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newborn daughter just diagnosed
- Thread starter StayStrong
- Start date
StayStrong
New member
Our doctors have been in contact with the closest CF clinic and have consulted them along the way but I am still not sure they are fully able to deal with this. They are testing her stool now to determine the needed enzymes, but she is eating only the most basic formula at this point and they will told me they will not introduce the enzymes until she is taking breast milk. I really appreciate you telling me to ask questions since I really have no idea what we are doing. I will contact the CF clinic myself this week just to make sure we are using the resource. Thanks!
StayStrong
New member
Our doctors have been in contact with the closest CF clinic and have consulted them along the way but I am still not sure they are fully able to deal with this. They are testing her stool now to determine the needed enzymes, but she is eating only the most basic formula at this point and they will told me they will not introduce the enzymes until she is taking breast milk. I really appreciate you telling me to ask questions since I really have no idea what we are doing. I will contact the CF clinic myself this week just to make sure we are using the resource. Thanks!
StayStrong
New member
Our doctors have been in contact with the closest CF clinic and have consulted them along the way but I am still not sure they are fully able to deal with this. They are testing her stool now to determine the needed enzymes, but she is eating only the most basic formula at this point and they will told me they will not introduce the enzymes until she is taking breast milk. I really appreciate you telling me to ask questions since I really have no idea what we are doing. I will contact the CF clinic myself this week just to make sure we are using the resource. Thanks!
Welcome to the forum and congrats on your daughter. My daughter was hospitalized at two weeks old due to an exacerbation (a term used to describe an increase in respiratory effort with cough and/or bacterial infection and/or inflammation). She's been doing well since starting airway clearance and other medications.
One this is certain, not all centers are the same. We switched from the center she attended upon diagnosis because their care didn't meet our expectations nor were they proactive. I'm not trying to make you feel that the center your doctors are conferring with isn't a good center...only that you have to be just as informed as the medical staff. I've gained a lot from this forum and you will too!!
Also note that being born with meconium ileus has absolutely no bearing on your daughter's future health in terms of disease severity...hopefully she'll begin to recover quickly and you'll find a routine that truly does just become a way of life. It's overwhelming at first, but you'll be okay!
One this is certain, not all centers are the same. We switched from the center she attended upon diagnosis because their care didn't meet our expectations nor were they proactive. I'm not trying to make you feel that the center your doctors are conferring with isn't a good center...only that you have to be just as informed as the medical staff. I've gained a lot from this forum and you will too!!
Also note that being born with meconium ileus has absolutely no bearing on your daughter's future health in terms of disease severity...hopefully she'll begin to recover quickly and you'll find a routine that truly does just become a way of life. It's overwhelming at first, but you'll be okay!
Welcome to the forum and congrats on your daughter. My daughter was hospitalized at two weeks old due to an exacerbation (a term used to describe an increase in respiratory effort with cough and/or bacterial infection and/or inflammation). She's been doing well since starting airway clearance and other medications.
One this is certain, not all centers are the same. We switched from the center she attended upon diagnosis because their care didn't meet our expectations nor were they proactive. I'm not trying to make you feel that the center your doctors are conferring with isn't a good center...only that you have to be just as informed as the medical staff. I've gained a lot from this forum and you will too!!
Also note that being born with meconium ileus has absolutely no bearing on your daughter's future health in terms of disease severity...hopefully she'll begin to recover quickly and you'll find a routine that truly does just become a way of life. It's overwhelming at first, but you'll be okay!
One this is certain, not all centers are the same. We switched from the center she attended upon diagnosis because their care didn't meet our expectations nor were they proactive. I'm not trying to make you feel that the center your doctors are conferring with isn't a good center...only that you have to be just as informed as the medical staff. I've gained a lot from this forum and you will too!!
Also note that being born with meconium ileus has absolutely no bearing on your daughter's future health in terms of disease severity...hopefully she'll begin to recover quickly and you'll find a routine that truly does just become a way of life. It's overwhelming at first, but you'll be okay!
Welcome to the forum and congrats on your daughter. My daughter was hospitalized at two weeks old due to an exacerbation (a term used to describe an increase in respiratory effort with cough and/or bacterial infection and/or inflammation). She's been doing well since starting airway clearance and other medications.
One this is certain, not all centers are the same. We switched from the center she attended upon diagnosis because their care didn't meet our expectations nor were they proactive. I'm not trying to make you feel that the center your doctors are conferring with isn't a good center...only that you have to be just as informed as the medical staff. I've gained a lot from this forum and you will too!!
Also note that being born with meconium ileus has absolutely no bearing on your daughter's future health in terms of disease severity...hopefully she'll begin to recover quickly and you'll find a routine that truly does just become a way of life. It's overwhelming at first, but you'll be okay!
One this is certain, not all centers are the same. We switched from the center she attended upon diagnosis because their care didn't meet our expectations nor were they proactive. I'm not trying to make you feel that the center your doctors are conferring with isn't a good center...only that you have to be just as informed as the medical staff. I've gained a lot from this forum and you will too!!
Also note that being born with meconium ileus has absolutely no bearing on your daughter's future health in terms of disease severity...hopefully she'll begin to recover quickly and you'll find a routine that truly does just become a way of life. It's overwhelming at first, but you'll be okay!
M
Mommafirst
Guest
Welcome to the place you never imagined you'd need. I'm sorry about the dx, but sending warm wishes of welcome to your new daughter. My daughter was also born with an obstruction that she cleared on her own after a barium enema. It took us 4 months to get a diagnosis, and by that time she was doing well and at home. It was soooo hard to wrap our brains around the idea of CF. Its really hard at first, but it does get easier.
My daughter is almost 6 and is doing great!!!
My daughter is almost 6 and is doing great!!!
M
Mommafirst
Guest
Welcome to the place you never imagined you'd need. I'm sorry about the dx, but sending warm wishes of welcome to your new daughter. My daughter was also born with an obstruction that she cleared on her own after a barium enema. It took us 4 months to get a diagnosis, and by that time she was doing well and at home. It was soooo hard to wrap our brains around the idea of CF. Its really hard at first, but it does get easier.
My daughter is almost 6 and is doing great!!!
My daughter is almost 6 and is doing great!!!
M
Mommafirst
Guest
Welcome to the place you never imagined you'd need. I'm sorry about the dx, but sending warm wishes of welcome to your new daughter. My daughter was also born with an obstruction that she cleared on her own after a barium enema. It took us 4 months to get a diagnosis, and by that time she was doing well and at home. It was soooo hard to wrap our brains around the idea of CF. Its really hard at first, but it does get easier.
My daughter is almost 6 and is doing great!!!
My daughter is almost 6 and is doing great!!!
meteoras69
New member
Congratulations on the birth of your daughter. I am so
sorry to hear about her diagnosis. Our son was born in May of 2009 and we were devastated to learn that he had CF when he was two weeks old. We were shocked and had no idea we were carriers. There is a lot to take in at first, but this forum is a great support. Our son is now 2 1/2 and is doing really well. Yes, it does take a lot of time and effort to keep him healthy, but literally everyone's response when they learn he has CF is, "he looks so healthy. He's just like any other kid. I would have never known." He is happy, active, and the joy of our lives. Best of luck with your new daughter and I hope you find this forum as supportive as our family has. It will get easier.
sorry to hear about her diagnosis. Our son was born in May of 2009 and we were devastated to learn that he had CF when he was two weeks old. We were shocked and had no idea we were carriers. There is a lot to take in at first, but this forum is a great support. Our son is now 2 1/2 and is doing really well. Yes, it does take a lot of time and effort to keep him healthy, but literally everyone's response when they learn he has CF is, "he looks so healthy. He's just like any other kid. I would have never known." He is happy, active, and the joy of our lives. Best of luck with your new daughter and I hope you find this forum as supportive as our family has. It will get easier.
meteoras69
New member
Congratulations on the birth of your daughter. I am so
sorry to hear about her diagnosis. Our son was born in May of 2009 and we were devastated to learn that he had CF when he was two weeks old. We were shocked and had no idea we were carriers. There is a lot to take in at first, but this forum is a great support. Our son is now 2 1/2 and is doing really well. Yes, it does take a lot of time and effort to keep him healthy, but literally everyone's response when they learn he has CF is, "he looks so healthy. He's just like any other kid. I would have never known." He is happy, active, and the joy of our lives. Best of luck with your new daughter and I hope you find this forum as supportive as our family has. It will get easier.
sorry to hear about her diagnosis. Our son was born in May of 2009 and we were devastated to learn that he had CF when he was two weeks old. We were shocked and had no idea we were carriers. There is a lot to take in at first, but this forum is a great support. Our son is now 2 1/2 and is doing really well. Yes, it does take a lot of time and effort to keep him healthy, but literally everyone's response when they learn he has CF is, "he looks so healthy. He's just like any other kid. I would have never known." He is happy, active, and the joy of our lives. Best of luck with your new daughter and I hope you find this forum as supportive as our family has. It will get easier.
meteoras69
New member
Congratulations on the birth of your daughter. I am so
sorry to hear about her diagnosis. Our son was born in May of 2009 and we were devastated to learn that he had CF when he was two weeks old. We were shocked and had no idea we were carriers. There is a lot to take in at first, but this forum is a great support. Our son is now 2 1/2 and is doing really well. Yes, it does take a lot of time and effort to keep him healthy, but literally everyone's response when they learn he has CF is, "he looks so healthy. He's just like any other kid. I would have never known." He is happy, active, and the joy of our lives. Best of luck with your new daughter and I hope you find this forum as supportive as our family has. It will get easier.
sorry to hear about her diagnosis. Our son was born in May of 2009 and we were devastated to learn that he had CF when he was two weeks old. We were shocked and had no idea we were carriers. There is a lot to take in at first, but this forum is a great support. Our son is now 2 1/2 and is doing really well. Yes, it does take a lot of time and effort to keep him healthy, but literally everyone's response when they learn he has CF is, "he looks so healthy. He's just like any other kid. I would have never known." He is happy, active, and the joy of our lives. Best of luck with your new daughter and I hope you find this forum as supportive as our family has. It will get easier.
Hi OP,
Our newborn daughter has also just been diagnosed at 2 weeks old, she's now a month old. My husband and I had no idea we were carriers, no family history - I can relate with the complete shock. It was caught as BC has just started newborn screening for CF in the past year and a half. Our daughter is homozygous Delta F508. We're just trying to get into a routine with the physio, enzymes, antibiotics, vitamins and salt. I'm with you on this learning curve!
Our newborn daughter has also just been diagnosed at 2 weeks old, she's now a month old. My husband and I had no idea we were carriers, no family history - I can relate with the complete shock. It was caught as BC has just started newborn screening for CF in the past year and a half. Our daughter is homozygous Delta F508. We're just trying to get into a routine with the physio, enzymes, antibiotics, vitamins and salt. I'm with you on this learning curve!
Hi OP,
Our newborn daughter has also just been diagnosed at 2 weeks old, she's now a month old. My husband and I had no idea we were carriers, no family history - I can relate with the complete shock. It was caught as BC has just started newborn screening for CF in the past year and a half. Our daughter is homozygous Delta F508. We're just trying to get into a routine with the physio, enzymes, antibiotics, vitamins and salt. I'm with you on this learning curve!
Our newborn daughter has also just been diagnosed at 2 weeks old, she's now a month old. My husband and I had no idea we were carriers, no family history - I can relate with the complete shock. It was caught as BC has just started newborn screening for CF in the past year and a half. Our daughter is homozygous Delta F508. We're just trying to get into a routine with the physio, enzymes, antibiotics, vitamins and salt. I'm with you on this learning curve!
Hi OP,
Our newborn daughter has also just been diagnosed at 2 weeks old, she's now a month old. My husband and I had no idea we were carriers, no family history - I can relate with the complete shock. It was caught as BC has just started newborn screening for CF in the past year and a half. Our daughter is homozygous Delta F508. We're just trying to get into a routine with the physio, enzymes, antibiotics, vitamins and salt. I'm with you on this learning curve!
Our newborn daughter has also just been diagnosed at 2 weeks old, she's now a month old. My husband and I had no idea we were carriers, no family history - I can relate with the complete shock. It was caught as BC has just started newborn screening for CF in the past year and a half. Our daughter is homozygous Delta F508. We're just trying to get into a routine with the physio, enzymes, antibiotics, vitamins and salt. I'm with you on this learning curve!
I am a bit concerned with them not moving a little faster regarding enzymes. It's my understanding that breast milk is much more easier to digest, whereas formula isn't. Even when DS was on pregistimil (predigested formula for CF tummies) briefly, he was on enzymes and we switched to regular infamil lipil after a couple weeks because he hated the other formula and would scream and clamp his jaws shut when we came near him with the bottle.
I would encourage them to get a move on in terms of the fecal fat testing, so if (and I'm assuming she is) she needs enzymes they can start adminstering them before/during feedings so she can digest the fats in the formula and start gaining weight, having relatively normal, non-malabsorbed stools and not having issues with blockages.
I would encourage them to get a move on in terms of the fecal fat testing, so if (and I'm assuming she is) she needs enzymes they can start adminstering them before/during feedings so she can digest the fats in the formula and start gaining weight, having relatively normal, non-malabsorbed stools and not having issues with blockages.
I am a bit concerned with them not moving a little faster regarding enzymes. It's my understanding that breast milk is much more easier to digest, whereas formula isn't. Even when DS was on pregistimil (predigested formula for CF tummies) briefly, he was on enzymes and we switched to regular infamil lipil after a couple weeks because he hated the other formula and would scream and clamp his jaws shut when we came near him with the bottle.
I would encourage them to get a move on in terms of the fecal fat testing, so if (and I'm assuming she is) she needs enzymes they can start adminstering them before/during feedings so she can digest the fats in the formula and start gaining weight, having relatively normal, non-malabsorbed stools and not having issues with blockages.
I would encourage them to get a move on in terms of the fecal fat testing, so if (and I'm assuming she is) she needs enzymes they can start adminstering them before/during feedings so she can digest the fats in the formula and start gaining weight, having relatively normal, non-malabsorbed stools and not having issues with blockages.
I am a bit concerned with them not moving a little faster regarding enzymes. It's my understanding that breast milk is much more easier to digest, whereas formula isn't. Even when DS was on pregistimil (predigested formula for CF tummies) briefly, he was on enzymes and we switched to regular infamil lipil after a couple weeks because he hated the other formula and would scream and clamp his jaws shut when we came near him with the bottle.
I would encourage them to get a move on in terms of the fecal fat testing, so if (and I'm assuming she is) she needs enzymes they can start adminstering them before/during feedings so she can digest the fats in the formula and start gaining weight, having relatively normal, non-malabsorbed stools and not having issues with blockages.
I would encourage them to get a move on in terms of the fecal fat testing, so if (and I'm assuming she is) she needs enzymes they can start adminstering them before/during feedings so she can digest the fats in the formula and start gaining weight, having relatively normal, non-malabsorbed stools and not having issues with blockages.