A little worried

sheree2065 · Nov 10, 2007

Hi, My name is Sheree. My little girl Jordan was diagnosed a little over 2 months ago. Double df508 from the new born testing. Jordan is almost 4 months old.
I'm feeling a little down and stressed out and have been for about a week.
Jordan has had a cold (several different ones) for the past 3 months.
please someone tell me this gets easier. we live in Jacksonville Florida
so I know she's getting some of the best care in the world. There are just somedays I can't stop crying. I know this isn't good for any of us but I just can't help it. Sorry to sound like a baby but it's been a very rough week with her being sick again. I would like to here some of the experinces from people with the ddf508 or children with it.. The Dr. said this is the most common type and also the worse. thank you for listening
Sheree
Mother of 7
Jordan 4months dx at 2 months Stephen 2 not tested yet
other 5 from different fathers

sheree2065 · Nov 10, 2007

Hi, My name is Sheree. My little girl Jordan was diagnosed a little over 2 months ago. Double df508 from the new born testing. Jordan is almost 4 months old.
I'm feeling a little down and stressed out and have been for about a week.
Jordan has had a cold (several different ones) for the past 3 months.
please someone tell me this gets easier. we live in Jacksonville Florida
so I know she's getting some of the best care in the world. There are just somedays I can't stop crying. I know this isn't good for any of us but I just can't help it. Sorry to sound like a baby but it's been a very rough week with her being sick again. I would like to here some of the experinces from people with the ddf508 or children with it.. The Dr. said this is the most common type and also the worse. thank you for listening
Sheree
Mother of 7
Jordan 4months dx at 2 months Stephen 2 not tested yet
other 5 from different fathers

sheree2065 · Nov 10, 2007

Hi, My name is Sheree. My little girl Jordan was diagnosed a little over 2 months ago. Double df508 from the new born testing. Jordan is almost 4 months old.
I'm feeling a little down and stressed out and have been for about a week.
Jordan has had a cold (several different ones) for the past 3 months.
please someone tell me this gets easier. we live in Jacksonville Florida
so I know she's getting some of the best care in the world. There are just somedays I can't stop crying. I know this isn't good for any of us but I just can't help it. Sorry to sound like a baby but it's been a very rough week with her being sick again. I would like to here some of the experinces from people with the ddf508 or children with it.. The Dr. said this is the most common type and also the worse. thank you for listening
Sheree
Mother of 7
Jordan 4months dx at 2 months Stephen 2 not tested yet
other 5 from different fathers

sheree2065 · Nov 10, 2007

Hi, My name is Sheree. My little girl Jordan was diagnosed a little over 2 months ago. Double df508 from the new born testing. Jordan is almost 4 months old.
I'm feeling a little down and stressed out and have been for about a week.
Jordan has had a cold (several different ones) for the past 3 months.
please someone tell me this gets easier. we live in Jacksonville Florida
so I know she's getting some of the best care in the world. There are just somedays I can't stop crying. I know this isn't good for any of us but I just can't help it. Sorry to sound like a baby but it's been a very rough week with her being sick again. I would like to here some of the experinces from people with the ddf508 or children with it.. The Dr. said this is the most common type and also the worse. thank you for listening
Sheree
Mother of 7
Jordan 4months dx at 2 months Stephen 2 not tested yet
other 5 from different fathers

sheree2065 · Nov 10, 2007

Hi, My name is Sheree. My little girl Jordan was diagnosed a little over 2 months ago. Double df508 from the new born testing. Jordan is almost 4 months old.
I'm feeling a little down and stressed out and have been for about a week.
Jordan has had a cold (several different ones) for the past 3 months.
please someone tell me this gets easier. we live in Jacksonville Florida
so I know she's getting some of the best care in the world. There are just somedays I can't stop crying. I know this isn't good for any of us but I just can't help it. Sorry to sound like a baby but it's been a very rough week with her being sick again. I would like to here some of the experinces from people with the ddf508 or children with it.. The Dr. said this is the most common type and also the worse. thank you for listening
Sheree
Mother of 7
Jordan 4months dx at 2 months Stephen 2 not tested yet
other 5 from different fathers

izemmom · Nov 10, 2007

Hi Sheree,

I don't have much advice, just wanted to say welcome to the site, and you are not alone. All of the parents on the site have been where you are. (Although few of us have the added stress of 6 other kids!!!!). My daughter is 2 and there are still days when all I want to do is cry. But, those days are fewer now. In time, everything evens out and you find a new "normal".

It is hard when they are sick or in the hospital. And some months or several months at a time it seems like they are ALWAYS sick. But then things turn around. YOu are getting good care, and that's a blessing.

As far as DF508 being the most severe, well, statistically, that's probably true. IT's the most common mutation, so a lot is known about the outcomes. But, you will find with cf that there is SO much variation in how the different mutations affect individuals that it's impossible to say how someone having one combination or another will fare. And, it doesn't seem to me to be helpful to get hung up on the mutations anyway. I do now Emily's mutations, and I have researched them and am always interested to find an adult cfer with her same combination...but, all we can really do in the end is give her the best care we can for right now, whatever symptoms and experiences she is having.

That being said, there are lots of double F508's here and I"m sure some of them will respond. You might also want to post in the families or adults section...I'm not sure everyone comes to this board.

Please continue to post here. This has been jsut an amazing source of information and SUPPORT for me when I have those bad days.

Here's hoping that Jordan gets free from those colds soon. It is SOOOO hard when such a little one is sick - no sleep for mom! Take care of yourself, and please don't hesitate to let us know if you need anything.

izemmom · Nov 10, 2007

Hi Sheree,

I don't have much advice, just wanted to say welcome to the site, and you are not alone. All of the parents on the site have been where you are. (Although few of us have the added stress of 6 other kids!!!!). My daughter is 2 and there are still days when all I want to do is cry. But, those days are fewer now. In time, everything evens out and you find a new "normal".

It is hard when they are sick or in the hospital. And some months or several months at a time it seems like they are ALWAYS sick. But then things turn around. YOu are getting good care, and that's a blessing.

As far as DF508 being the most severe, well, statistically, that's probably true. IT's the most common mutation, so a lot is known about the outcomes. But, you will find with cf that there is SO much variation in how the different mutations affect individuals that it's impossible to say how someone having one combination or another will fare. And, it doesn't seem to me to be helpful to get hung up on the mutations anyway. I do now Emily's mutations, and I have researched them and am always interested to find an adult cfer with her same combination...but, all we can really do in the end is give her the best care we can for right now, whatever symptoms and experiences she is having.

That being said, there are lots of double F508's here and I"m sure some of them will respond. You might also want to post in the families or adults section...I'm not sure everyone comes to this board.

Please continue to post here. This has been jsut an amazing source of information and SUPPORT for me when I have those bad days.

Here's hoping that Jordan gets free from those colds soon. It is SOOOO hard when such a little one is sick - no sleep for mom! Take care of yourself, and please don't hesitate to let us know if you need anything.

izemmom · Nov 10, 2007

Hi Sheree,

I don't have much advice, just wanted to say welcome to the site, and you are not alone. All of the parents on the site have been where you are. (Although few of us have the added stress of 6 other kids!!!!). My daughter is 2 and there are still days when all I want to do is cry. But, those days are fewer now. In time, everything evens out and you find a new "normal".

It is hard when they are sick or in the hospital. And some months or several months at a time it seems like they are ALWAYS sick. But then things turn around. YOu are getting good care, and that's a blessing.

As far as DF508 being the most severe, well, statistically, that's probably true. IT's the most common mutation, so a lot is known about the outcomes. But, you will find with cf that there is SO much variation in how the different mutations affect individuals that it's impossible to say how someone having one combination or another will fare. And, it doesn't seem to me to be helpful to get hung up on the mutations anyway. I do now Emily's mutations, and I have researched them and am always interested to find an adult cfer with her same combination...but, all we can really do in the end is give her the best care we can for right now, whatever symptoms and experiences she is having.

That being said, there are lots of double F508's here and I"m sure some of them will respond. You might also want to post in the families or adults section...I'm not sure everyone comes to this board.

Please continue to post here. This has been jsut an amazing source of information and SUPPORT for me when I have those bad days.

Here's hoping that Jordan gets free from those colds soon. It is SOOOO hard when such a little one is sick - no sleep for mom! Take care of yourself, and please don't hesitate to let us know if you need anything.

izemmom · Nov 10, 2007

Hi Sheree,

I don't have much advice, just wanted to say welcome to the site, and you are not alone. All of the parents on the site have been where you are. (Although few of us have the added stress of 6 other kids!!!!). My daughter is 2 and there are still days when all I want to do is cry. But, those days are fewer now. In time, everything evens out and you find a new "normal".

It is hard when they are sick or in the hospital. And some months or several months at a time it seems like they are ALWAYS sick. But then things turn around. YOu are getting good care, and that's a blessing.

As far as DF508 being the most severe, well, statistically, that's probably true. IT's the most common mutation, so a lot is known about the outcomes. But, you will find with cf that there is SO much variation in how the different mutations affect individuals that it's impossible to say how someone having one combination or another will fare. And, it doesn't seem to me to be helpful to get hung up on the mutations anyway. I do now Emily's mutations, and I have researched them and am always interested to find an adult cfer with her same combination...but, all we can really do in the end is give her the best care we can for right now, whatever symptoms and experiences she is having.

That being said, there are lots of double F508's here and I"m sure some of them will respond. You might also want to post in the families or adults section...I'm not sure everyone comes to this board.

Please continue to post here. This has been jsut an amazing source of information and SUPPORT for me when I have those bad days.

Here's hoping that Jordan gets free from those colds soon. It is SOOOO hard when such a little one is sick - no sleep for mom! Take care of yourself, and please don't hesitate to let us know if you need anything.

izemmom · Nov 10, 2007

Hi Sheree,

I don't have much advice, just wanted to say welcome to the site, and you are not alone. All of the parents on the site have been where you are. (Although few of us have the added stress of 6 other kids!!!!). My daughter is 2 and there are still days when all I want to do is cry. But, those days are fewer now. In time, everything evens out and you find a new "normal".

It is hard when they are sick or in the hospital. And some months or several months at a time it seems like they are ALWAYS sick. But then things turn around. YOu are getting good care, and that's a blessing.

As far as DF508 being the most severe, well, statistically, that's probably true. IT's the most common mutation, so a lot is known about the outcomes. But, you will find with cf that there is SO much variation in how the different mutations affect individuals that it's impossible to say how someone having one combination or another will fare. And, it doesn't seem to me to be helpful to get hung up on the mutations anyway. I do now Emily's mutations, and I have researched them and am always interested to find an adult cfer with her same combination...but, all we can really do in the end is give her the best care we can for right now, whatever symptoms and experiences she is having.

That being said, there are lots of double F508's here and I"m sure some of them will respond. You might also want to post in the families or adults section...I'm not sure everyone comes to this board.

Please continue to post here. This has been jsut an amazing source of information and SUPPORT for me when I have those bad days.

Here's hoping that Jordan gets free from those colds soon. It is SOOOO hard when such a little one is sick - no sleep for mom! Take care of yourself, and please don't hesitate to let us know if you need anything.

Rickiesmom · Nov 10, 2007

Sheree,

Hi, I too have a son with the same mutation ddf508 he was just diagnosed about a month ago...He's six years old and doing so much better since dx. When he was a baby he was sick all the time and no one mentioned cf to us. My point is now that he's been properly dx he's doing great. PM me we have a lot in common! Take care as everyone here has told me, it does get better and you'll get used to it...

Carey

Rickiesmom · Nov 10, 2007

Sheree,

Hi, I too have a son with the same mutation ddf508 he was just diagnosed about a month ago...He's six years old and doing so much better since dx. When he was a baby he was sick all the time and no one mentioned cf to us. My point is now that he's been properly dx he's doing great. PM me we have a lot in common! Take care as everyone here has told me, it does get better and you'll get used to it...

Carey

Rickiesmom · Nov 10, 2007

Sheree,

Hi, I too have a son with the same mutation ddf508 he was just diagnosed about a month ago...He's six years old and doing so much better since dx. When he was a baby he was sick all the time and no one mentioned cf to us. My point is now that he's been properly dx he's doing great. PM me we have a lot in common! Take care as everyone here has told me, it does get better and you'll get used to it...

Carey

Rickiesmom · Nov 10, 2007

Sheree,

Hi, I too have a son with the same mutation ddf508 he was just diagnosed about a month ago...He's six years old and doing so much better since dx. When he was a baby he was sick all the time and no one mentioned cf to us. My point is now that he's been properly dx he's doing great. PM me we have a lot in common! Take care as everyone here has told me, it does get better and you'll get used to it...

Carey

Rickiesmom · Nov 10, 2007

Sheree,

Hi, I too have a son with the same mutation ddf508 he was just diagnosed about a month ago...He's six years old and doing so much better since dx. When he was a baby he was sick all the time and no one mentioned cf to us. My point is now that he's been properly dx he's doing great. PM me we have a lot in common! Take care as everyone here has told me, it does get better and you'll get used to it...

Carey

Momof4 · Nov 11, 2007

Hi Sheree,
I know how you feel .I have two girls who were dx in Aug.
My older daughter(13) was tested and proved to have double d508. We are assuming my younger daughter(8) also is double d508.I know about the crying,crying,crying. I do most of that in the bathroom. I do not want my girls to see me affraid. I think it is important to have strong faith, and a strong support system. I can tell you it will get easier. Then it will get hard, and then easier again.It's like a roller coaster. If nothing else,you really get an oppertuinity to enjoy every minute you get to look at them. But boy does it really stink. The questions will start from her soon, so you better pull yourself up and prepare yourself to dig in! God know you are a good Mom, and have been given a job, now be strong! Dry your eyes and lean on as many people you have to to get through these rough patches.(God knows I have!) Things will get easier.

Momof4-Andrew 17( carrier)-Meg 13 (double d508)-Katie 8( double d508)-Patrick 7 (no cf)

Momof4 · Nov 11, 2007

Hi Sheree,
I know how you feel .I have two girls who were dx in Aug.
My older daughter(13) was tested and proved to have double d508. We are assuming my younger daughter(8) also is double d508.I know about the crying,crying,crying. I do most of that in the bathroom. I do not want my girls to see me affraid. I think it is important to have strong faith, and a strong support system. I can tell you it will get easier. Then it will get hard, and then easier again.It's like a roller coaster. If nothing else,you really get an oppertuinity to enjoy every minute you get to look at them. But boy does it really stink. The questions will start from her soon, so you better pull yourself up and prepare yourself to dig in! God know you are a good Mom, and have been given a job, now be strong! Dry your eyes and lean on as many people you have to to get through these rough patches.(God knows I have!) Things will get easier.

Momof4-Andrew 17( carrier)-Meg 13 (double d508)-Katie 8( double d508)-Patrick 7 (no cf)

Momof4 · Nov 11, 2007

Hi Sheree,
I know how you feel .I have two girls who were dx in Aug.
My older daughter(13) was tested and proved to have double d508. We are assuming my younger daughter(8) also is double d508.I know about the crying,crying,crying. I do most of that in the bathroom. I do not want my girls to see me affraid. I think it is important to have strong faith, and a strong support system. I can tell you it will get easier. Then it will get hard, and then easier again.It's like a roller coaster. If nothing else,you really get an oppertuinity to enjoy every minute you get to look at them. But boy does it really stink. The questions will start from her soon, so you better pull yourself up and prepare yourself to dig in! God know you are a good Mom, and have been given a job, now be strong! Dry your eyes and lean on as many people you have to to get through these rough patches.(God knows I have!) Things will get easier.

Momof4-Andrew 17( carrier)-Meg 13 (double d508)-Katie 8( double d508)-Patrick 7 (no cf)

Momof4 · Nov 11, 2007

Hi Sheree,
I know how you feel .I have two girls who were dx in Aug.
My older daughter(13) was tested and proved to have double d508. We are assuming my younger daughter(8) also is double d508.I know about the crying,crying,crying. I do most of that in the bathroom. I do not want my girls to see me affraid. I think it is important to have strong faith, and a strong support system. I can tell you it will get easier. Then it will get hard, and then easier again.It's like a roller coaster. If nothing else,you really get an oppertuinity to enjoy every minute you get to look at them. But boy does it really stink. The questions will start from her soon, so you better pull yourself up and prepare yourself to dig in! God know you are a good Mom, and have been given a job, now be strong! Dry your eyes and lean on as many people you have to to get through these rough patches.(God knows I have!) Things will get easier.

Momof4-Andrew 17( carrier)-Meg 13 (double d508)-Katie 8( double d508)-Patrick 7 (no cf)

Momof4 · Nov 11, 2007

Hi Sheree,
I know how you feel .I have two girls who were dx in Aug.
My older daughter(13) was tested and proved to have double d508. We are assuming my younger daughter(8) also is double d508.I know about the crying,crying,crying. I do most of that in the bathroom. I do not want my girls to see me affraid. I think it is important to have strong faith, and a strong support system. I can tell you it will get easier. Then it will get hard, and then easier again.It's like a roller coaster. If nothing else,you really get an oppertuinity to enjoy every minute you get to look at them. But boy does it really stink. The questions will start from her soon, so you better pull yourself up and prepare yourself to dig in! God know you are a good Mom, and have been given a job, now be strong! Dry your eyes and lean on as many people you have to to get through these rough patches.(God knows I have!) Things will get easier.

Momof4-Andrew 17( carrier)-Meg 13 (double d508)-Katie 8( double d508)-Patrick 7 (no cf)

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