Diagnosed today

Kosar · Jan 9, 2008

Hello,

First of all I want to say thank you to the creators of this site and it's great community! This is really amazing.

My wife and I were really speechless today in the morning when we received a phone call from the hospital. After some concerns we were asked to give a blood sample of our 6 weeks old son, and we did without much further thought. Today they called us stating that they have a positive result for CF and that we have to go to the center for Cystic Fibrosis in Moscow (we are Russian). They also said something about some genetic test they did. Since this phone call we really don't know what to say or do. I was crying for half the day after I started reading on the internet, and of all the different life stories connected to this illness. Now I have been reading for 12 hours straight, and I'm starting to get a little bit confused about the diagnosis.
Because the main thing is that we haven't noticed any of the stated symptoms with our son. And today when he was sweating strongly, I tasted his skin and sweat and it was not salty at all! And we also never saw any salt stains on his skin or anything like that. Furthermore he has been gaining weight very good, coming from 2,8kg to almost 5 now in 6 weeks. I believe this is at least a 4 pound gain in 6 weeks. He also grew significantly. So this gives me a little hope now I guess. However the fact the the lady from the hospital was saying that the did a gene test does not.

What do you think? We have an appointment at the center for CF now in 9 days! (crazy), and they will probably run the sweat test and other verification test on him. Does it make sense that we have none of the symptoms yet? Do they only appear on a later stage? Can we really wait for 9 days with the verification? Or should I try to get him tested somehow sooner.

What do you think are the most important steps for young parents to start living with this illness? I have a really hard time understanding.

Thank you very much in advance, I hope I didn't raise too many questions.
Best Regards from Moscow,
Oskar

Kosar · Jan 9, 2008

Hello,

First of all I want to say thank you to the creators of this site and it's great community! This is really amazing.

My wife and I were really speechless today in the morning when we received a phone call from the hospital. After some concerns we were asked to give a blood sample of our 6 weeks old son, and we did without much further thought. Today they called us stating that they have a positive result for CF and that we have to go to the center for Cystic Fibrosis in Moscow (we are Russian). They also said something about some genetic test they did. Since this phone call we really don't know what to say or do. I was crying for half the day after I started reading on the internet, and of all the different life stories connected to this illness. Now I have been reading for 12 hours straight, and I'm starting to get a little bit confused about the diagnosis.
Because the main thing is that we haven't noticed any of the stated symptoms with our son. And today when he was sweating strongly, I tasted his skin and sweat and it was not salty at all! And we also never saw any salt stains on his skin or anything like that. Furthermore he has been gaining weight very good, coming from 2,8kg to almost 5 now in 6 weeks. I believe this is at least a 4 pound gain in 6 weeks. He also grew significantly. So this gives me a little hope now I guess. However the fact the the lady from the hospital was saying that the did a gene test does not.

What do you think? We have an appointment at the center for CF now in 9 days! (crazy), and they will probably run the sweat test and other verification test on him. Does it make sense that we have none of the symptoms yet? Do they only appear on a later stage? Can we really wait for 9 days with the verification? Or should I try to get him tested somehow sooner.

What do you think are the most important steps for young parents to start living with this illness? I have a really hard time understanding.

Thank you very much in advance, I hope I didn't raise too many questions.
Best Regards from Moscow,
Oskar

Kosar · Jan 9, 2008

Hello,

First of all I want to say thank you to the creators of this site and it's great community! This is really amazing.

My wife and I were really speechless today in the morning when we received a phone call from the hospital. After some concerns we were asked to give a blood sample of our 6 weeks old son, and we did without much further thought. Today they called us stating that they have a positive result for CF and that we have to go to the center for Cystic Fibrosis in Moscow (we are Russian). They also said something about some genetic test they did. Since this phone call we really don't know what to say or do. I was crying for half the day after I started reading on the internet, and of all the different life stories connected to this illness. Now I have been reading for 12 hours straight, and I'm starting to get a little bit confused about the diagnosis.
Because the main thing is that we haven't noticed any of the stated symptoms with our son. And today when he was sweating strongly, I tasted his skin and sweat and it was not salty at all! And we also never saw any salt stains on his skin or anything like that. Furthermore he has been gaining weight very good, coming from 2,8kg to almost 5 now in 6 weeks. I believe this is at least a 4 pound gain in 6 weeks. He also grew significantly. So this gives me a little hope now I guess. However the fact the the lady from the hospital was saying that the did a gene test does not.

What do you think? We have an appointment at the center for CF now in 9 days! (crazy), and they will probably run the sweat test and other verification test on him. Does it make sense that we have none of the symptoms yet? Do they only appear on a later stage? Can we really wait for 9 days with the verification? Or should I try to get him tested somehow sooner.

What do you think are the most important steps for young parents to start living with this illness? I have a really hard time understanding.

Thank you very much in advance, I hope I didn't raise too many questions.
Best Regards from Moscow,
Oskar

Kosar · Jan 9, 2008

Hello,

First of all I want to say thank you to the creators of this site and it's great community! This is really amazing.

My wife and I were really speechless today in the morning when we received a phone call from the hospital. After some concerns we were asked to give a blood sample of our 6 weeks old son, and we did without much further thought. Today they called us stating that they have a positive result for CF and that we have to go to the center for Cystic Fibrosis in Moscow (we are Russian). They also said something about some genetic test they did. Since this phone call we really don't know what to say or do. I was crying for half the day after I started reading on the internet, and of all the different life stories connected to this illness. Now I have been reading for 12 hours straight, and I'm starting to get a little bit confused about the diagnosis.
Because the main thing is that we haven't noticed any of the stated symptoms with our son. And today when he was sweating strongly, I tasted his skin and sweat and it was not salty at all! And we also never saw any salt stains on his skin or anything like that. Furthermore he has been gaining weight very good, coming from 2,8kg to almost 5 now in 6 weeks. I believe this is at least a 4 pound gain in 6 weeks. He also grew significantly. So this gives me a little hope now I guess. However the fact the the lady from the hospital was saying that the did a gene test does not.

What do you think? We have an appointment at the center for CF now in 9 days! (crazy), and they will probably run the sweat test and other verification test on him. Does it make sense that we have none of the symptoms yet? Do they only appear on a later stage? Can we really wait for 9 days with the verification? Or should I try to get him tested somehow sooner.

What do you think are the most important steps for young parents to start living with this illness? I have a really hard time understanding.

Thank you very much in advance, I hope I didn't raise too many questions.
Best Regards from Moscow,
Oskar

Kosar · Jan 9, 2008

Hello,

First of all I want to say thank you to the creators of this site and it's great community! This is really amazing.

My wife and I were really speechless today in the morning when we received a phone call from the hospital. After some concerns we were asked to give a blood sample of our 6 weeks old son, and we did without much further thought. Today they called us stating that they have a positive result for CF and that we have to go to the center for Cystic Fibrosis in Moscow (we are Russian). They also said something about some genetic test they did. Since this phone call we really don't know what to say or do. I was crying for half the day after I started reading on the internet, and of all the different life stories connected to this illness. Now I have been reading for 12 hours straight, and I'm starting to get a little bit confused about the diagnosis.
Because the main thing is that we haven't noticed any of the stated symptoms with our son. And today when he was sweating strongly, I tasted his skin and sweat and it was not salty at all! And we also never saw any salt stains on his skin or anything like that. Furthermore he has been gaining weight very good, coming from 2,8kg to almost 5 now in 6 weeks. I believe this is at least a 4 pound gain in 6 weeks. He also grew significantly. So this gives me a little hope now I guess. However the fact the the lady from the hospital was saying that the did a gene test does not.

What do you think? We have an appointment at the center for CF now in 9 days! (crazy), and they will probably run the sweat test and other verification test on him. Does it make sense that we have none of the symptoms yet? Do they only appear on a later stage? Can we really wait for 9 days with the verification? Or should I try to get him tested somehow sooner.

What do you think are the most important steps for young parents to start living with this illness? I have a really hard time understanding.

Thank you very much in advance, I hope I didn't raise too many questions.
Best Regards from Moscow,
Oskar

TonyaH · Jan 9, 2008

Hi Oskar,
Welcome to the site. I am sorry to welcome you under these circumstances, but hope you will find this community as helpful as I have.

My son is 9 years old and we recieved our diagnosis when he was 8 weeks old. All of the questions you have are very normal questions. The best advice I can give you on this first day of life with CF is to take a breath and let this sink in. You are going to have much of this explained to you at your first appointment in nine days. But, you will also continue to learn. Nine years later I am still learning about the affect CF has on the body and ways to treat this disease.

As far as symptoms go, some people live years without knowing they have CF. I have a friend who was not diagnosed until she was in her 40s! Others, like my son, have symptoms from day one. This is a funny disease...no rhyme or reason. But the more you learn about maintenance meds and therapy available, the more in-control you will feel.

Please visit often and ask any questions you wish. We are all very willing to help!

TonyaH · Jan 9, 2008

Hi Oskar,
Welcome to the site. I am sorry to welcome you under these circumstances, but hope you will find this community as helpful as I have.

My son is 9 years old and we recieved our diagnosis when he was 8 weeks old. All of the questions you have are very normal questions. The best advice I can give you on this first day of life with CF is to take a breath and let this sink in. You are going to have much of this explained to you at your first appointment in nine days. But, you will also continue to learn. Nine years later I am still learning about the affect CF has on the body and ways to treat this disease.

As far as symptoms go, some people live years without knowing they have CF. I have a friend who was not diagnosed until she was in her 40s! Others, like my son, have symptoms from day one. This is a funny disease...no rhyme or reason. But the more you learn about maintenance meds and therapy available, the more in-control you will feel.

Please visit often and ask any questions you wish. We are all very willing to help!

TonyaH · Jan 9, 2008

Hi Oskar,
Welcome to the site. I am sorry to welcome you under these circumstances, but hope you will find this community as helpful as I have.

My son is 9 years old and we recieved our diagnosis when he was 8 weeks old. All of the questions you have are very normal questions. The best advice I can give you on this first day of life with CF is to take a breath and let this sink in. You are going to have much of this explained to you at your first appointment in nine days. But, you will also continue to learn. Nine years later I am still learning about the affect CF has on the body and ways to treat this disease.

As far as symptoms go, some people live years without knowing they have CF. I have a friend who was not diagnosed until she was in her 40s! Others, like my son, have symptoms from day one. This is a funny disease...no rhyme or reason. But the more you learn about maintenance meds and therapy available, the more in-control you will feel.

Please visit often and ask any questions you wish. We are all very willing to help!

TonyaH · Jan 9, 2008

Hi Oskar,
Welcome to the site. I am sorry to welcome you under these circumstances, but hope you will find this community as helpful as I have.

My son is 9 years old and we recieved our diagnosis when he was 8 weeks old. All of the questions you have are very normal questions. The best advice I can give you on this first day of life with CF is to take a breath and let this sink in. You are going to have much of this explained to you at your first appointment in nine days. But, you will also continue to learn. Nine years later I am still learning about the affect CF has on the body and ways to treat this disease.

As far as symptoms go, some people live years without knowing they have CF. I have a friend who was not diagnosed until she was in her 40s! Others, like my son, have symptoms from day one. This is a funny disease...no rhyme or reason. But the more you learn about maintenance meds and therapy available, the more in-control you will feel.

Please visit often and ask any questions you wish. We are all very willing to help!

TonyaH · Jan 9, 2008

Hi Oskar,
Welcome to the site. I am sorry to welcome you under these circumstances, but hope you will find this community as helpful as I have.

My son is 9 years old and we recieved our diagnosis when he was 8 weeks old. All of the questions you have are very normal questions. The best advice I can give you on this first day of life with CF is to take a breath and let this sink in. You are going to have much of this explained to you at your first appointment in nine days. But, you will also continue to learn. Nine years later I am still learning about the affect CF has on the body and ways to treat this disease.

As far as symptoms go, some people live years without knowing they have CF. I have a friend who was not diagnosed until she was in her 40s! Others, like my son, have symptoms from day one. This is a funny disease...no rhyme or reason. But the more you learn about maintenance meds and therapy available, the more in-control you will feel.

Please visit often and ask any questions you wish. We are all very willing to help!

Ratatosk · Jan 9, 2008

Ask away! Our son was diagnosed shortly after he was born because of a bowel obstruction. The same thick sticky mucus which can affect the lungs, can also cause issues with digestion. In his case his primary symptoms were digestive. He needs enzymes to digest his food -- mainly fats.

His doctor told us cfers are born with normal lungs; however, with age, infections, thick mucus -- the lungs will eventually become affected. CF is a progressive disease, but there are so many different variables. As Tonya pointed out, some people aren't diagnosed until they are adults.

At least knowing about CF right away, you can be proactive in your son's health and keep him healthy.

You indicated you're reading a lot about CF. Please realize that a LOT of the information out there is outdated. A well meaning friend gave me a book about CF that was from the late 90s prior to several CF drugs be approved. Life expectancy has increased...

Ratatosk · Jan 9, 2008

Ask away! Our son was diagnosed shortly after he was born because of a bowel obstruction. The same thick sticky mucus which can affect the lungs, can also cause issues with digestion. In his case his primary symptoms were digestive. He needs enzymes to digest his food -- mainly fats.

His doctor told us cfers are born with normal lungs; however, with age, infections, thick mucus -- the lungs will eventually become affected. CF is a progressive disease, but there are so many different variables. As Tonya pointed out, some people aren't diagnosed until they are adults.

At least knowing about CF right away, you can be proactive in your son's health and keep him healthy.

You indicated you're reading a lot about CF. Please realize that a LOT of the information out there is outdated. A well meaning friend gave me a book about CF that was from the late 90s prior to several CF drugs be approved. Life expectancy has increased...

Ratatosk · Jan 9, 2008

Ask away! Our son was diagnosed shortly after he was born because of a bowel obstruction. The same thick sticky mucus which can affect the lungs, can also cause issues with digestion. In his case his primary symptoms were digestive. He needs enzymes to digest his food -- mainly fats.

His doctor told us cfers are born with normal lungs; however, with age, infections, thick mucus -- the lungs will eventually become affected. CF is a progressive disease, but there are so many different variables. As Tonya pointed out, some people aren't diagnosed until they are adults.

At least knowing about CF right away, you can be proactive in your son's health and keep him healthy.

You indicated you're reading a lot about CF. Please realize that a LOT of the information out there is outdated. A well meaning friend gave me a book about CF that was from the late 90s prior to several CF drugs be approved. Life expectancy has increased...

Ratatosk · Jan 9, 2008

Ask away! Our son was diagnosed shortly after he was born because of a bowel obstruction. The same thick sticky mucus which can affect the lungs, can also cause issues with digestion. In his case his primary symptoms were digestive. He needs enzymes to digest his food -- mainly fats.

His doctor told us cfers are born with normal lungs; however, with age, infections, thick mucus -- the lungs will eventually become affected. CF is a progressive disease, but there are so many different variables. As Tonya pointed out, some people aren't diagnosed until they are adults.

At least knowing about CF right away, you can be proactive in your son's health and keep him healthy.

You indicated you're reading a lot about CF. Please realize that a LOT of the information out there is outdated. A well meaning friend gave me a book about CF that was from the late 90s prior to several CF drugs be approved. Life expectancy has increased...

Ratatosk · Jan 9, 2008

Ask away! Our son was diagnosed shortly after he was born because of a bowel obstruction. The same thick sticky mucus which can affect the lungs, can also cause issues with digestion. In his case his primary symptoms were digestive. He needs enzymes to digest his food -- mainly fats.

His doctor told us cfers are born with normal lungs; however, with age, infections, thick mucus -- the lungs will eventually become affected. CF is a progressive disease, but there are so many different variables. As Tonya pointed out, some people aren't diagnosed until they are adults.

At least knowing about CF right away, you can be proactive in your son's health and keep him healthy.

You indicated you're reading a lot about CF. Please realize that a LOT of the information out there is outdated. A well meaning friend gave me a book about CF that was from the late 90s prior to several CF drugs be approved. Life expectancy has increased...

SuperRyan · Jan 9, 2008

Welcome Oskar

This forum will prove to be a great deal of support for you and your family. As TonyaH mentioned, you will learn so much more at your first CF clinic appointment. My son was diagnosed when he was 10 months old b/c he had an unresolved pneumonia. I remember feeling exactly what you are feeling right now.

Use this time to write down some of the main questions that you have. This will help you to organize your thoughts and start wrapping your head around this tremendous change in your family's life. It can be very overwhelming with all the information that you will find on the internet so you have to try to absorb it one piece at a time. I promise you, however, that before you know it, you will find yourself in a routine with this illness and able to give advice to others.

Take it one day at a time and enjoy your son because he will grow up very fast. Happy to meet you and looking forward to connecting with you more on this site.

SuperRyan · Jan 9, 2008

Welcome Oskar

This forum will prove to be a great deal of support for you and your family. As TonyaH mentioned, you will learn so much more at your first CF clinic appointment. My son was diagnosed when he was 10 months old b/c he had an unresolved pneumonia. I remember feeling exactly what you are feeling right now.

Use this time to write down some of the main questions that you have. This will help you to organize your thoughts and start wrapping your head around this tremendous change in your family's life. It can be very overwhelming with all the information that you will find on the internet so you have to try to absorb it one piece at a time. I promise you, however, that before you know it, you will find yourself in a routine with this illness and able to give advice to others.

Take it one day at a time and enjoy your son because he will grow up very fast. Happy to meet you and looking forward to connecting with you more on this site.

SuperRyan · Jan 9, 2008

Welcome Oskar

This forum will prove to be a great deal of support for you and your family. As TonyaH mentioned, you will learn so much more at your first CF clinic appointment. My son was diagnosed when he was 10 months old b/c he had an unresolved pneumonia. I remember feeling exactly what you are feeling right now.

Use this time to write down some of the main questions that you have. This will help you to organize your thoughts and start wrapping your head around this tremendous change in your family's life. It can be very overwhelming with all the information that you will find on the internet so you have to try to absorb it one piece at a time. I promise you, however, that before you know it, you will find yourself in a routine with this illness and able to give advice to others.

Take it one day at a time and enjoy your son because he will grow up very fast. Happy to meet you and looking forward to connecting with you more on this site.

SuperRyan · Jan 9, 2008

Welcome Oskar

This forum will prove to be a great deal of support for you and your family. As TonyaH mentioned, you will learn so much more at your first CF clinic appointment. My son was diagnosed when he was 10 months old b/c he had an unresolved pneumonia. I remember feeling exactly what you are feeling right now.

Use this time to write down some of the main questions that you have. This will help you to organize your thoughts and start wrapping your head around this tremendous change in your family's life. It can be very overwhelming with all the information that you will find on the internet so you have to try to absorb it one piece at a time. I promise you, however, that before you know it, you will find yourself in a routine with this illness and able to give advice to others.

Take it one day at a time and enjoy your son because he will grow up very fast. Happy to meet you and looking forward to connecting with you more on this site.

SuperRyan · Jan 9, 2008

Welcome Oskar

This forum will prove to be a great deal of support for you and your family. As TonyaH mentioned, you will learn so much more at your first CF clinic appointment. My son was diagnosed when he was 10 months old b/c he had an unresolved pneumonia. I remember feeling exactly what you are feeling right now.

Use this time to write down some of the main questions that you have. This will help you to organize your thoughts and start wrapping your head around this tremendous change in your family's life. It can be very overwhelming with all the information that you will find on the internet so you have to try to absorb it one piece at a time. I promise you, however, that before you know it, you will find yourself in a routine with this illness and able to give advice to others.

Take it one day at a time and enjoy your son because he will grow up very fast. Happy to meet you and looking forward to connecting with you more on this site.

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