momtocrazel
New member
Jeanne: i sent you a pvt msg too.
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3wk old Diagnosed 11/15
- Thread starter imagine04
- Start date
MIZZVIKVIK
New member
My son will be 3 weeks on thursday.. He was born 10/28.. I was told that his newborn screen came back abnormal and he needs to be tested for CF.. I feel like there not telling me everything.. Its frusterating to me.. I seen on postings that people were told there newborn screens came back positive in the hospital and like me, I was told it was abnormal.. Is there a difference or do the dr's just phrase it differently... I was a wreck about a week ago until I found this site... I am still waiting to have our sweat test.. its scheduled the 6th of december which I might have to reschedule because they messed up the times when they scheduled the appointment.. I am going to try to make it though.. I was just wondering if anyone knows why our screen was abnormal and others were positive in the newborn screen.. I do know a postive newborn screen still needs a sweat test done to diagnose but its just all too confusing to me
MIZZVIKVIK
New member
My son will be 3 weeks on thursday.. He was born 10/28.. I was told that his newborn screen came back abnormal and he needs to be tested for CF.. I feel like there not telling me everything.. Its frusterating to me.. I seen on postings that people were told there newborn screens came back positive in the hospital and like me, I was told it was abnormal.. Is there a difference or do the dr's just phrase it differently... I was a wreck about a week ago until I found this site... I am still waiting to have our sweat test.. its scheduled the 6th of december which I might have to reschedule because they messed up the times when they scheduled the appointment.. I am going to try to make it though.. I was just wondering if anyone knows why our screen was abnormal and others were positive in the newborn screen.. I do know a postive newborn screen still needs a sweat test done to diagnose but its just all too confusing to me
MIZZVIKVIK
New member
My son will be 3 weeks on thursday.. He was born 10/28.. I was told that his newborn screen came back abnormal and he needs to be tested for CF.. I feel like there not telling me everything.. Its frusterating to me.. I seen on postings that people were told there newborn screens came back positive in the hospital and like me, I was told it was abnormal.. Is there a difference or do the dr's just phrase it differently... I was a wreck about a week ago until I found this site... I am still waiting to have our sweat test.. its scheduled the 6th of december which I might have to reschedule because they messed up the times when they scheduled the appointment.. I am going to try to make it though.. I was just wondering if anyone knows why our screen was abnormal and others were positive in the newborn screen.. I do know a postive newborn screen still needs a sweat test done to diagnose but its just all too confusing to me
meteoras69
New member
Jeanne,
Congratulations on the birth of your wonderful baby boy, Parker. I am so sorry to hear of his diagnosis, and imagine you must be experiencing grief, fear, shock, and a mixture of many other emotions right now. I can relate, as my son, Aidan, was diagnosed at three weeks of age following an abnormal newborn screening result in June of 2009. I had heard of CF but had never met anyone living with this condition, and never dreamed of this happening in my family. While no one can predict the future, I can tell you that over time you <i>will</i> feel less overwhelmed. This website has been a wonderful source of support and information for me, as I hope it can be for you. My son is 18 months old now, and is doing very well. Aidan has been hospitalized one time at seven months of age, but otherwise has been pretty healthy. He is a happy and joyful child who is the light of our lives, as I'm sure Parker is for you. Please return to this site for support and with questions. My thoughts are with you and your family during this time. Best wishes to you, Parker, and the rest of your family as you navigate the days ahead.
--Ginger
Congratulations on the birth of your wonderful baby boy, Parker. I am so sorry to hear of his diagnosis, and imagine you must be experiencing grief, fear, shock, and a mixture of many other emotions right now. I can relate, as my son, Aidan, was diagnosed at three weeks of age following an abnormal newborn screening result in June of 2009. I had heard of CF but had never met anyone living with this condition, and never dreamed of this happening in my family. While no one can predict the future, I can tell you that over time you <i>will</i> feel less overwhelmed. This website has been a wonderful source of support and information for me, as I hope it can be for you. My son is 18 months old now, and is doing very well. Aidan has been hospitalized one time at seven months of age, but otherwise has been pretty healthy. He is a happy and joyful child who is the light of our lives, as I'm sure Parker is for you. Please return to this site for support and with questions. My thoughts are with you and your family during this time. Best wishes to you, Parker, and the rest of your family as you navigate the days ahead.
--Ginger
meteoras69
New member
Jeanne,
Congratulations on the birth of your wonderful baby boy, Parker. I am so sorry to hear of his diagnosis, and imagine you must be experiencing grief, fear, shock, and a mixture of many other emotions right now. I can relate, as my son, Aidan, was diagnosed at three weeks of age following an abnormal newborn screening result in June of 2009. I had heard of CF but had never met anyone living with this condition, and never dreamed of this happening in my family. While no one can predict the future, I can tell you that over time you <i>will</i> feel less overwhelmed. This website has been a wonderful source of support and information for me, as I hope it can be for you. My son is 18 months old now, and is doing very well. Aidan has been hospitalized one time at seven months of age, but otherwise has been pretty healthy. He is a happy and joyful child who is the light of our lives, as I'm sure Parker is for you. Please return to this site for support and with questions. My thoughts are with you and your family during this time. Best wishes to you, Parker, and the rest of your family as you navigate the days ahead.
--Ginger
Congratulations on the birth of your wonderful baby boy, Parker. I am so sorry to hear of his diagnosis, and imagine you must be experiencing grief, fear, shock, and a mixture of many other emotions right now. I can relate, as my son, Aidan, was diagnosed at three weeks of age following an abnormal newborn screening result in June of 2009. I had heard of CF but had never met anyone living with this condition, and never dreamed of this happening in my family. While no one can predict the future, I can tell you that over time you <i>will</i> feel less overwhelmed. This website has been a wonderful source of support and information for me, as I hope it can be for you. My son is 18 months old now, and is doing very well. Aidan has been hospitalized one time at seven months of age, but otherwise has been pretty healthy. He is a happy and joyful child who is the light of our lives, as I'm sure Parker is for you. Please return to this site for support and with questions. My thoughts are with you and your family during this time. Best wishes to you, Parker, and the rest of your family as you navigate the days ahead.
--Ginger
meteoras69
New member
Jeanne,
<br />
<br />Congratulations on the birth of your wonderful baby boy, Parker. I am so sorry to hear of his diagnosis, and imagine you must be experiencing grief, fear, shock, and a mixture of many other emotions right now. I can relate, as my son, Aidan, was diagnosed at three weeks of age following an abnormal newborn screening result in June of 2009. I had heard of CF but had never met anyone living with this condition, and never dreamed of this happening in my family. While no one can predict the future, I can tell you that over time you <i>will</i> feel less overwhelmed. This website has been a wonderful source of support and information for me, as I hope it can be for you. My son is 18 months old now, and is doing very well. Aidan has been hospitalized one time at seven months of age, but otherwise has been pretty healthy. He is a happy and joyful child who is the light of our lives, as I'm sure Parker is for you. Please return to this site for support and with questions. My thoughts are with you and your family during this time. Best wishes to you, Parker, and the rest of your family as you navigate the days ahead.
<br />
<br />--Ginger
<br />
<br />Congratulations on the birth of your wonderful baby boy, Parker. I am so sorry to hear of his diagnosis, and imagine you must be experiencing grief, fear, shock, and a mixture of many other emotions right now. I can relate, as my son, Aidan, was diagnosed at three weeks of age following an abnormal newborn screening result in June of 2009. I had heard of CF but had never met anyone living with this condition, and never dreamed of this happening in my family. While no one can predict the future, I can tell you that over time you <i>will</i> feel less overwhelmed. This website has been a wonderful source of support and information for me, as I hope it can be for you. My son is 18 months old now, and is doing very well. Aidan has been hospitalized one time at seven months of age, but otherwise has been pretty healthy. He is a happy and joyful child who is the light of our lives, as I'm sure Parker is for you. Please return to this site for support and with questions. My thoughts are with you and your family during this time. Best wishes to you, Parker, and the rest of your family as you navigate the days ahead.
<br />
<br />--Ginger
meteoras69
New member
Jeanne,
Congratulations on the birth of your wonderful baby boy, Parker. I am so sorry to hear of his diagnosis, and imagine you must be experiencing grief, fear, shock, and a mixture of many other emotions right now. I can relate, as my son, Aidan, was diagnosed at three weeks of age following an abnormal newborn screening result in June of 2009. I had heard of CF but had never met anyone living with this condition, and never dreamed of this happening in my family. While no one can predict the future, I can tell you that over time you <i>will</i> feel less overwhelmed. This website has been a wonderful source of support and information for me, as I hope it can be for you. My son is 18 months old now, and is doing very well. Aidan has been hospitalized one time at seven months of age, but otherwise has been pretty healthy. He is a happy and joyful child who is the light of our lives, as I'm sure Parker is for you. Please return to this site for support and with questions. My thoughts are with you and your family during this time. Best wishes to you, Parker, and the rest of your family as you navigate the days ahead.
--Ginger
Congratulations on the birth of your wonderful baby boy, Parker. I am so sorry to hear of his diagnosis, and imagine you must be experiencing grief, fear, shock, and a mixture of many other emotions right now. I can relate, as my son, Aidan, was diagnosed at three weeks of age following an abnormal newborn screening result in June of 2009. I had heard of CF but had never met anyone living with this condition, and never dreamed of this happening in my family. While no one can predict the future, I can tell you that over time you <i>will</i> feel less overwhelmed. This website has been a wonderful source of support and information for me, as I hope it can be for you. My son is 18 months old now, and is doing very well. Aidan has been hospitalized one time at seven months of age, but otherwise has been pretty healthy. He is a happy and joyful child who is the light of our lives, as I'm sure Parker is for you. Please return to this site for support and with questions. My thoughts are with you and your family during this time. Best wishes to you, Parker, and the rest of your family as you navigate the days ahead.
--Ginger
meteoras69
New member
Jeanne,
Congratulations on the birth of your wonderful baby boy, Parker. I am so sorry to hear of his diagnosis, and imagine you must be experiencing grief, fear, shock, and a mixture of many other emotions right now. I can relate, as my son, Aidan, was diagnosed at three weeks of age following an abnormal newborn screening result in June of 2009. I had heard of CF but had never met anyone living with this condition, and never dreamed of this happening in my family. While no one can predict the future, I can tell you that over time you <i>will</i> feel less overwhelmed. This website has been a wonderful source of support and information for me, as I hope it can be for you. My son is 18 months old now, and is doing very well. Aidan has been hospitalized one time at seven months of age, but otherwise has been pretty healthy. He is a happy and joyful child who is the light of our lives, as I'm sure Parker is for you. Please return to this site for support and with questions. My thoughts are with you and your family during this time. Best wishes to you, Parker, and the rest of your family as you navigate the days ahead.
--Ginger
Congratulations on the birth of your wonderful baby boy, Parker. I am so sorry to hear of his diagnosis, and imagine you must be experiencing grief, fear, shock, and a mixture of many other emotions right now. I can relate, as my son, Aidan, was diagnosed at three weeks of age following an abnormal newborn screening result in June of 2009. I had heard of CF but had never met anyone living with this condition, and never dreamed of this happening in my family. While no one can predict the future, I can tell you that over time you <i>will</i> feel less overwhelmed. This website has been a wonderful source of support and information for me, as I hope it can be for you. My son is 18 months old now, and is doing very well. Aidan has been hospitalized one time at seven months of age, but otherwise has been pretty healthy. He is a happy and joyful child who is the light of our lives, as I'm sure Parker is for you. Please return to this site for support and with questions. My thoughts are with you and your family during this time. Best wishes to you, Parker, and the rest of your family as you navigate the days ahead.
--Ginger
meteoras69
New member
Jeanne,
<br />
<br />Congratulations on the birth of your wonderful baby boy, Parker. I am so sorry to hear of his diagnosis, and imagine you must be experiencing grief, fear, shock, and a mixture of many other emotions right now. I can relate, as my son, Aidan, was diagnosed at three weeks of age following an abnormal newborn screening result in June of 2009. I had heard of CF but had never met anyone living with this condition, and never dreamed of this happening in my family. While no one can predict the future, I can tell you that over time you <i>will</i> feel less overwhelmed. This website has been a wonderful source of support and information for me, as I hope it can be for you. My son is 18 months old now, and is doing very well. Aidan has been hospitalized one time at seven months of age, but otherwise has been pretty healthy. He is a happy and joyful child who is the light of our lives, as I'm sure Parker is for you. Please return to this site for support and with questions. My thoughts are with you and your family during this time. Best wishes to you, Parker, and the rest of your family as you navigate the days ahead.
<br />
<br />--Ginger
<br />
<br />Congratulations on the birth of your wonderful baby boy, Parker. I am so sorry to hear of his diagnosis, and imagine you must be experiencing grief, fear, shock, and a mixture of many other emotions right now. I can relate, as my son, Aidan, was diagnosed at three weeks of age following an abnormal newborn screening result in June of 2009. I had heard of CF but had never met anyone living with this condition, and never dreamed of this happening in my family. While no one can predict the future, I can tell you that over time you <i>will</i> feel less overwhelmed. This website has been a wonderful source of support and information for me, as I hope it can be for you. My son is 18 months old now, and is doing very well. Aidan has been hospitalized one time at seven months of age, but otherwise has been pretty healthy. He is a happy and joyful child who is the light of our lives, as I'm sure Parker is for you. Please return to this site for support and with questions. My thoughts are with you and your family during this time. Best wishes to you, Parker, and the rest of your family as you navigate the days ahead.
<br />
<br />--Ginger
momofcfprincess
New member
I think support means everything. I just found this website about a month ago and love it!!!
I think it is so good to talk to others that are in our "same boat". I am also apart of a CF Moms group that meets once a month. I have learned Alot from that and have gained alot of CF knowledge from here lately. Its great because the doctors only have so much time each visit and there is alot of things to know to take care of someone with CF. Blessings
I think it is so good to talk to others that are in our "same boat". I am also apart of a CF Moms group that meets once a month. I have learned Alot from that and have gained alot of CF knowledge from here lately. Its great because the doctors only have so much time each visit and there is alot of things to know to take care of someone with CF. Blessings
momofcfprincess
New member
I think support means everything. I just found this website about a month ago and love it!!!
I think it is so good to talk to others that are in our "same boat". I am also apart of a CF Moms group that meets once a month. I have learned Alot from that and have gained alot of CF knowledge from here lately. Its great because the doctors only have so much time each visit and there is alot of things to know to take care of someone with CF. Blessings
I think it is so good to talk to others that are in our "same boat". I am also apart of a CF Moms group that meets once a month. I have learned Alot from that and have gained alot of CF knowledge from here lately. Its great because the doctors only have so much time each visit and there is alot of things to know to take care of someone with CF. Blessings
momofcfprincess
New member
I think support means everything. I just found this website about a month ago and love it!!!
<br />I think it is so good to talk to others that are in our "same boat". I am also apart of a CF Moms group that meets once a month. I have learned Alot from that and have gained alot of CF knowledge from here lately. Its great because the doctors only have so much time each visit and there is alot of things to know to take care of someone with CF. Blessings
<br />I think it is so good to talk to others that are in our "same boat". I am also apart of a CF Moms group that meets once a month. I have learned Alot from that and have gained alot of CF knowledge from here lately. Its great because the doctors only have so much time each visit and there is alot of things to know to take care of someone with CF. Blessings
Congrats on your little guy and welcome to the site - you'll find a tremendous amount of support and information here. My daughter is almost 2.5 years old and has CF. I've learned a lot from everyone here, as you will. You'll settle into a routine and life will achieve a new "norm". I remember doing CPT on her as an infant and wondering if life will ever feel normal again. Today, her treatments have fallen into life's routine. She has never been sweat-tested as newborn screening in CA sends samples for further testing upon elevated IRT levels. My daughter's mutations are dd508. The sweat-test will tell you nothing about severity of CF...don't stress about the numbers - if this has even been a concern for you.
There is a lot of information regarding CF on the Internet. It's easy to stay up nights researching all that you can...be cautious and don't do more harm than good with this information! Much of it is out-dated and unreliable. This is not to say that CF isn't a serious illness - there still isn't a cure - however, therapies are tremendously different in comparison to much CF-related data that you may find in Internet publications. Know that prevention is the key...nutrition...proactive rather than reactive treatment approaches. I know how you're feeling - you will be helped greatly by the knowledge and experiences of those on this site!
There is a lot of information regarding CF on the Internet. It's easy to stay up nights researching all that you can...be cautious and don't do more harm than good with this information! Much of it is out-dated and unreliable. This is not to say that CF isn't a serious illness - there still isn't a cure - however, therapies are tremendously different in comparison to much CF-related data that you may find in Internet publications. Know that prevention is the key...nutrition...proactive rather than reactive treatment approaches. I know how you're feeling - you will be helped greatly by the knowledge and experiences of those on this site!
Congrats on your little guy and welcome to the site - you'll find a tremendous amount of support and information here. My daughter is almost 2.5 years old and has CF. I've learned a lot from everyone here, as you will. You'll settle into a routine and life will achieve a new "norm". I remember doing CPT on her as an infant and wondering if life will ever feel normal again. Today, her treatments have fallen into life's routine. She has never been sweat-tested as newborn screening in CA sends samples for further testing upon elevated IRT levels. My daughter's mutations are dd508. The sweat-test will tell you nothing about severity of CF...don't stress about the numbers - if this has even been a concern for you.
There is a lot of information regarding CF on the Internet. It's easy to stay up nights researching all that you can...be cautious and don't do more harm than good with this information! Much of it is out-dated and unreliable. This is not to say that CF isn't a serious illness - there still isn't a cure - however, therapies are tremendously different in comparison to much CF-related data that you may find in Internet publications. Know that prevention is the key...nutrition...proactive rather than reactive treatment approaches. I know how you're feeling - you will be helped greatly by the knowledge and experiences of those on this site!
There is a lot of information regarding CF on the Internet. It's easy to stay up nights researching all that you can...be cautious and don't do more harm than good with this information! Much of it is out-dated and unreliable. This is not to say that CF isn't a serious illness - there still isn't a cure - however, therapies are tremendously different in comparison to much CF-related data that you may find in Internet publications. Know that prevention is the key...nutrition...proactive rather than reactive treatment approaches. I know how you're feeling - you will be helped greatly by the knowledge and experiences of those on this site!
Congrats on your little guy and welcome to the site - you'll find a tremendous amount of support and information here. My daughter is almost 2.5 years old and has CF. I've learned a lot from everyone here, as you will. You'll settle into a routine and life will achieve a new "norm". I remember doing CPT on her as an infant and wondering if life will ever feel normal again. Today, her treatments have fallen into life's routine. She has never been sweat-tested as newborn screening in CA sends samples for further testing upon elevated IRT levels. My daughter's mutations are dd508. The sweat-test will tell you nothing about severity of CF...don't stress about the numbers - if this has even been a concern for you.
<br />
<br />There is a lot of information regarding CF on the Internet. It's easy to stay up nights researching all that you can...be cautious and don't do more harm than good with this information! Much of it is out-dated and unreliable. This is not to say that CF isn't a serious illness - there still isn't a cure - however, therapies are tremendously different in comparison to much CF-related data that you may find in Internet publications. Know that prevention is the key...nutrition...proactive rather than reactive treatment approaches. I know how you're feeling - you will be helped greatly by the knowledge and experiences of those on this site!
<br />
<br />There is a lot of information regarding CF on the Internet. It's easy to stay up nights researching all that you can...be cautious and don't do more harm than good with this information! Much of it is out-dated and unreliable. This is not to say that CF isn't a serious illness - there still isn't a cure - however, therapies are tremendously different in comparison to much CF-related data that you may find in Internet publications. Know that prevention is the key...nutrition...proactive rather than reactive treatment approaches. I know how you're feeling - you will be helped greatly by the knowledge and experiences of those on this site!
G
grantsmom
Guest
Welcome to the site. I know you will find so much info and support here. It has been a lifeline for me. My son was diagnosed at two weeks old. I think I was in a fog for at least six months post diagnosis. He is two now and it has definately gotten easier. Please keep us updated on your little guy
G
grantsmom
Guest
Welcome to the site. I know you will find so much info and support here. It has been a lifeline for me. My son was diagnosed at two weeks old. I think I was in a fog for at least six months post diagnosis. He is two now and it has definately gotten easier. Please keep us updated on your little guy
G
grantsmom
Guest
Welcome to the site. I know you will find so much info and support here. It has been a lifeline for me. My son was diagnosed at two weeks old. I think I was in a fog for at least six months post diagnosis. He is two now and it has definately gotten easier. Please keep us updated on your little guy
Hi! Welcome to the site and congratulations on the birth of your son! As you can tell from the amount of responses you've received, this site will be your best resource as you navigate through the CF world.
My daughter was born in Jan of 09 and diagnosed at 6 days old with CF. She is our first and there isn't a family history of CF, as is true for most families.
I cried when I read your post because it took me back to those horrible days and weeks surrounding Maggie's diagnosis. The guilt, the fear, the unknown. All I can say is that it does get better.
Maggie is a happy, healthy almost two year old who brightens our lives everyday. We have all the hope in the world that she will outlive us.
It is all overwhelming for you right now I'm sure. It hasn't been that long since I was in your spot. Please ask any questions you have. Don't hestitate if you need to vent. CF sucks and it takes getting use to and you'll have to make adjustments to the life you had planned and envisioned for your son and as a family. But you will still have a normal life - just different.
I'll be thinking of you. Please keep us posted on how you are all doing.
My daughter was born in Jan of 09 and diagnosed at 6 days old with CF. She is our first and there isn't a family history of CF, as is true for most families.
I cried when I read your post because it took me back to those horrible days and weeks surrounding Maggie's diagnosis. The guilt, the fear, the unknown. All I can say is that it does get better.
Maggie is a happy, healthy almost two year old who brightens our lives everyday. We have all the hope in the world that she will outlive us.
It is all overwhelming for you right now I'm sure. It hasn't been that long since I was in your spot. Please ask any questions you have. Don't hestitate if you need to vent. CF sucks and it takes getting use to and you'll have to make adjustments to the life you had planned and envisioned for your son and as a family. But you will still have a normal life - just different.
I'll be thinking of you. Please keep us posted on how you are all doing.