newborn diagnosed

[newcfmom]

Help!
<img src="i/expressions/brokenheart.gif" border="0">My 7 week old daughter was just diagnosed with CF. She has had no symptoms but the abnormal gene showed up on a standard test at birth... so we proceeded with the recommend sweat test. Her first test was invalid... at only 2 weeks she could not produce enough sweat... so we took her back last week and she tested in the 87/93. We were in complete shock! We had conviced ourselves that she was fine. She's been gaining weight, she doesn't taste salty, her bowel movements have been normal... but I'm just so scared! We have a healthy 4 year old son... neither of us knew the gene was floating around in our families, so we're still both in complete shock. We meet with the CF team next week to run some tests... how long before we know the severity of her CF? What will it be like for her growing up? What will it be like for her brother? I can hardly think of their futures without crying. I can't believe how one phone call could turn our worlds upside down!

 

[newcfmom]

Help!
<img src="i/expressions/brokenheart.gif" border="0">My 7 week old daughter was just diagnosed with CF. She has had no symptoms but the abnormal gene showed up on a standard test at birth... so we proceeded with the recommend sweat test. Her first test was invalid... at only 2 weeks she could not produce enough sweat... so we took her back last week and she tested in the 87/93. We were in complete shock! We had conviced ourselves that she was fine. She's been gaining weight, she doesn't taste salty, her bowel movements have been normal... but I'm just so scared! We have a healthy 4 year old son... neither of us knew the gene was floating around in our families, so we're still both in complete shock. We meet with the CF team next week to run some tests... how long before we know the severity of her CF? What will it be like for her growing up? What will it be like for her brother? I can hardly think of their futures without crying. I can't believe how one phone call could turn our worlds upside down!

 

[newcfmom]

Help!
<img src="i/expressions/brokenheart.gif" border="0">My 7 week old daughter was just diagnosed with CF. She has had no symptoms but the abnormal gene showed up on a standard test at birth... so we proceeded with the recommend sweat test. Her first test was invalid... at only 2 weeks she could not produce enough sweat... so we took her back last week and she tested in the 87/93. We were in complete shock! We had conviced ourselves that she was fine. She's been gaining weight, she doesn't taste salty, her bowel movements have been normal... but I'm just so scared! We have a healthy 4 year old son... neither of us knew the gene was floating around in our families, so we're still both in complete shock. We meet with the CF team next week to run some tests... how long before we know the severity of her CF? What will it be like for her growing up? What will it be like for her brother? I can hardly think of their futures without crying. I can't believe how one phone call could turn our worlds upside down!

 

[JazzysMom]

OK I just want to clarify something first...did they identified 1 gene or both genes because it takes 2 genes (1 from each parent) for the child to have CF? Assuming that indeed they identified both (or are working on it)...it is really difficult to say what the severity will be at any given time. Some people believe that are certain severities linked to different mutations of the gene. Even if this is true the severity can be influenced by medical care, reaction to meds used, compliance, environment and just plain old luck. NO matter what the severity is at the time of dx please remember that it WILL progress and that level of severity will change. The only real ?? is when or how quickly the progression takes place. As far as growing up. Everyone has been raised differently with their approach. Some are very quiet about things and some are willing to share with the world. The fact that she will learn everything to do with CF & have it incorperated into her life will make it easier then those of us who were dx later in life and had to have our life completely altered. I firmly believe that if you take the "matter of factly" attitude that your child will be less likely to feel "different". She will realize she has meds, treatments & maybe some restrictions, but it could just be something she adapts to instead of gets anxiety over. There will be times (especially as a teen when she wants to run & do with friends etc) where the last thing she wants to do is treatments etc because its just a "nuisance" to her. The difficult thing will be to look at the long term especially if she is doing well now. I was dx at 7 for digestive issues. For the most part I was healthy even when my lungs kicked in. I didnt do treatments as I should have. I guess for a few reasons. My parents (mom mostly) wanted me to "enjoy" life while I could and it didnt hinder me at that very time to not do treatments. Well here I am at age 39 and things dont work like that anymore. I dont have the "privelage" of skipping treatments and not feeling it. I would imagine that some of my progression is from not caring for myself properly over the years. I didnt not dedicate myself to my care until after my daughter was born when I was 30 years old. As to her brother....it will be difficult. He might not grasp the time & effort required for his sisters care and when she actually has a flareup & reality sets in, it might scare him. At the same time I would hope & do imagine (as many cases with siblings on here at young ages) that he will partake in her care & be supportive. All of it is scary and not knowing the exact time frames that you are dealing with can be overwhelming, but that shouldnt stop her from striving and achieving many things in life. I wish their was a crystal ball to look into for you and please realize this is all based on my opinion and experience.......BTW Welcome and I do apologize for the lengthy response.

 

[JazzysMom]

OK I just want to clarify something first...did they identified 1 gene or both genes because it takes 2 genes (1 from each parent) for the child to have CF? Assuming that indeed they identified both (or are working on it)...it is really difficult to say what the severity will be at any given time. Some people believe that are certain severities linked to different mutations of the gene. Even if this is true the severity can be influenced by medical care, reaction to meds used, compliance, environment and just plain old luck. NO matter what the severity is at the time of dx please remember that it WILL progress and that level of severity will change. The only real ?? is when or how quickly the progression takes place. As far as growing up. Everyone has been raised differently with their approach. Some are very quiet about things and some are willing to share with the world. The fact that she will learn everything to do with CF & have it incorperated into her life will make it easier then those of us who were dx later in life and had to have our life completely altered. I firmly believe that if you take the "matter of factly" attitude that your child will be less likely to feel "different". She will realize she has meds, treatments & maybe some restrictions, but it could just be something she adapts to instead of gets anxiety over. There will be times (especially as a teen when she wants to run & do with friends etc) where the last thing she wants to do is treatments etc because its just a "nuisance" to her. The difficult thing will be to look at the long term especially if she is doing well now. I was dx at 7 for digestive issues. For the most part I was healthy even when my lungs kicked in. I didnt do treatments as I should have. I guess for a few reasons. My parents (mom mostly) wanted me to "enjoy" life while I could and it didnt hinder me at that very time to not do treatments. Well here I am at age 39 and things dont work like that anymore. I dont have the "privelage" of skipping treatments and not feeling it. I would imagine that some of my progression is from not caring for myself properly over the years. I didnt not dedicate myself to my care until after my daughter was born when I was 30 years old. As to her brother....it will be difficult. He might not grasp the time & effort required for his sisters care and when she actually has a flareup & reality sets in, it might scare him. At the same time I would hope & do imagine (as many cases with siblings on here at young ages) that he will partake in her care & be supportive. All of it is scary and not knowing the exact time frames that you are dealing with can be overwhelming, but that shouldnt stop her from striving and achieving many things in life. I wish their was a crystal ball to look into for you and please realize this is all based on my opinion and experience.......BTW Welcome and I do apologize for the lengthy response.

 

[JazzysMom]

OK I just want to clarify something first...did they identified 1 gene or both genes because it takes 2 genes (1 from each parent) for the child to have CF? Assuming that indeed they identified both (or are working on it)...it is really difficult to say what the severity will be at any given time. Some people believe that are certain severities linked to different mutations of the gene. Even if this is true the severity can be influenced by medical care, reaction to meds used, compliance, environment and just plain old luck. NO matter what the severity is at the time of dx please remember that it WILL progress and that level of severity will change. The only real ?? is when or how quickly the progression takes place. As far as growing up. Everyone has been raised differently with their approach. Some are very quiet about things and some are willing to share with the world. The fact that she will learn everything to do with CF & have it incorperated into her life will make it easier then those of us who were dx later in life and had to have our life completely altered. I firmly believe that if you take the "matter of factly" attitude that your child will be less likely to feel "different". She will realize she has meds, treatments & maybe some restrictions, but it could just be something she adapts to instead of gets anxiety over. There will be times (especially as a teen when she wants to run & do with friends etc) where the last thing she wants to do is treatments etc because its just a "nuisance" to her. The difficult thing will be to look at the long term especially if she is doing well now. I was dx at 7 for digestive issues. For the most part I was healthy even when my lungs kicked in. I didnt do treatments as I should have. I guess for a few reasons. My parents (mom mostly) wanted me to "enjoy" life while I could and it didnt hinder me at that very time to not do treatments. Well here I am at age 39 and things dont work like that anymore. I dont have the "privelage" of skipping treatments and not feeling it. I would imagine that some of my progression is from not caring for myself properly over the years. I didnt not dedicate myself to my care until after my daughter was born when I was 30 years old. As to her brother....it will be difficult. He might not grasp the time & effort required for his sisters care and when she actually has a flareup & reality sets in, it might scare him. At the same time I would hope & do imagine (as many cases with siblings on here at young ages) that he will partake in her care & be supportive. All of it is scary and not knowing the exact time frames that you are dealing with can be overwhelming, but that shouldnt stop her from striving and achieving many things in life. I wish their was a crystal ball to look into for you and please realize this is all based on my opinion and experience.......BTW Welcome and I do apologize for the lengthy response.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>newcfmom</b></i>

how long before we know the severity of her CF? </end quote></div>

I haven't read Mel's post so forgive me if I'm repeating anything.

No one can predict the severity of CF. It's a progressive disease, so it will get worse with time. That's just how it goes.

<div class="FTQUOTE"><begin quote>What will it be like for her growing up? </end quote></div>

That all depends on many things. What type of care the CF center gives your daughter. How compliance you are with her medical routine. How proactive you are with doing research on your own (you will find that every CF center is different but there are definately best practices out there that your clinic many not be doing), etc.

Take care. I know this is overwhelming, but life will go on... it has for all of us and it will for you too.


-25/F/ with CF

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>newcfmom</b></i>

how long before we know the severity of her CF? </end quote></div>

I haven't read Mel's post so forgive me if I'm repeating anything.

No one can predict the severity of CF. It's a progressive disease, so it will get worse with time. That's just how it goes.

<div class="FTQUOTE"><begin quote>What will it be like for her growing up? </end quote></div>

That all depends on many things. What type of care the CF center gives your daughter. How compliance you are with her medical routine. How proactive you are with doing research on your own (you will find that every CF center is different but there are definately best practices out there that your clinic many not be doing), etc.

Take care. I know this is overwhelming, but life will go on... it has for all of us and it will for you too.


-25/F/ with CF

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>newcfmom</b></i>

how long before we know the severity of her CF? </end quote></div>

I haven't read Mel's post so forgive me if I'm repeating anything.

No one can predict the severity of CF. It's a progressive disease, so it will get worse with time. That's just how it goes.

<div class="FTQUOTE"><begin quote>What will it be like for her growing up? </end quote></div>

That all depends on many things. What type of care the CF center gives your daughter. How compliance you are with her medical routine. How proactive you are with doing research on your own (you will find that every CF center is different but there are definately best practices out there that your clinic many not be doing), etc.

Take care. I know this is overwhelming, but life will go on... it has for all of us and it will for you too.


-25/F/ with CF

 

[EmilysMom]

I wanted to repeat Jazzy's Mom's answer about the necessity of 2 genes being necessary for CF to be diagnosed. One gene from Mom and one gene from Dad. It wasn't very clear in your post whether 2 genes had been identified or not. Like the other two answers, the severity of CF differs with every patient and there is no crystal ball with CF either.
I will tell you what the doctors told us when Emily was diagnosed. She was born on January 13th (a Friday thank you very much!) and we were told she had a 50/50 chance of seeing her 18th birthday. WELL.....she is 23-1/2, going to college full time, engaged to be married, going on her 2nd cruise next month and enjoying life and her family and friends and has already outlived the doctors expectations, so you see, CF is different for everyone. You can live a very wonderful, full life with CF like Emily is doing.
It is not a death sentence like it was many many years ago.....now it is just a stumbling block that you have to learn to work with.
Hang in there!

 

[EmilysMom]

I wanted to repeat Jazzy's Mom's answer about the necessity of 2 genes being necessary for CF to be diagnosed. One gene from Mom and one gene from Dad. It wasn't very clear in your post whether 2 genes had been identified or not. Like the other two answers, the severity of CF differs with every patient and there is no crystal ball with CF either.
I will tell you what the doctors told us when Emily was diagnosed. She was born on January 13th (a Friday thank you very much!) and we were told she had a 50/50 chance of seeing her 18th birthday. WELL.....she is 23-1/2, going to college full time, engaged to be married, going on her 2nd cruise next month and enjoying life and her family and friends and has already outlived the doctors expectations, so you see, CF is different for everyone. You can live a very wonderful, full life with CF like Emily is doing.
It is not a death sentence like it was many many years ago.....now it is just a stumbling block that you have to learn to work with.
Hang in there!

 

[EmilysMom]

I wanted to repeat Jazzy's Mom's answer about the necessity of 2 genes being necessary for CF to be diagnosed. One gene from Mom and one gene from Dad. It wasn't very clear in your post whether 2 genes had been identified or not. Like the other two answers, the severity of CF differs with every patient and there is no crystal ball with CF either.
I will tell you what the doctors told us when Emily was diagnosed. She was born on January 13th (a Friday thank you very much!) and we were told she had a 50/50 chance of seeing her 18th birthday. WELL.....she is 23-1/2, going to college full time, engaged to be married, going on her 2nd cruise next month and enjoying life and her family and friends and has already outlived the doctors expectations, so you see, CF is different for everyone. You can live a very wonderful, full life with CF like Emily is doing.
It is not a death sentence like it was many many years ago.....now it is just a stumbling block that you have to learn to work with.
Hang in there!

 

[PACmommy]

As far as I've been told, the degree of severity has to do with the individual as well as the prevention of illness and good therapy practices.
The more you prevent your child from getting sick and keep up on good therapy practices the better her chances are, so be proactive.
Also I know she seems young to be diagnosed, but consider this an advantage to you. You know early and can prevent more damage. We didn't find out about our daughter's CF until 2 1/2, after many lung problems. I always worry about the time we didn't know and could have prevented lung damage.

 

[PACmommy]

As far as I've been told, the degree of severity has to do with the individual as well as the prevention of illness and good therapy practices.
The more you prevent your child from getting sick and keep up on good therapy practices the better her chances are, so be proactive.
Also I know she seems young to be diagnosed, but consider this an advantage to you. You know early and can prevent more damage. We didn't find out about our daughter's CF until 2 1/2, after many lung problems. I always worry about the time we didn't know and could have prevented lung damage.

 

[PACmommy]

As far as I've been told, the degree of severity has to do with the individual as well as the prevention of illness and good therapy practices.
The more you prevent your child from getting sick and keep up on good therapy practices the better her chances are, so be proactive.
Also I know she seems young to be diagnosed, but consider this an advantage to you. You know early and can prevent more damage. We didn't find out about our daughter's CF until 2 1/2, after many lung problems. I always worry about the time we didn't know and could have prevented lung damage.

 

[Mommafirst]

Hi newCFmom, I know your heartbreak. Most of us here do. My daughter was diagnosed at 5 months, but was suspected of CF from birth. We had no family history, as most don't. She has been mostly very healthy. We had one recent hosptal stay after her first birthday. Otherwise life is "relatively" normal. Its a huge adjustment, but eventually you will be able to look at her and smile, and not have tears in your eyes. You will eventually not echo CF in your ears all day and night. It does get easier to cope. Not easy, just easier.

I have found indespensible information and support here. There is a LOT to learn, so take it slowly and this garbled foreign language will eventually become second nature. The need to know how this is going to progress and what is going to happen will simmer down a bit as you realize that there is no more ability to predict the severity of her CF than you can predict the life of your son. The future is a mystery, the past history, but the present is a gift. Hang in there and be good to yourself as you deal with this news.

 

[Mommafirst]

Hi newCFmom, I know your heartbreak. Most of us here do. My daughter was diagnosed at 5 months, but was suspected of CF from birth. We had no family history, as most don't. She has been mostly very healthy. We had one recent hosptal stay after her first birthday. Otherwise life is "relatively" normal. Its a huge adjustment, but eventually you will be able to look at her and smile, and not have tears in your eyes. You will eventually not echo CF in your ears all day and night. It does get easier to cope. Not easy, just easier.

I have found indespensible information and support here. There is a LOT to learn, so take it slowly and this garbled foreign language will eventually become second nature. The need to know how this is going to progress and what is going to happen will simmer down a bit as you realize that there is no more ability to predict the severity of her CF than you can predict the life of your son. The future is a mystery, the past history, but the present is a gift. Hang in there and be good to yourself as you deal with this news.

 

[Mommafirst]

Hi newCFmom, I know your heartbreak. Most of us here do. My daughter was diagnosed at 5 months, but was suspected of CF from birth. We had no family history, as most don't. She has been mostly very healthy. We had one recent hosptal stay after her first birthday. Otherwise life is "relatively" normal. Its a huge adjustment, but eventually you will be able to look at her and smile, and not have tears in your eyes. You will eventually not echo CF in your ears all day and night. It does get easier to cope. Not easy, just easier.

I have found indespensible information and support here. There is a LOT to learn, so take it slowly and this garbled foreign language will eventually become second nature. The need to know how this is going to progress and what is going to happen will simmer down a bit as you realize that there is no more ability to predict the severity of her CF than you can predict the life of your son. The future is a mystery, the past history, but the present is a gift. Hang in there and be good to yourself as you deal with this news.

 

[Alyssa]

I don't have a lot to add, as much good info has already been stated, but I wanted to say to the others who wanted clarification about how many genes were found -- I'm guessing even if they did only have one CF gene identified at this time, the sweat test numbers are pretty high -- there probably isn't much of a question of dx with those numbers.

Also to the mother -- like everyone said, there are many factors that can contribute to the wellness of a patient, but sometimes despite a patient/families best efforts, things just don't go well. It's very hard to predict. Just do the best that you can and know that there are people out there in their 60's and 70's with CF too !

 

[Alyssa]

I don't have a lot to add, as much good info has already been stated, but I wanted to say to the others who wanted clarification about how many genes were found -- I'm guessing even if they did only have one CF gene identified at this time, the sweat test numbers are pretty high -- there probably isn't much of a question of dx with those numbers.

Also to the mother -- like everyone said, there are many factors that can contribute to the wellness of a patient, but sometimes despite a patient/families best efforts, things just don't go well. It's very hard to predict. Just do the best that you can and know that there are people out there in their 60's and 70's with CF too !