Diagnosed today

[Ratatosk]

I was going to add that when the test results came back -- I cried non-stop for hours. Worried about our son's future. My husband worried that he was going to be the lonely, sickly child, in and out of the hospital that nobody would play with... All I'd known about CF was from a television medical drama where a teenager was very sick.

And then, the CF doctor walked in and took us to a conference room and explained about CF -- history, different aspects about what areas the disease affects, warned us about looking things up in the hospital library or on the internet... And then he called up to the CF floor and asked one of his patients to come down and visit with us. We were shocked. A NORMAL looking, normal acting teenager.

Sure we still went thru several emotional stages -- kinda like the stages of grief -- denial, anger, acceptance. I still worry, still cry. But we take it one day at a time. Got into a routine with his medications, treatments so he can have a normal life.

Today our son is a normal, busy 4 1/2 year old. He goes to preschool. He just started taking skating lessons and thinks he wants to be a hockey player. Though not sure how he's going to manage that if I keep having to hold him up on his skates <img src="i/expressions/face-icon-small-smile.gif" border="0"> He's also in gymnastics and last year took swimming lessons. Currently I'm a little stressed because next year he'll be starting regular public school. I'm sure he'll do fine. It's just another one of those milestones and a BIG unknown for a worrier like me.

Oh and during appointments, I always bring along a notebook with questions and to write down things the doctor says. It helps to remember because it's sometimes hard to concentrate on what they're saying while still trying to keep your child occupied.

 

[Ratatosk]

I was going to add that when the test results came back -- I cried non-stop for hours. Worried about our son's future. My husband worried that he was going to be the lonely, sickly child, in and out of the hospital that nobody would play with... All I'd known about CF was from a television medical drama where a teenager was very sick.

And then, the CF doctor walked in and took us to a conference room and explained about CF -- history, different aspects about what areas the disease affects, warned us about looking things up in the hospital library or on the internet... And then he called up to the CF floor and asked one of his patients to come down and visit with us. We were shocked. A NORMAL looking, normal acting teenager.

Sure we still went thru several emotional stages -- kinda like the stages of grief -- denial, anger, acceptance. I still worry, still cry. But we take it one day at a time. Got into a routine with his medications, treatments so he can have a normal life.

Today our son is a normal, busy 4 1/2 year old. He goes to preschool. He just started taking skating lessons and thinks he wants to be a hockey player. Though not sure how he's going to manage that if I keep having to hold him up on his skates <img src="i/expressions/face-icon-small-smile.gif" border="0"> He's also in gymnastics and last year took swimming lessons. Currently I'm a little stressed because next year he'll be starting regular public school. I'm sure he'll do fine. It's just another one of those milestones and a BIG unknown for a worrier like me.

Oh and during appointments, I always bring along a notebook with questions and to write down things the doctor says. It helps to remember because it's sometimes hard to concentrate on what they're saying while still trying to keep your child occupied.

 

[Ratatosk]

I was going to add that when the test results came back -- I cried non-stop for hours. Worried about our son's future. My husband worried that he was going to be the lonely, sickly child, in and out of the hospital that nobody would play with... All I'd known about CF was from a television medical drama where a teenager was very sick.

And then, the CF doctor walked in and took us to a conference room and explained about CF -- history, different aspects about what areas the disease affects, warned us about looking things up in the hospital library or on the internet... And then he called up to the CF floor and asked one of his patients to come down and visit with us. We were shocked. A NORMAL looking, normal acting teenager.

Sure we still went thru several emotional stages -- kinda like the stages of grief -- denial, anger, acceptance. I still worry, still cry. But we take it one day at a time. Got into a routine with his medications, treatments so he can have a normal life.

Today our son is a normal, busy 4 1/2 year old. He goes to preschool. He just started taking skating lessons and thinks he wants to be a hockey player. Though not sure how he's going to manage that if I keep having to hold him up on his skates <img src="i/expressions/face-icon-small-smile.gif" border="0"> He's also in gymnastics and last year took swimming lessons. Currently I'm a little stressed because next year he'll be starting regular public school. I'm sure he'll do fine. It's just another one of those milestones and a BIG unknown for a worrier like me.

Oh and during appointments, I always bring along a notebook with questions and to write down things the doctor says. It helps to remember because it's sometimes hard to concentrate on what they're saying while still trying to keep your child occupied.

 

[Ratatosk]

I was going to add that when the test results came back -- I cried non-stop for hours. Worried about our son's future. My husband worried that he was going to be the lonely, sickly child, in and out of the hospital that nobody would play with... All I'd known about CF was from a television medical drama where a teenager was very sick.

And then, the CF doctor walked in and took us to a conference room and explained about CF -- history, different aspects about what areas the disease affects, warned us about looking things up in the hospital library or on the internet... And then he called up to the CF floor and asked one of his patients to come down and visit with us. We were shocked. A NORMAL looking, normal acting teenager.

Sure we still went thru several emotional stages -- kinda like the stages of grief -- denial, anger, acceptance. I still worry, still cry. But we take it one day at a time. Got into a routine with his medications, treatments so he can have a normal life.

Today our son is a normal, busy 4 1/2 year old. He goes to preschool. He just started taking skating lessons and thinks he wants to be a hockey player. Though not sure how he's going to manage that if I keep having to hold him up on his skates <img src="i/expressions/face-icon-small-smile.gif" border="0"> He's also in gymnastics and last year took swimming lessons. Currently I'm a little stressed because next year he'll be starting regular public school. I'm sure he'll do fine. It's just another one of those milestones and a BIG unknown for a worrier like me.

Oh and during appointments, I always bring along a notebook with questions and to write down things the doctor says. It helps to remember because it's sometimes hard to concentrate on what they're saying while still trying to keep your child occupied.

 

[Ratatosk]

I was going to add that when the test results came back -- I cried non-stop for hours. Worried about our son's future. My husband worried that he was going to be the lonely, sickly child, in and out of the hospital that nobody would play with... All I'd known about CF was from a television medical drama where a teenager was very sick.

And then, the CF doctor walked in and took us to a conference room and explained about CF -- history, different aspects about what areas the disease affects, warned us about looking things up in the hospital library or on the internet... And then he called up to the CF floor and asked one of his patients to come down and visit with us. We were shocked. A NORMAL looking, normal acting teenager.

Sure we still went thru several emotional stages -- kinda like the stages of grief -- denial, anger, acceptance. I still worry, still cry. But we take it one day at a time. Got into a routine with his medications, treatments so he can have a normal life.

Today our son is a normal, busy 4 1/2 year old. He goes to preschool. He just started taking skating lessons and thinks he wants to be a hockey player. Though not sure how he's going to manage that if I keep having to hold him up on his skates <img src="i/expressions/face-icon-small-smile.gif" border="0"> He's also in gymnastics and last year took swimming lessons. Currently I'm a little stressed because next year he'll be starting regular public school. I'm sure he'll do fine. It's just another one of those milestones and a BIG unknown for a worrier like me.

Oh and during appointments, I always bring along a notebook with questions and to write down things the doctor says. It helps to remember because it's sometimes hard to concentrate on what they're saying while still trying to keep your child occupied.

 

[JORDYSMOM]

Hi Oskar & welcome to the site. Congratulations on your new baby!

I know you are scared, and confused. All of us parents have been where you are. My son wasn't a newborn when he was diagnosed; he was 15. So you see, sometimes the symptoms are not so obvious. You are so fortunate to have found out early. I know you don't feel fortunate right now, but it is very beneficial to have an early diagnosis. You now have the opportunity to be proactive in your son's care.

Waiting the 9 days until his clinic appt. will be just fine. It will probably be a very long appt., so be prepared to stay there a while. There is a lot to learn, but you can take it one step at a time. The most important thing to remember is to enjoy that baby. You will have plenty of time to deal with CF.

Stacey

 

[JORDYSMOM]

Hi Oskar & welcome to the site. Congratulations on your new baby!

I know you are scared, and confused. All of us parents have been where you are. My son wasn't a newborn when he was diagnosed; he was 15. So you see, sometimes the symptoms are not so obvious. You are so fortunate to have found out early. I know you don't feel fortunate right now, but it is very beneficial to have an early diagnosis. You now have the opportunity to be proactive in your son's care.

Waiting the 9 days until his clinic appt. will be just fine. It will probably be a very long appt., so be prepared to stay there a while. There is a lot to learn, but you can take it one step at a time. The most important thing to remember is to enjoy that baby. You will have plenty of time to deal with CF.

Stacey

 

[JORDYSMOM]

Hi Oskar & welcome to the site. Congratulations on your new baby!

I know you are scared, and confused. All of us parents have been where you are. My son wasn't a newborn when he was diagnosed; he was 15. So you see, sometimes the symptoms are not so obvious. You are so fortunate to have found out early. I know you don't feel fortunate right now, but it is very beneficial to have an early diagnosis. You now have the opportunity to be proactive in your son's care.

Waiting the 9 days until his clinic appt. will be just fine. It will probably be a very long appt., so be prepared to stay there a while. There is a lot to learn, but you can take it one step at a time. The most important thing to remember is to enjoy that baby. You will have plenty of time to deal with CF.

Stacey

 

[JORDYSMOM]

Hi Oskar & welcome to the site. Congratulations on your new baby!

I know you are scared, and confused. All of us parents have been where you are. My son wasn't a newborn when he was diagnosed; he was 15. So you see, sometimes the symptoms are not so obvious. You are so fortunate to have found out early. I know you don't feel fortunate right now, but it is very beneficial to have an early diagnosis. You now have the opportunity to be proactive in your son's care.

Waiting the 9 days until his clinic appt. will be just fine. It will probably be a very long appt., so be prepared to stay there a while. There is a lot to learn, but you can take it one step at a time. The most important thing to remember is to enjoy that baby. You will have plenty of time to deal with CF.

Stacey

 

[JORDYSMOM]

Hi Oskar & welcome to the site. Congratulations on your new baby!

I know you are scared, and confused. All of us parents have been where you are. My son wasn't a newborn when he was diagnosed; he was 15. So you see, sometimes the symptoms are not so obvious. You are so fortunate to have found out early. I know you don't feel fortunate right now, but it is very beneficial to have an early diagnosis. You now have the opportunity to be proactive in your son's care.

Waiting the 9 days until his clinic appt. will be just fine. It will probably be a very long appt., so be prepared to stay there a while. There is a lot to learn, but you can take it one step at a time. The most important thing to remember is to enjoy that baby. You will have plenty of time to deal with CF.

Stacey

 

[MargaritaChic]

Welcome to the site. You will find many helpful individuals and information here.

My baby girl is 1 month old. She was diagnosed at 7 days old, because my state screens all newborns for Cystic Fibrosis.

I was shocked when the doctor told me my daughter has CF. Like you, I did not know about the disease. I was scared and sad.

Once peice of advice I have for you. Stop looking at the information on the internet. Alot of the information is out of date and much of it is scary and not necessarily true for your child. If you must look at anything, I suggest going to www.cff.org .

Is this your first child?

My daughter does not have any symptoms either. One thing I know now from going to the CF Center is that my daughter has pancreatic problems which cause her stools (poop) to smell and be more frequent than it should be. But I would never have noticed because I just thought it was normal infant poop. And not all CF children have this. So your child may or may not.

You mentioned that the blood test was done becasue of some 'concerns'. What were they?

Do you know what the doctor said about the genetic test they did?

Everything you are feeling is very normal. The CF Center will be able to answer many of your questions and concerns. Some of their information will be reassuring. Some of it may be overwhelming.

The next few days and weeks may be overwhelming. Please feel free to post any and all questions you have. The people here are very willing to answer any question and offer their experiences.

Take care of yourself and your family. Congratulations on your new baby.

 

[MargaritaChic]

Welcome to the site. You will find many helpful individuals and information here.

My baby girl is 1 month old. She was diagnosed at 7 days old, because my state screens all newborns for Cystic Fibrosis.

I was shocked when the doctor told me my daughter has CF. Like you, I did not know about the disease. I was scared and sad.

Once peice of advice I have for you. Stop looking at the information on the internet. Alot of the information is out of date and much of it is scary and not necessarily true for your child. If you must look at anything, I suggest going to www.cff.org .

Is this your first child?

My daughter does not have any symptoms either. One thing I know now from going to the CF Center is that my daughter has pancreatic problems which cause her stools (poop) to smell and be more frequent than it should be. But I would never have noticed because I just thought it was normal infant poop. And not all CF children have this. So your child may or may not.

You mentioned that the blood test was done becasue of some 'concerns'. What were they?

Do you know what the doctor said about the genetic test they did?

Everything you are feeling is very normal. The CF Center will be able to answer many of your questions and concerns. Some of their information will be reassuring. Some of it may be overwhelming.

The next few days and weeks may be overwhelming. Please feel free to post any and all questions you have. The people here are very willing to answer any question and offer their experiences.

Take care of yourself and your family. Congratulations on your new baby.

 

[MargaritaChic]

Welcome to the site. You will find many helpful individuals and information here.

My baby girl is 1 month old. She was diagnosed at 7 days old, because my state screens all newborns for Cystic Fibrosis.

I was shocked when the doctor told me my daughter has CF. Like you, I did not know about the disease. I was scared and sad.

Once peice of advice I have for you. Stop looking at the information on the internet. Alot of the information is out of date and much of it is scary and not necessarily true for your child. If you must look at anything, I suggest going to www.cff.org .

Is this your first child?

My daughter does not have any symptoms either. One thing I know now from going to the CF Center is that my daughter has pancreatic problems which cause her stools (poop) to smell and be more frequent than it should be. But I would never have noticed because I just thought it was normal infant poop. And not all CF children have this. So your child may or may not.

You mentioned that the blood test was done becasue of some 'concerns'. What were they?

Do you know what the doctor said about the genetic test they did?

Everything you are feeling is very normal. The CF Center will be able to answer many of your questions and concerns. Some of their information will be reassuring. Some of it may be overwhelming.

The next few days and weeks may be overwhelming. Please feel free to post any and all questions you have. The people here are very willing to answer any question and offer their experiences.

Take care of yourself and your family. Congratulations on your new baby.

 

[MargaritaChic]

Welcome to the site. You will find many helpful individuals and information here.

My baby girl is 1 month old. She was diagnosed at 7 days old, because my state screens all newborns for Cystic Fibrosis.

I was shocked when the doctor told me my daughter has CF. Like you, I did not know about the disease. I was scared and sad.

Once peice of advice I have for you. Stop looking at the information on the internet. Alot of the information is out of date and much of it is scary and not necessarily true for your child. If you must look at anything, I suggest going to www.cff.org .

Is this your first child?

My daughter does not have any symptoms either. One thing I know now from going to the CF Center is that my daughter has pancreatic problems which cause her stools (poop) to smell and be more frequent than it should be. But I would never have noticed because I just thought it was normal infant poop. And not all CF children have this. So your child may or may not.

You mentioned that the blood test was done becasue of some 'concerns'. What were they?

Do you know what the doctor said about the genetic test they did?

Everything you are feeling is very normal. The CF Center will be able to answer many of your questions and concerns. Some of their information will be reassuring. Some of it may be overwhelming.

The next few days and weeks may be overwhelming. Please feel free to post any and all questions you have. The people here are very willing to answer any question and offer their experiences.

Take care of yourself and your family. Congratulations on your new baby.

 

[MargaritaChic]

Welcome to the site. You will find many helpful individuals and information here.

My baby girl is 1 month old. She was diagnosed at 7 days old, because my state screens all newborns for Cystic Fibrosis.

I was shocked when the doctor told me my daughter has CF. Like you, I did not know about the disease. I was scared and sad.

Once peice of advice I have for you. Stop looking at the information on the internet. Alot of the information is out of date and much of it is scary and not necessarily true for your child. If you must look at anything, I suggest going to www.cff.org .

Is this your first child?

My daughter does not have any symptoms either. One thing I know now from going to the CF Center is that my daughter has pancreatic problems which cause her stools (poop) to smell and be more frequent than it should be. But I would never have noticed because I just thought it was normal infant poop. And not all CF children have this. So your child may or may not.

You mentioned that the blood test was done becasue of some 'concerns'. What were they?

Do you know what the doctor said about the genetic test they did?

Everything you are feeling is very normal. The CF Center will be able to answer many of your questions and concerns. Some of their information will be reassuring. Some of it may be overwhelming.

The next few days and weeks may be overwhelming. Please feel free to post any and all questions you have. The people here are very willing to answer any question and offer their experiences.

Take care of yourself and your family. Congratulations on your new baby.

 

[Kosar]

Hello everybody,

Thank you very much for your great answers and support.

This is what happened. Our Screening test was positive, and the second one as well. Now I could not wait anymore and we just went to the CF Center today and talked to the leading professor. He did some test (including sweat tests) and told us that the previous diagnosis was false. Our son is healthy. He said we should do the tests again in one year, but there is a high chance that the previous bad number are from something else.

So that is really great news, we are really relieved.

After reading so much I know feel stongly with any family who is in such a situation. I will send my best thoughts to all of you.

Thank you,

Oskar

 

[Kosar]

Hello everybody,

Thank you very much for your great answers and support.

This is what happened. Our Screening test was positive, and the second one as well. Now I could not wait anymore and we just went to the CF Center today and talked to the leading professor. He did some test (including sweat tests) and told us that the previous diagnosis was false. Our son is healthy. He said we should do the tests again in one year, but there is a high chance that the previous bad number are from something else.

So that is really great news, we are really relieved.

After reading so much I know feel stongly with any family who is in such a situation. I will send my best thoughts to all of you.

Thank you,

Oskar

 

[Kosar]

Hello everybody,

Thank you very much for your great answers and support.

This is what happened. Our Screening test was positive, and the second one as well. Now I could not wait anymore and we just went to the CF Center today and talked to the leading professor. He did some test (including sweat tests) and told us that the previous diagnosis was false. Our son is healthy. He said we should do the tests again in one year, but there is a high chance that the previous bad number are from something else.

So that is really great news, we are really relieved.

After reading so much I know feel stongly with any family who is in such a situation. I will send my best thoughts to all of you.

Thank you,

Oskar

 

[Kosar]

Hello everybody,

Thank you very much for your great answers and support.

This is what happened. Our Screening test was positive, and the second one as well. Now I could not wait anymore and we just went to the CF Center today and talked to the leading professor. He did some test (including sweat tests) and told us that the previous diagnosis was false. Our son is healthy. He said we should do the tests again in one year, but there is a high chance that the previous bad number are from something else.

So that is really great news, we are really relieved.

After reading so much I know feel stongly with any family who is in such a situation. I will send my best thoughts to all of you.

Thank you,

Oskar

 

[Kosar]

Hello everybody,

Thank you very much for your great answers and support.

This is what happened. Our Screening test was positive, and the second one as well. Now I could not wait anymore and we just went to the CF Center today and talked to the leading professor. He did some test (including sweat tests) and told us that the previous diagnosis was false. Our son is healthy. He said we should do the tests again in one year, but there is a high chance that the previous bad number are from something else.

So that is really great news, we are really relieved.

After reading so much I know feel stongly with any family who is in such a situation. I will send my best thoughts to all of you.

Thank you,

Oskar