New To This Site have 8 yr girl w/ CF and healthy have ?'s

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redneckmom

New member
My daughter Linsi has been very healthy besides 1 yr. with a g-tube, pic line for antibotics once. Other then that 1 bought with inflamed pancrease and apendix. I have read til my eyes cross and I can't see how she can be as healthy besides being tall and skinny and have C.F. She was diagnoised at 3 months and I've always been on top of her health. I've had another child that doesn't carry the gene so I'm just confused with everything now a days. I don't know what to exspect besides what I read. I want knowledge from other parents with C.F. and young adults to help understand and help her with her needs. I haven't told her that it is terminal and I don't know when or how to tell her so she can understand and not scare or freak her out. If anyone out there can help me with some of my issues in order to be the best parent I can be for her. Thanks

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Shantina Ansley mom of an 8 yr. old daughter with C.F.
 
R

redneckmom

New member
My daughter Linsi has been very healthy besides 1 yr. with a g-tube, pic line for antibotics once. Other then that 1 bought with inflamed pancrease and apendix. I have read til my eyes cross and I can't see how she can be as healthy besides being tall and skinny and have C.F. She was diagnoised at 3 months and I've always been on top of her health. I've had another child that doesn't carry the gene so I'm just confused with everything now a days. I don't know what to exspect besides what I read. I want knowledge from other parents with C.F. and young adults to help understand and help her with her needs. I haven't told her that it is terminal and I don't know when or how to tell her so she can understand and not scare or freak her out. If anyone out there can help me with some of my issues in order to be the best parent I can be for her. Thanks

-------------------------
Shantina Ansley mom of an 8 yr. old daughter with C.F.
 
R

redneckmom

New member
My daughter Linsi has been very healthy besides 1 yr. with a g-tube, pic line for antibotics once. Other then that 1 bought with inflamed pancrease and apendix. I have read til my eyes cross and I can't see how she can be as healthy besides being tall and skinny and have C.F. She was diagnoised at 3 months and I've always been on top of her health. I've had another child that doesn't carry the gene so I'm just confused with everything now a days. I don't know what to exspect besides what I read. I want knowledge from other parents with C.F. and young adults to help understand and help her with her needs. I haven't told her that it is terminal and I don't know when or how to tell her so she can understand and not scare or freak her out. If anyone out there can help me with some of my issues in order to be the best parent I can be for her. Thanks

-------------------------
Shantina Ansley mom of an 8 yr. old daughter with C.F.
 
L

lflatford

New member
Lori,
That is great that your son is 9 and has no lung or respiratory issues yet. My daughter is three and hasn't had any either. Does your son do the vest daily? Does he do breathing treatments like Albuterol, pulmozyme and hypertonic saline daily? Our daughter does all of them, some twice per day. My husband and I were wondering if they are necessary since she doesn't have respiratory issues yet. There are some CFers that don't have respiratory issues at all even as adults. We pray this is the case with our daughter. I wonder what the precentage is for CFers who only have digestive issues? We are going to the CF clinic next week and we plan to ask our doctor about this. I know he will probably tell us to keep doing all the treatments but sometimes I just wonder. Our daughter is double deltaF708 and we have heard of many people with this mutation who just have digestive issues. What mutations does your son carry? Feel free to make any comments.

Lynsey-
Mom to Avery 3yrs. w/CF and Rhett 2yrs. CF carrier
 
L

lflatford

New member
Lori,
That is great that your son is 9 and has no lung or respiratory issues yet. My daughter is three and hasn't had any either. Does your son do the vest daily? Does he do breathing treatments like Albuterol, pulmozyme and hypertonic saline daily? Our daughter does all of them, some twice per day. My husband and I were wondering if they are necessary since she doesn't have respiratory issues yet. There are some CFers that don't have respiratory issues at all even as adults. We pray this is the case with our daughter. I wonder what the precentage is for CFers who only have digestive issues? We are going to the CF clinic next week and we plan to ask our doctor about this. I know he will probably tell us to keep doing all the treatments but sometimes I just wonder. Our daughter is double deltaF708 and we have heard of many people with this mutation who just have digestive issues. What mutations does your son carry? Feel free to make any comments.

Lynsey-
Mom to Avery 3yrs. w/CF and Rhett 2yrs. CF carrier
 
L

lflatford

New member
Lori,
That is great that your son is 9 and has no lung or respiratory issues yet. My daughter is three and hasn't had any either. Does your son do the vest daily? Does he do breathing treatments like Albuterol, pulmozyme and hypertonic saline daily? Our daughter does all of them, some twice per day. My husband and I were wondering if they are necessary since she doesn't have respiratory issues yet. There are some CFers that don't have respiratory issues at all even as adults. We pray this is the case with our daughter. I wonder what the precentage is for CFers who only have digestive issues? We are going to the CF clinic next week and we plan to ask our doctor about this. I know he will probably tell us to keep doing all the treatments but sometimes I just wonder. Our daughter is double deltaF708 and we have heard of many people with this mutation who just have digestive issues. What mutations does your son carry? Feel free to make any comments.

Lynsey-
Mom to Avery 3yrs. w/CF and Rhett 2yrs. CF carrier
 
D

djotroy17

New member
I would tell your children asap before he/she gets sick otherwise it will all crash down on them at 1nce. The way you tell them is up to you, your a mother, just tell them the truth and let them know u love him/her and ull always be there.

Lori: I have never heard of a CF patient without lung problems, I could be wrong but as far as I know CF effects mucus making it very thick and sticky, in time this can lead to lung problems to all patients by clogging up the lungs. Some CF patients seem to have much more severe problems then others- this I am not really sure why. At times I forget I even have CF, to be honest I was not keeping up with my pulmozoid and other meds the way I should of, I was acting like I didnt really need them until doing a research paper on CF a few days ago and discovering these forums...it made me realize how serious the disease can be, especially if you don't keep up with your meds.
 
D

djotroy17

New member
I would tell your children asap before he/she gets sick otherwise it will all crash down on them at 1nce. The way you tell them is up to you, your a mother, just tell them the truth and let them know u love him/her and ull always be there.

Lori: I have never heard of a CF patient without lung problems, I could be wrong but as far as I know CF effects mucus making it very thick and sticky, in time this can lead to lung problems to all patients by clogging up the lungs. Some CF patients seem to have much more severe problems then others- this I am not really sure why. At times I forget I even have CF, to be honest I was not keeping up with my pulmozoid and other meds the way I should of, I was acting like I didnt really need them until doing a research paper on CF a few days ago and discovering these forums...it made me realize how serious the disease can be, especially if you don't keep up with your meds.
 
D

djotroy17

New member
I would tell your children asap before he/she gets sick otherwise it will all crash down on them at 1nce. The way you tell them is up to you, your a mother, just tell them the truth and let them know u love him/her and ull always be there.

Lori: I have never heard of a CF patient without lung problems, I could be wrong but as far as I know CF effects mucus making it very thick and sticky, in time this can lead to lung problems to all patients by clogging up the lungs. Some CF patients seem to have much more severe problems then others- this I am not really sure why. At times I forget I even have CF, to be honest I was not keeping up with my pulmozoid and other meds the way I should of, I was acting like I didnt really need them until doing a research paper on CF a few days ago and discovering these forums...it made me realize how serious the disease can be, especially if you don't keep up with your meds.
 
C

ColinDShots

Guest
Hi, I'm 24 an have CF. My parents always told me that I had CF, I knew that I got sick more than other kids, and that the average life expendicy kept getting older. So I would say that I was in the know, about most of it.

I never had any lung issues untill I was 12 when I got the flu, and I lost 15% of my lung function. Untill then I was at about 110%. I never did any of the RT stuff, because it never brought anything up, and the Doctors were happy with my PFT's. I'm very active and that has worked the best for me. I played soccer, baseball, and moved onto cycling.

Colin
 
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ColinDShots

Guest
Hi, I'm 24 an have CF. My parents always told me that I had CF, I knew that I got sick more than other kids, and that the average life expendicy kept getting older. So I would say that I was in the know, about most of it.

I never had any lung issues untill I was 12 when I got the flu, and I lost 15% of my lung function. Untill then I was at about 110%. I never did any of the RT stuff, because it never brought anything up, and the Doctors were happy with my PFT's. I'm very active and that has worked the best for me. I played soccer, baseball, and moved onto cycling.

Colin
 
C

ColinDShots

Guest
Hi, I'm 24 an have CF. My parents always told me that I had CF, I knew that I got sick more than other kids, and that the average life expendicy kept getting older. So I would say that I was in the know, about most of it.

I never had any lung issues untill I was 12 when I got the flu, and I lost 15% of my lung function. Untill then I was at about 110%. I never did any of the RT stuff, because it never brought anything up, and the Doctors were happy with my PFT's. I'm very active and that has worked the best for me. I played soccer, baseball, and moved onto cycling.

Colin
 
C

ColinDShots

Guest
Hi, I'm 24 an have CF. My parents always told me that I had CF, I knew that I got sick more than other kids, and that the average life expendicy kept getting older. So I would say that I was in the know, about most of it.

I never had any lung issues untill I was 12 when I got the flu, and I lost 15% of my lung function. Untill then I was at about 110%. I never did any of the RT stuff, because it never brought anything up, and the Doctors were happy with my PFT's. I'm very active and that has worked the best for me. I played soccer, baseball, and moved onto cycling.

Colin
 
C

ColinDShots

Guest
Hi, I'm 24 an have CF. My parents always told me that I had CF, I knew that I got sick more than other kids, and that the average life expendicy kept getting older. So I would say that I was in the know, about most of it.

I never had any lung issues untill I was 12 when I got the flu, and I lost 15% of my lung function. Untill then I was at about 110%. I never did any of the RT stuff, because it never brought anything up, and the Doctors were happy with my PFT's. I'm very active and that has worked the best for me. I played soccer, baseball, and moved onto cycling.

Colin
 
C

ColinDShots

Guest
Hi, I'm 24 an have CF. My parents always told me that I had CF, I knew that I got sick more than other kids, and that the average life expendicy kept getting older. So I would say that I was in the know, about most of it.

I never had any lung issues untill I was 12 when I got the flu, and I lost 15% of my lung function. Untill then I was at about 110%. I never did any of the RT stuff, because it never brought anything up, and the Doctors were happy with my PFT's. I'm very active and that has worked the best for me. I played soccer, baseball, and moved onto cycling.

Colin
 
2

2perfectboys

Guest
Colllin,
that is great, I am a big fan of exerciese, can I ask u what your PFTs are currently and if u do any type of CPTs today
thanks
Lori
 
2

2perfectboys

Guest
Colllin,
that is great, I am a big fan of exerciese, can I ask u what your PFTs are currently and if u do any type of CPTs today
thanks
Lori
 
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