How is it with two kids with CF?

B

brewz2

Guest
Hi,

While I'm very much aware of what you're going through, I think I can somewhat put your mind at east when it comes to having two with CF. My daughter was dx'd at two, and when I got pregnant with my son a couple years later, we decided not to have amnio, and just wait til he was born. For some strange reason, my doctor insisted we didn't need to have anything done to check for bowel obstruction (which if i ever have another, i know now to insist)

Anyways, my children both have cf - df508, and they're both doing great. My daugher had tested for pseudomonas about a year before having my son, and she's been on tobi ever since. She hasn't cultured in quite a while, and my son who is almost three has not cultured for it at all.
They both get the typical colds and stuff, but nothing out of the norm to worry about. I try not to worry about tomorrow's problems.

I tend to agree with your husband when it comes to the support for each other. My daughter, who turns seven tomorrow, has been a tremendous help when it comes to helping her brother and being an example. He has to do everything she does, including their vests. He does his inhaler just like his big sister. She's even explained to him, in so many words, that "You have to take your applesauce - we have CF, and that's just the way it is!"

I think as they both grow, they'll have each other to lean on, and maybe not feel so alienated. I think and hope that they'll be well adjusted b/c it's just a way of life for them.

If I had to try to pull a positive out of this, it would be that they'll have someone to be there for each other that knows exactly what they're going through.

We of course were devastated when we found out a week after my son was born, but we already knew what we were dealing with, and that made it a little easier for us.

My daughter has a boy in her first grade class that was dx'd with an inoperable brain tumor at the beginning of the school year, and he's been going through so much this year, and it's so sad. I look at him and realize that there's so many people that have it much worse than we do, and I've realized that nobody is promised tomorrow, so be happy today for what you have.

I hope this helps, or puts it into perspective somewhat.

Tracey, mom to Sydney (Seven tomorrow!) and Seth (2)both w/cf df508
 
B

brewz2

Guest
Hi,

While I'm very much aware of what you're going through, I think I can somewhat put your mind at east when it comes to having two with CF. My daughter was dx'd at two, and when I got pregnant with my son a couple years later, we decided not to have amnio, and just wait til he was born. For some strange reason, my doctor insisted we didn't need to have anything done to check for bowel obstruction (which if i ever have another, i know now to insist)

Anyways, my children both have cf - df508, and they're both doing great. My daugher had tested for pseudomonas about a year before having my son, and she's been on tobi ever since. She hasn't cultured in quite a while, and my son who is almost three has not cultured for it at all.
They both get the typical colds and stuff, but nothing out of the norm to worry about. I try not to worry about tomorrow's problems.

I tend to agree with your husband when it comes to the support for each other. My daughter, who turns seven tomorrow, has been a tremendous help when it comes to helping her brother and being an example. He has to do everything she does, including their vests. He does his inhaler just like his big sister. She's even explained to him, in so many words, that "You have to take your applesauce - we have CF, and that's just the way it is!"

I think as they both grow, they'll have each other to lean on, and maybe not feel so alienated. I think and hope that they'll be well adjusted b/c it's just a way of life for them.

If I had to try to pull a positive out of this, it would be that they'll have someone to be there for each other that knows exactly what they're going through.

We of course were devastated when we found out a week after my son was born, but we already knew what we were dealing with, and that made it a little easier for us.

My daughter has a boy in her first grade class that was dx'd with an inoperable brain tumor at the beginning of the school year, and he's been going through so much this year, and it's so sad. I look at him and realize that there's so many people that have it much worse than we do, and I've realized that nobody is promised tomorrow, so be happy today for what you have.

I hope this helps, or puts it into perspective somewhat.

Tracey, mom to Sydney (Seven tomorrow!) and Seth (2)both w/cf df508
 
B

brewz2

Guest
Hi,

While I'm very much aware of what you're going through, I think I can somewhat put your mind at east when it comes to having two with CF. My daughter was dx'd at two, and when I got pregnant with my son a couple years later, we decided not to have amnio, and just wait til he was born. For some strange reason, my doctor insisted we didn't need to have anything done to check for bowel obstruction (which if i ever have another, i know now to insist)

Anyways, my children both have cf - df508, and they're both doing great. My daugher had tested for pseudomonas about a year before having my son, and she's been on tobi ever since. She hasn't cultured in quite a while, and my son who is almost three has not cultured for it at all.
They both get the typical colds and stuff, but nothing out of the norm to worry about. I try not to worry about tomorrow's problems.

I tend to agree with your husband when it comes to the support for each other. My daughter, who turns seven tomorrow, has been a tremendous help when it comes to helping her brother and being an example. He has to do everything she does, including their vests. He does his inhaler just like his big sister. She's even explained to him, in so many words, that "You have to take your applesauce - we have CF, and that's just the way it is!"

I think as they both grow, they'll have each other to lean on, and maybe not feel so alienated. I think and hope that they'll be well adjusted b/c it's just a way of life for them.

If I had to try to pull a positive out of this, it would be that they'll have someone to be there for each other that knows exactly what they're going through.

We of course were devastated when we found out a week after my son was born, but we already knew what we were dealing with, and that made it a little easier for us.

My daughter has a boy in her first grade class that was dx'd with an inoperable brain tumor at the beginning of the school year, and he's been going through so much this year, and it's so sad. I look at him and realize that there's so many people that have it much worse than we do, and I've realized that nobody is promised tomorrow, so be happy today for what you have.

I hope this helps, or puts it into perspective somewhat.

Tracey, mom to Sydney (Seven tomorrow!) and Seth (2)both w/cf df508
 
B

brewz2

Guest
Hi,

While I'm very much aware of what you're going through, I think I can somewhat put your mind at east when it comes to having two with CF. My daughter was dx'd at two, and when I got pregnant with my son a couple years later, we decided not to have amnio, and just wait til he was born. For some strange reason, my doctor insisted we didn't need to have anything done to check for bowel obstruction (which if i ever have another, i know now to insist)

Anyways, my children both have cf - df508, and they're both doing great. My daugher had tested for pseudomonas about a year before having my son, and she's been on tobi ever since. She hasn't cultured in quite a while, and my son who is almost three has not cultured for it at all.
They both get the typical colds and stuff, but nothing out of the norm to worry about. I try not to worry about tomorrow's problems.

I tend to agree with your husband when it comes to the support for each other. My daughter, who turns seven tomorrow, has been a tremendous help when it comes to helping her brother and being an example. He has to do everything she does, including their vests. He does his inhaler just like his big sister. She's even explained to him, in so many words, that "You have to take your applesauce - we have CF, and that's just the way it is!"

I think as they both grow, they'll have each other to lean on, and maybe not feel so alienated. I think and hope that they'll be well adjusted b/c it's just a way of life for them.

If I had to try to pull a positive out of this, it would be that they'll have someone to be there for each other that knows exactly what they're going through.

We of course were devastated when we found out a week after my son was born, but we already knew what we were dealing with, and that made it a little easier for us.

My daughter has a boy in her first grade class that was dx'd with an inoperable brain tumor at the beginning of the school year, and he's been going through so much this year, and it's so sad. I look at him and realize that there's so many people that have it much worse than we do, and I've realized that nobody is promised tomorrow, so be happy today for what you have.

I hope this helps, or puts it into perspective somewhat.

Tracey, mom to Sydney (Seven tomorrow!) and Seth (2)both w/cf df508
 
B

brewz2

Guest
Hi,
<br />
<br />While I'm very much aware of what you're going through, I think I can somewhat put your mind at east when it comes to having two with CF. My daughter was dx'd at two, and when I got pregnant with my son a couple years later, we decided not to have amnio, and just wait til he was born. For some strange reason, my doctor insisted we didn't need to have anything done to check for bowel obstruction (which if i ever have another, i know now to insist)
<br />
<br />Anyways, my children both have cf - df508, and they're both doing great. My daugher had tested for pseudomonas about a year before having my son, and she's been on tobi ever since. She hasn't cultured in quite a while, and my son who is almost three has not cultured for it at all.
<br />They both get the typical colds and stuff, but nothing out of the norm to worry about. I try not to worry about tomorrow's problems.
<br />
<br />I tend to agree with your husband when it comes to the support for each other. My daughter, who turns seven tomorrow, has been a tremendous help when it comes to helping her brother and being an example. He has to do everything she does, including their vests. He does his inhaler just like his big sister. She's even explained to him, in so many words, that "You have to take your applesauce - we have CF, and that's just the way it is!"
<br />
<br />I think as they both grow, they'll have each other to lean on, and maybe not feel so alienated. I think and hope that they'll be well adjusted b/c it's just a way of life for them.
<br />
<br />If I had to try to pull a positive out of this, it would be that they'll have someone to be there for each other that knows exactly what they're going through.
<br />
<br />We of course were devastated when we found out a week after my son was born, but we already knew what we were dealing with, and that made it a little easier for us.
<br />
<br />My daughter has a boy in her first grade class that was dx'd with an inoperable brain tumor at the beginning of the school year, and he's been going through so much this year, and it's so sad. I look at him and realize that there's so many people that have it much worse than we do, and I've realized that nobody is promised tomorrow, so be happy today for what you have.
<br />
<br />I hope this helps, or puts it into perspective somewhat.
<br />
<br />Tracey, mom to Sydney (Seven tomorrow!) and Seth (2)both w/cf df508
 
2

2sickkids

Guest
I found out I was having another baby right before my sons 1st b-day. Both have cf. It is not the same for them they have diffrent issues with it.
Both of them having it makes it normal to them. So I get less problems with them not wanting to do their treatments and meds. They seem to think it's odd that other people don't do the stuff they do.
They can pass germs but if you use precautions it's shouldn't be that much more of a problem then germs from any other person. I have found that my kids don't get sick at the same time. They also don't culture the same things when they do culture.
Bright bowel showed in both of my sons ultrasounds. I lucked out and it didn't cause issue at birth. I know that some other things can do that as well. Google bright bowel and see what it tells you.
Fear won't do any good. Having kids is full of what if's. Even if the kids are heathy.

Mom of 2w/cf
 
2

2sickkids

Guest
I found out I was having another baby right before my sons 1st b-day. Both have cf. It is not the same for them they have diffrent issues with it.
Both of them having it makes it normal to them. So I get less problems with them not wanting to do their treatments and meds. They seem to think it's odd that other people don't do the stuff they do.
They can pass germs but if you use precautions it's shouldn't be that much more of a problem then germs from any other person. I have found that my kids don't get sick at the same time. They also don't culture the same things when they do culture.
Bright bowel showed in both of my sons ultrasounds. I lucked out and it didn't cause issue at birth. I know that some other things can do that as well. Google bright bowel and see what it tells you.
Fear won't do any good. Having kids is full of what if's. Even if the kids are heathy.

Mom of 2w/cf
 
2

2sickkids

Guest
I found out I was having another baby right before my sons 1st b-day. Both have cf. It is not the same for them they have diffrent issues with it.
Both of them having it makes it normal to them. So I get less problems with them not wanting to do their treatments and meds. They seem to think it's odd that other people don't do the stuff they do.
They can pass germs but if you use precautions it's shouldn't be that much more of a problem then germs from any other person. I have found that my kids don't get sick at the same time. They also don't culture the same things when they do culture.
Bright bowel showed in both of my sons ultrasounds. I lucked out and it didn't cause issue at birth. I know that some other things can do that as well. Google bright bowel and see what it tells you.
Fear won't do any good. Having kids is full of what if's. Even if the kids are heathy.

Mom of 2w/cf
 
2

2sickkids

Guest
I found out I was having another baby right before my sons 1st b-day. Both have cf. It is not the same for them they have diffrent issues with it.
Both of them having it makes it normal to them. So I get less problems with them not wanting to do their treatments and meds. They seem to think it's odd that other people don't do the stuff they do.
They can pass germs but if you use precautions it's shouldn't be that much more of a problem then germs from any other person. I have found that my kids don't get sick at the same time. They also don't culture the same things when they do culture.
Bright bowel showed in both of my sons ultrasounds. I lucked out and it didn't cause issue at birth. I know that some other things can do that as well. Google bright bowel and see what it tells you.
Fear won't do any good. Having kids is full of what if's. Even if the kids are heathy.

Mom of 2w/cf
 
2

2sickkids

Guest
I found out I was having another baby right before my sons 1st b-day. Both have cf. It is not the same for them they have diffrent issues with it.
<br /> Both of them having it makes it normal to them. So I get less problems with them not wanting to do their treatments and meds. They seem to think it's odd that other people don't do the stuff they do.
<br /> They can pass germs but if you use precautions it's shouldn't be that much more of a problem then germs from any other person. I have found that my kids don't get sick at the same time. They also don't culture the same things when they do culture.
<br /> Bright bowel showed in both of my sons ultrasounds. I lucked out and it didn't cause issue at birth. I know that some other things can do that as well. Google bright bowel and see what it tells you.
<br /> Fear won't do any good. Having kids is full of what if's. Even if the kids are heathy.
<br />
<br />Mom of 2w/cf
 
S

Sheridan

New member
I have 2 boys with CF one is 8 years old and the other is 7 months old. I agree with the above post about her friend, it is what it is I dont know any different. To me it is a lot easier having 2 with CF than 1 each way, I wont have to explain why one can have chocolate while the other can't etc etc.

My 2nd had bright bowel and in Australia we also have a heel prick test at 5 days old to test for CF. At the moment my baby is 7 days into a 14 day tune up for psydomonis (sp?), we had our eldest tested for it too right about confirmation and he does not have it - big relief. So I guess whilst there is a risk of cross infection it does not mean that it will happen.

Good luck with it all
 
S

Sheridan

New member
I have 2 boys with CF one is 8 years old and the other is 7 months old. I agree with the above post about her friend, it is what it is I dont know any different. To me it is a lot easier having 2 with CF than 1 each way, I wont have to explain why one can have chocolate while the other can't etc etc.

My 2nd had bright bowel and in Australia we also have a heel prick test at 5 days old to test for CF. At the moment my baby is 7 days into a 14 day tune up for psydomonis (sp?), we had our eldest tested for it too right about confirmation and he does not have it - big relief. So I guess whilst there is a risk of cross infection it does not mean that it will happen.

Good luck with it all
 
S

Sheridan

New member
I have 2 boys with CF one is 8 years old and the other is 7 months old. I agree with the above post about her friend, it is what it is I dont know any different. To me it is a lot easier having 2 with CF than 1 each way, I wont have to explain why one can have chocolate while the other can't etc etc.

My 2nd had bright bowel and in Australia we also have a heel prick test at 5 days old to test for CF. At the moment my baby is 7 days into a 14 day tune up for psydomonis (sp?), we had our eldest tested for it too right about confirmation and he does not have it - big relief. So I guess whilst there is a risk of cross infection it does not mean that it will happen.

Good luck with it all
 
S

Sheridan

New member
I have 2 boys with CF one is 8 years old and the other is 7 months old. I agree with the above post about her friend, it is what it is I dont know any different. To me it is a lot easier having 2 with CF than 1 each way, I wont have to explain why one can have chocolate while the other can't etc etc.

My 2nd had bright bowel and in Australia we also have a heel prick test at 5 days old to test for CF. At the moment my baby is 7 days into a 14 day tune up for psydomonis (sp?), we had our eldest tested for it too right about confirmation and he does not have it - big relief. So I guess whilst there is a risk of cross infection it does not mean that it will happen.

Good luck with it all
 
S

Sheridan

New member
I have 2 boys with CF one is 8 years old and the other is 7 months old. I agree with the above post about her friend, it is what it is I dont know any different. To me it is a lot easier having 2 with CF than 1 each way, I wont have to explain why one can have chocolate while the other can't etc etc.
<br />
<br />My 2nd had bright bowel and in Australia we also have a heel prick test at 5 days old to test for CF. At the moment my baby is 7 days into a 14 day tune up for psydomonis (sp?), we had our eldest tested for it too right about confirmation and he does not have it - big relief. So I guess whilst there is a risk of cross infection it does not mean that it will happen.
<br />
<br />Good luck with it all
 
Z

zoeg

New member
Thanks everyone for your kind replies. I'm feeling a little better today. If I start dwelling too much, I get teary, but overall it is getting better. We have been so fortuante to go to St. Louis Childrens so far, that I feel as though Kate gets wonderful help and support there- and they've really kept her quite healthy! I'm hoping the second (if she has it) will be the same. I also have a little hope since Kate and the new baby will both have nonsense mutations. I'm becoming obsessed with reading about that PTC124 and that is my saving grace when it comes to thinking of the future. Kate's dr. says the research is promising and I keep clinging to that hope as well and that this drug makes it to the market soon. I enjoy reading your sibling stories, so if anyone else has one please share. They really do make me feel not so alone and encouraged.

Thanks,
Zoe mom to Kate 2wcf
 
Z

zoeg

New member
Thanks everyone for your kind replies. I'm feeling a little better today. If I start dwelling too much, I get teary, but overall it is getting better. We have been so fortuante to go to St. Louis Childrens so far, that I feel as though Kate gets wonderful help and support there- and they've really kept her quite healthy! I'm hoping the second (if she has it) will be the same. I also have a little hope since Kate and the new baby will both have nonsense mutations. I'm becoming obsessed with reading about that PTC124 and that is my saving grace when it comes to thinking of the future. Kate's dr. says the research is promising and I keep clinging to that hope as well and that this drug makes it to the market soon. I enjoy reading your sibling stories, so if anyone else has one please share. They really do make me feel not so alone and encouraged.

Thanks,
Zoe mom to Kate 2wcf
 
Z

zoeg

New member
Thanks everyone for your kind replies. I'm feeling a little better today. If I start dwelling too much, I get teary, but overall it is getting better. We have been so fortuante to go to St. Louis Childrens so far, that I feel as though Kate gets wonderful help and support there- and they've really kept her quite healthy! I'm hoping the second (if she has it) will be the same. I also have a little hope since Kate and the new baby will both have nonsense mutations. I'm becoming obsessed with reading about that PTC124 and that is my saving grace when it comes to thinking of the future. Kate's dr. says the research is promising and I keep clinging to that hope as well and that this drug makes it to the market soon. I enjoy reading your sibling stories, so if anyone else has one please share. They really do make me feel not so alone and encouraged.

Thanks,
Zoe mom to Kate 2wcf
 
Z

zoeg

New member
Thanks everyone for your kind replies. I'm feeling a little better today. If I start dwelling too much, I get teary, but overall it is getting better. We have been so fortuante to go to St. Louis Childrens so far, that I feel as though Kate gets wonderful help and support there- and they've really kept her quite healthy! I'm hoping the second (if she has it) will be the same. I also have a little hope since Kate and the new baby will both have nonsense mutations. I'm becoming obsessed with reading about that PTC124 and that is my saving grace when it comes to thinking of the future. Kate's dr. says the research is promising and I keep clinging to that hope as well and that this drug makes it to the market soon. I enjoy reading your sibling stories, so if anyone else has one please share. They really do make me feel not so alone and encouraged.

Thanks,
Zoe mom to Kate 2wcf
 
Z

zoeg

New member
Thanks everyone for your kind replies. I'm feeling a little better today. If I start dwelling too much, I get teary, but overall it is getting better. We have been so fortuante to go to St. Louis Childrens so far, that I feel as though Kate gets wonderful help and support there- and they've really kept her quite healthy! I'm hoping the second (if she has it) will be the same. I also have a little hope since Kate and the new baby will both have nonsense mutations. I'm becoming obsessed with reading about that PTC124 and that is my saving grace when it comes to thinking of the future. Kate's dr. says the research is promising and I keep clinging to that hope as well and that this drug makes it to the market soon. I enjoy reading your sibling stories, so if anyone else has one please share. They really do make me feel not so alone and encouraged.
<br />
<br />Thanks,
<br />Zoe mom to Kate 2wcf
 
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