 nights in the hospital and that was when I had my appendix removed, not for CF. Your baby has a better chance than I did of having a long healthy life, and look how far I have come!
<br />
<br />And lastly, welcome! This is a great place for ideas, advice, and support.