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newcfmom
04-18-2007, 12:58 AM
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
04-18-2007, 12:58 AM
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
04-18-2007, 12:58 AM
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
04-18-2007, 09:07 AM
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
04-18-2007, 09:07 AM
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
04-18-2007, 09:07 AM
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
04-18-2007, 09:14 AM
<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
04-18-2007, 09:14 AM
<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
04-18-2007, 09:14 AM
<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
04-18-2007, 11:03 AM
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
04-18-2007, 11:03 AM
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
04-18-2007, 11:03 AM
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
04-18-2007, 12:57 PM
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
04-18-2007, 12:57 PM
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
04-18-2007, 12:57 PM
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
04-18-2007, 05:55 PM
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
04-18-2007, 05:55 PM
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
04-18-2007, 05:55 PM
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
04-20-2007, 01:43 AM
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
04-20-2007, 01:43 AM
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
04-20-2007, 01:43 AM
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
04-20-2007, 01:45 AM
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
04-20-2007, 01:45 AM
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
04-20-2007, 01:45 AM
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 !

newcfmom
04-21-2007, 01:31 AM
Thanks for all the replies. I am feeling a bit better about the situation already. It's been wonderful to hear from so many of you who either live with CF or who have older children with CF. it really does give me hope that she really can have a long happy life. For a couple of you who asked.. my husband and I have not yet been tested, but because of the sweat test results the doctors told us she definitely has CF.
The good news is we were at the doc for my dsughter's 2 month check up today and he said she has no symptoms yet and so far appears to be completely healthy. I realize this can all change very quickly, but I'm taking it one day at a time.. and I'm thankful she's healthy so far.

newcfmom
04-21-2007, 01:31 AM
Thanks for all the replies. I am feeling a bit better about the situation already. It's been wonderful to hear from so many of you who either live with CF or who have older children with CF. it really does give me hope that she really can have a long happy life. For a couple of you who asked.. my husband and I have not yet been tested, but because of the sweat test results the doctors told us she definitely has CF.
The good news is we were at the doc for my dsughter's 2 month check up today and he said she has no symptoms yet and so far appears to be completely healthy. I realize this can all change very quickly, but I'm taking it one day at a time.. and I'm thankful she's healthy so far.

newcfmom
04-21-2007, 01:31 AM
Thanks for all the replies. I am feeling a bit better about the situation already. It's been wonderful to hear from so many of you who either live with CF or who have older children with CF. it really does give me hope that she really can have a long happy life. For a couple of you who asked.. my husband and I have not yet been tested, but because of the sweat test results the doctors told us she definitely has CF.
The good news is we were at the doc for my dsughter's 2 month check up today and he said she has no symptoms yet and so far appears to be completely healthy. I realize this can all change very quickly, but I'm taking it one day at a time.. and I'm thankful she's healthy so far.

CFMOM65
04-21-2007, 02:24 AM
hi it seems like yesterday that my littlest one was diagnosed w/ cf w / a sweat teast of 110 she was 2 weeks old and it was 2 days before xmas it was really hard on me but ibelieve like u do u have 2 take it a day at a time and pray alot and hope that by the time they are in there teens there will be a miraculous drug or better yet a cure. shes 16 mnths now and doing very well except for her sinuses the 1st year was really rough 10 hospital stays 3 were from pneumonia caused by aspirating her formula shes had rectal prolapse needless 2 say i spent alot of the 1st yr crying i found though in your most difficult times u find a strength in yourself that u didn't know u had. her 2nd yr has been really good 1 overnight stay for a vitamin k defficiency and some sinus issues and shes in the 50 th percentile for weight. ido agree that the severity of cf is different in everyone one may have mild symptoms and another case may be severe. i have a 9 yr old w/o cf, i had her tested after the baby was diagnosed & the sweat test was neg things 4 the most part are a little hard on her theres alot of time spent on the baby but i make special outings and alone time just for us that helps, she loves her sister. the only time thats really hard on her and myself are hospital stays but we make it thru and so will u, i hope this helps i know how it feels

cfmom

daughter 9 yrs old w/o cf and baby girl 16 mnths w/ cf

CFMOM65
04-21-2007, 02:24 AM
hi it seems like yesterday that my littlest one was diagnosed w/ cf w / a sweat teast of 110 she was 2 weeks old and it was 2 days before xmas it was really hard on me but ibelieve like u do u have 2 take it a day at a time and pray alot and hope that by the time they are in there teens there will be a miraculous drug or better yet a cure. shes 16 mnths now and doing very well except for her sinuses the 1st year was really rough 10 hospital stays 3 were from pneumonia caused by aspirating her formula shes had rectal prolapse needless 2 say i spent alot of the 1st yr crying i found though in your most difficult times u find a strength in yourself that u didn't know u had. her 2nd yr has been really good 1 overnight stay for a vitamin k defficiency and some sinus issues and shes in the 50 th percentile for weight. ido agree that the severity of cf is different in everyone one may have mild symptoms and another case may be severe. i have a 9 yr old w/o cf, i had her tested after the baby was diagnosed & the sweat test was neg things 4 the most part are a little hard on her theres alot of time spent on the baby but i make special outings and alone time just for us that helps, she loves her sister. the only time thats really hard on her and myself are hospital stays but we make it thru and so will u, i hope this helps i know how it feels

cfmom

daughter 9 yrs old w/o cf and baby girl 16 mnths w/ cf

CFMOM65
04-21-2007, 02:24 AM
hi it seems like yesterday that my littlest one was diagnosed w/ cf w / a sweat teast of 110 she was 2 weeks old and it was 2 days before xmas it was really hard on me but ibelieve like u do u have 2 take it a day at a time and pray alot and hope that by the time they are in there teens there will be a miraculous drug or better yet a cure. shes 16 mnths now and doing very well except for her sinuses the 1st year was really rough 10 hospital stays 3 were from pneumonia caused by aspirating her formula shes had rectal prolapse needless 2 say i spent alot of the 1st yr crying i found though in your most difficult times u find a strength in yourself that u didn't know u had. her 2nd yr has been really good 1 overnight stay for a vitamin k defficiency and some sinus issues and shes in the 50 th percentile for weight. ido agree that the severity of cf is different in everyone one may have mild symptoms and another case may be severe. i have a 9 yr old w/o cf, i had her tested after the baby was diagnosed & the sweat test was neg things 4 the most part are a little hard on her theres alot of time spent on the baby but i make special outings and alone time just for us that helps, she loves her sister. the only time thats really hard on her and myself are hospital stays but we make it thru and so will u, i hope this helps i know how it feels

cfmom

daughter 9 yrs old w/o cf and baby girl 16 mnths w/ cf

Ellasmommy
05-01-2007, 06:30 PM
My daughter was diagnosed at 9 days old with no symptons! I feel your pain and every day I am learning more and more. Hope for the best pray for the worse.

Ellasmommy
05-01-2007, 06:30 PM
My daughter was diagnosed at 9 days old with no symptons! I feel your pain and every day I am learning more and more. Hope for the best pray for the worse.

Ellasmommy
05-01-2007, 06:30 PM
My daughter was diagnosed at 9 days old with no symptons! I feel your pain and every day I am learning more and more. Hope for the best pray for the worse.

Hughett
05-04-2007, 09:51 PM
I am sooo sorry that you are going thru this. It reminds me of our son who is now 10 mo. old and our experience when we found out. Lots of Crying and praying. Like you I had no idea there was a CF Gene in my family line. Took us by surprise. One of the best things that happened me is finding this site. This has been a better source of information than our doctor at times. lol.

Thankfully our baby is gaining weight like crazy. Enzymes are a great thing <img src="i/expressions/face-icon-small-smile.gif" border="0"> John for the most part is quite normal. After awhile everything sinks into a norm where you take care of you child and keep everything clean ect.... Once again I am sorry that has happened but I am glad you are here with all these great people on this site. The support from everyone here helped me get thru it. If you need anything at all just let me know. My wife and I will help any way we can. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Hughett
05-04-2007, 09:51 PM
I am sooo sorry that you are going thru this. It reminds me of our son who is now 10 mo. old and our experience when we found out. Lots of Crying and praying. Like you I had no idea there was a CF Gene in my family line. Took us by surprise. One of the best things that happened me is finding this site. This has been a better source of information than our doctor at times. lol.

Thankfully our baby is gaining weight like crazy. Enzymes are a great thing <img src="i/expressions/face-icon-small-smile.gif" border="0"> John for the most part is quite normal. After awhile everything sinks into a norm where you take care of you child and keep everything clean ect.... Once again I am sorry that has happened but I am glad you are here with all these great people on this site. The support from everyone here helped me get thru it. If you need anything at all just let me know. My wife and I will help any way we can. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Hughett
05-04-2007, 09:51 PM
I am sooo sorry that you are going thru this. It reminds me of our son who is now 10 mo. old and our experience when we found out. Lots of Crying and praying. Like you I had no idea there was a CF Gene in my family line. Took us by surprise. One of the best things that happened me is finding this site. This has been a better source of information than our doctor at times. lol.

Thankfully our baby is gaining weight like crazy. Enzymes are a great thing <img src="i/expressions/face-icon-small-smile.gif" border="0"> John for the most part is quite normal. After awhile everything sinks into a norm where you take care of you child and keep everything clean ect.... Once again I am sorry that has happened but I am glad you are here with all these great people on this site. The support from everyone here helped me get thru it. If you need anything at all just let me know. My wife and I will help any way we can. <img src="i/expressions/face-icon-small-smile.gif" border="0">

julie
05-05-2007, 01:27 AM
My husband was diagnosed at 18 months, and is now 26, a college graduate and father to 3. As other people have already said, CF is very different for everyone, even siblings who both have CF can have things more severe than the other child.

With today's treatments, there is definately hope. As a parent, I can only imagine how hard this diagnosis must be. But people do live their lives successfully with it.

I want to point out though that just because they didn't find 2 mutations, doesn't mean your child doesn't have CF with sweat numbers like your childs. There are still some unidentified CF mutations. I'm not sure if that was explained yet or not.

julie
05-05-2007, 01:27 AM
My husband was diagnosed at 18 months, and is now 26, a college graduate and father to 3. As other people have already said, CF is very different for everyone, even siblings who both have CF can have things more severe than the other child.

With today's treatments, there is definately hope. As a parent, I can only imagine how hard this diagnosis must be. But people do live their lives successfully with it.

I want to point out though that just because they didn't find 2 mutations, doesn't mean your child doesn't have CF with sweat numbers like your childs. There are still some unidentified CF mutations. I'm not sure if that was explained yet or not.

julie
05-05-2007, 01:27 AM
My husband was diagnosed at 18 months, and is now 26, a college graduate and father to 3. As other people have already said, CF is very different for everyone, even siblings who both have CF can have things more severe than the other child.

With today's treatments, there is definately hope. As a parent, I can only imagine how hard this diagnosis must be. But people do live their lives successfully with it.

I want to point out though that just because they didn't find 2 mutations, doesn't mean your child doesn't have CF with sweat numbers like your childs. There are still some unidentified CF mutations. I'm not sure if that was explained yet or not.

JennifersHope
05-05-2007, 03:50 PM
Hi,

I am sorry that you joined our club... but I always like to point out to the parents one fact... I am 34 years old and I just graduated nursing school last year and I am now an RN.. I work full time.. soon to be part time because it is to much but anyway..my lungs are decent..

My point is this.. when I was born, the average life span of someone with CF was in the low teenage years, as time went on, the life span age went up, and up and up.. and is now at 37.5 years old.

So keep that in mind, I don't believe that they discovered all that they are ever going to discover in the way of improving treatments .. I believe just like history has shown that the average life span is going to increase and increase for a lot of CFers..

There are some CFers that that isn't the case for.. and sadly that is the truth that some children, even children on this forum now are suffering a lot more then the average adult Cfer.. so it does all depend.. but you have every reason to be hopeful especially in this day and age.


Many, many, of us are adults living a decent life now. I won't lie it is hard as heck sometimes being young and feeling like I have the body of a 100 year old but usually for most of us, we take the hardship and turn it around and become stronger and kinder human beings for it.

Welcome to this website, I know you will find a lot of great help and support here.. Feel free to vent,ask questions and share anything you want..


Jennifer
34 with CF/Addison's disease/ osteroporsis. CFRD, HTN and a million and one other things I won't go into BUT is about to buy her first home.. and who in spite of having it really hard a lot of the time.. LOVes her life

JennifersHope
05-05-2007, 03:50 PM
Hi,

I am sorry that you joined our club... but I always like to point out to the parents one fact... I am 34 years old and I just graduated nursing school last year and I am now an RN.. I work full time.. soon to be part time because it is to much but anyway..my lungs are decent..

My point is this.. when I was born, the average life span of someone with CF was in the low teenage years, as time went on, the life span age went up, and up and up.. and is now at 37.5 years old.

So keep that in mind, I don't believe that they discovered all that they are ever going to discover in the way of improving treatments .. I believe just like history has shown that the average life span is going to increase and increase for a lot of CFers..

There are some CFers that that isn't the case for.. and sadly that is the truth that some children, even children on this forum now are suffering a lot more then the average adult Cfer.. so it does all depend.. but you have every reason to be hopeful especially in this day and age.


Many, many, of us are adults living a decent life now. I won't lie it is hard as heck sometimes being young and feeling like I have the body of a 100 year old but usually for most of us, we take the hardship and turn it around and become stronger and kinder human beings for it.

Welcome to this website, I know you will find a lot of great help and support here.. Feel free to vent,ask questions and share anything you want..


Jennifer
34 with CF/Addison's disease/ osteroporsis. CFRD, HTN and a million and one other things I won't go into BUT is about to buy her first home.. and who in spite of having it really hard a lot of the time.. LOVes her life

JennifersHope
05-05-2007, 03:50 PM
Hi,

I am sorry that you joined our club... but I always like to point out to the parents one fact... I am 34 years old and I just graduated nursing school last year and I am now an RN.. I work full time.. soon to be part time because it is to much but anyway..my lungs are decent..

My point is this.. when I was born, the average life span of someone with CF was in the low teenage years, as time went on, the life span age went up, and up and up.. and is now at 37.5 years old.

So keep that in mind, I don't believe that they discovered all that they are ever going to discover in the way of improving treatments .. I believe just like history has shown that the average life span is going to increase and increase for a lot of CFers..

There are some CFers that that isn't the case for.. and sadly that is the truth that some children, even children on this forum now are suffering a lot more then the average adult Cfer.. so it does all depend.. but you have every reason to be hopeful especially in this day and age.


Many, many, of us are adults living a decent life now. I won't lie it is hard as heck sometimes being young and feeling like I have the body of a 100 year old but usually for most of us, we take the hardship and turn it around and become stronger and kinder human beings for it.

Welcome to this website, I know you will find a lot of great help and support here.. Feel free to vent,ask questions and share anything you want..


Jennifer
34 with CF/Addison's disease/ osteroporsis. CFRD, HTN and a million and one other things I won't go into BUT is about to buy her first home.. and who in spite of having it really hard a lot of the time.. LOVes her life

LouLou
05-07-2007, 06:56 PM
I was diagnosed when I was 2-1/2 years old and am now 28 and pregnant. I live a wonderful and fulfilling life with a loving husband and dog. I work full time. I don't take much of anything for granted and am proud of the 3 hours of care I perform everyday to keep ahead of my cf. Of course, at anytime cf could stand up and take charge, but until then I will do what I can to enjoy the life I've made for myself.

LouLou
05-07-2007, 06:56 PM
I was diagnosed when I was 2-1/2 years old and am now 28 and pregnant. I live a wonderful and fulfilling life with a loving husband and dog. I work full time. I don't take much of anything for granted and am proud of the 3 hours of care I perform everyday to keep ahead of my cf. Of course, at anytime cf could stand up and take charge, but until then I will do what I can to enjoy the life I've made for myself.

LouLou
05-07-2007, 06:56 PM
I was diagnosed when I was 2-1/2 years old and am now 28 and pregnant. I live a wonderful and fulfilling life with a loving husband and dog. I work full time. I don't take much of anything for granted and am proud of the 3 hours of care I perform everyday to keep ahead of my cf. Of course, at anytime cf could stand up and take charge, but until then I will do what I can to enjoy the life I've made for myself.