Just a few questions

L

Liza

New member
Checking on reflux is a good idea. Also, if she is coughing so much at night and she's not having an exacerbation, perhaps post nasal drainage could be an issue.

As for the missing school, every child is different. If she is having tummy issues then, yes, it'd be normal to miss school. When your tummy hurts you can't function in class. This was my youngest's main problem.

Have you taken your daughter to see a GI? They are best to figure out what is going on. Like our CF doc would tell us, he specializes in the lungs and although it's all related to CF, the GI doc is most informed in that area. They can do a fat test on her stools, check and make sure she's not got an obstruction or partial or even if it's just heading in that direction. When she actually goes to the bathroom, does it appear to you to be a "normal" looking constipated stool? Or is it "fluffy", airy looking, and mucusy, yellow or greasy, floating or sinking? They will ask you all these questions. I would ask to see a GI doc, either ask your CF doc or your primary care doc/pediatrician. If you go to a children's hospital for CF clinic, ask them if they recommend any of the GI docs there or call up the GI clinic and ask which of the docs see's CF patients. You want one that is familiar with CF.

It's always best to get it checked out if she's having so many problems. It just doesn't sound right to me that she need to take Miralax to have a BM and not have been checked out by a GI (gastroenterologist).

I hope something here helps.
 
L

Liza

New member
Checking on reflux is a good idea. Also, if she is coughing so much at night and she's not having an exacerbation, perhaps post nasal drainage could be an issue.

As for the missing school, every child is different. If she is having tummy issues then, yes, it'd be normal to miss school. When your tummy hurts you can't function in class. This was my youngest's main problem.

Have you taken your daughter to see a GI? They are best to figure out what is going on. Like our CF doc would tell us, he specializes in the lungs and although it's all related to CF, the GI doc is most informed in that area. They can do a fat test on her stools, check and make sure she's not got an obstruction or partial or even if it's just heading in that direction. When she actually goes to the bathroom, does it appear to you to be a "normal" looking constipated stool? Or is it "fluffy", airy looking, and mucusy, yellow or greasy, floating or sinking? They will ask you all these questions. I would ask to see a GI doc, either ask your CF doc or your primary care doc/pediatrician. If you go to a children's hospital for CF clinic, ask them if they recommend any of the GI docs there or call up the GI clinic and ask which of the docs see's CF patients. You want one that is familiar with CF.

It's always best to get it checked out if she's having so many problems. It just doesn't sound right to me that she need to take Miralax to have a BM and not have been checked out by a GI (gastroenterologist).

I hope something here helps.
 
L

Liza

New member
Checking on reflux is a good idea. Also, if she is coughing so much at night and she's not having an exacerbation, perhaps post nasal drainage could be an issue.

As for the missing school, every child is different. If she is having tummy issues then, yes, it'd be normal to miss school. When your tummy hurts you can't function in class. This was my youngest's main problem.

Have you taken your daughter to see a GI? They are best to figure out what is going on. Like our CF doc would tell us, he specializes in the lungs and although it's all related to CF, the GI doc is most informed in that area. They can do a fat test on her stools, check and make sure she's not got an obstruction or partial or even if it's just heading in that direction. When she actually goes to the bathroom, does it appear to you to be a "normal" looking constipated stool? Or is it "fluffy", airy looking, and mucusy, yellow or greasy, floating or sinking? They will ask you all these questions. I would ask to see a GI doc, either ask your CF doc or your primary care doc/pediatrician. If you go to a children's hospital for CF clinic, ask them if they recommend any of the GI docs there or call up the GI clinic and ask which of the docs see's CF patients. You want one that is familiar with CF.

It's always best to get it checked out if she's having so many problems. It just doesn't sound right to me that she need to take Miralax to have a BM and not have been checked out by a GI (gastroenterologist).

I hope something here helps.
 
L

Liza

New member
Checking on reflux is a good idea. Also, if she is coughing so much at night and she's not having an exacerbation, perhaps post nasal drainage could be an issue.

As for the missing school, every child is different. If she is having tummy issues then, yes, it'd be normal to miss school. When your tummy hurts you can't function in class. This was my youngest's main problem.

Have you taken your daughter to see a GI? They are best to figure out what is going on. Like our CF doc would tell us, he specializes in the lungs and although it's all related to CF, the GI doc is most informed in that area. They can do a fat test on her stools, check and make sure she's not got an obstruction or partial or even if it's just heading in that direction. When she actually goes to the bathroom, does it appear to you to be a "normal" looking constipated stool? Or is it "fluffy", airy looking, and mucusy, yellow or greasy, floating or sinking? They will ask you all these questions. I would ask to see a GI doc, either ask your CF doc or your primary care doc/pediatrician. If you go to a children's hospital for CF clinic, ask them if they recommend any of the GI docs there or call up the GI clinic and ask which of the docs see's CF patients. You want one that is familiar with CF.

It's always best to get it checked out if she's having so many problems. It just doesn't sound right to me that she need to take Miralax to have a BM and not have been checked out by a GI (gastroenterologist).

I hope something here helps.
 
L

Liza

New member
Checking on reflux is a good idea. Also, if she is coughing so much at night and she's not having an exacerbation, perhaps post nasal drainage could be an issue.
<br />
<br />As for the missing school, every child is different. If she is having tummy issues then, yes, it'd be normal to miss school. When your tummy hurts you can't function in class. This was my youngest's main problem.
<br />
<br />Have you taken your daughter to see a GI? They are best to figure out what is going on. Like our CF doc would tell us, he specializes in the lungs and although it's all related to CF, the GI doc is most informed in that area. They can do a fat test on her stools, check and make sure she's not got an obstruction or partial or even if it's just heading in that direction. When she actually goes to the bathroom, does it appear to you to be a "normal" looking constipated stool? Or is it "fluffy", airy looking, and mucusy, yellow or greasy, floating or sinking? They will ask you all these questions. I would ask to see a GI doc, either ask your CF doc or your primary care doc/pediatrician. If you go to a children's hospital for CF clinic, ask them if they recommend any of the GI docs there or call up the GI clinic and ask which of the docs see's CF patients. You want one that is familiar with CF.
<br />
<br />It's always best to get it checked out if she's having so many problems. It just doesn't sound right to me that she need to take Miralax to have a BM and not have been checked out by a GI (gastroenterologist).
<br />
<br />I hope something here helps.
<br />
<br />
 
G

ginandbrea

New member
Hi Katie,

My daughter too is pancreatic sufficient. I believe this is the reason for her late diagnosis at 9 y/o. She was always an average size baby and child until about 8 y/o when I noticed she wasn't gaining any weight. Breanna has never had any issues with constipation (occasional) and no issues with loose stools (unless on antibiotics occassional). Breanna will complain sometimes of tummy ache, but it may be from a combo of the vitamins and other supplements. I have a friend whose daughter is 10, no cf, but she has suffered from constipation since birth to the point now she is on a daily med.
Do you know the percentile Makailyn is in?

Oh, the Dr. sounds like she is not very understanding... I let Breanna stay home if she is tired, sometimes she is up coughing and needs to sleep in. When she was first diagnosed last year her lung function was 52% and probably had been for quite some time, she is now about 85%. My opinion is that lung function means a lot, yes, but if Makailyn is up coughing all night or just isn't feeling well and she is tired then it probably is a good idea to let her rest. I know I want Breanna to go go go, but she also needs to rest or else her body will be too tired to fight of anything bad.

I hope this helps!

Take care<img src="i/expressions/heart.gif" border="0">
Gina
 
G

ginandbrea

New member
Hi Katie,

My daughter too is pancreatic sufficient. I believe this is the reason for her late diagnosis at 9 y/o. She was always an average size baby and child until about 8 y/o when I noticed she wasn't gaining any weight. Breanna has never had any issues with constipation (occasional) and no issues with loose stools (unless on antibiotics occassional). Breanna will complain sometimes of tummy ache, but it may be from a combo of the vitamins and other supplements. I have a friend whose daughter is 10, no cf, but she has suffered from constipation since birth to the point now she is on a daily med.
Do you know the percentile Makailyn is in?

Oh, the Dr. sounds like she is not very understanding... I let Breanna stay home if she is tired, sometimes she is up coughing and needs to sleep in. When she was first diagnosed last year her lung function was 52% and probably had been for quite some time, she is now about 85%. My opinion is that lung function means a lot, yes, but if Makailyn is up coughing all night or just isn't feeling well and she is tired then it probably is a good idea to let her rest. I know I want Breanna to go go go, but she also needs to rest or else her body will be too tired to fight of anything bad.

I hope this helps!

Take care<img src="i/expressions/heart.gif" border="0">
Gina
 
G

ginandbrea

New member
Hi Katie,

My daughter too is pancreatic sufficient. I believe this is the reason for her late diagnosis at 9 y/o. She was always an average size baby and child until about 8 y/o when I noticed she wasn't gaining any weight. Breanna has never had any issues with constipation (occasional) and no issues with loose stools (unless on antibiotics occassional). Breanna will complain sometimes of tummy ache, but it may be from a combo of the vitamins and other supplements. I have a friend whose daughter is 10, no cf, but she has suffered from constipation since birth to the point now she is on a daily med.
Do you know the percentile Makailyn is in?

Oh, the Dr. sounds like she is not very understanding... I let Breanna stay home if she is tired, sometimes she is up coughing and needs to sleep in. When she was first diagnosed last year her lung function was 52% and probably had been for quite some time, she is now about 85%. My opinion is that lung function means a lot, yes, but if Makailyn is up coughing all night or just isn't feeling well and she is tired then it probably is a good idea to let her rest. I know I want Breanna to go go go, but she also needs to rest or else her body will be too tired to fight of anything bad.

I hope this helps!

Take care<img src="i/expressions/heart.gif" border="0">
Gina
 
G

ginandbrea

New member
Hi Katie,

My daughter too is pancreatic sufficient. I believe this is the reason for her late diagnosis at 9 y/o. She was always an average size baby and child until about 8 y/o when I noticed she wasn't gaining any weight. Breanna has never had any issues with constipation (occasional) and no issues with loose stools (unless on antibiotics occassional). Breanna will complain sometimes of tummy ache, but it may be from a combo of the vitamins and other supplements. I have a friend whose daughter is 10, no cf, but she has suffered from constipation since birth to the point now she is on a daily med.
Do you know the percentile Makailyn is in?

Oh, the Dr. sounds like she is not very understanding... I let Breanna stay home if she is tired, sometimes she is up coughing and needs to sleep in. When she was first diagnosed last year her lung function was 52% and probably had been for quite some time, she is now about 85%. My opinion is that lung function means a lot, yes, but if Makailyn is up coughing all night or just isn't feeling well and she is tired then it probably is a good idea to let her rest. I know I want Breanna to go go go, but she also needs to rest or else her body will be too tired to fight of anything bad.

I hope this helps!

Take care<img src="i/expressions/heart.gif" border="0">
Gina
 
G

ginandbrea

New member
Hi Katie,
<br />
<br />My daughter too is pancreatic sufficient. I believe this is the reason for her late diagnosis at 9 y/o. She was always an average size baby and child until about 8 y/o when I noticed she wasn't gaining any weight. Breanna has never had any issues with constipation (occasional) and no issues with loose stools (unless on antibiotics occassional). Breanna will complain sometimes of tummy ache, but it may be from a combo of the vitamins and other supplements. I have a friend whose daughter is 10, no cf, but she has suffered from constipation since birth to the point now she is on a daily med.
<br />Do you know the percentile Makailyn is in?
<br />
<br />Oh, the Dr. sounds like she is not very understanding... I let Breanna stay home if she is tired, sometimes she is up coughing and needs to sleep in. When she was first diagnosed last year her lung function was 52% and probably had been for quite some time, she is now about 85%. My opinion is that lung function means a lot, yes, but if Makailyn is up coughing all night or just isn't feeling well and she is tired then it probably is a good idea to let her rest. I know I want Breanna to go go go, but she also needs to rest or else her body will be too tired to fight of anything bad.
<br />
<br />I hope this helps!
<br />
<br />Take care<img src="i/expressions/heart.gif" border="0">
<br />Gina
<br />
 
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