new to this forum---many questions

Kenziesmom · Jul 18, 2008

I am new and have never talked to anyone with a child with CF. My daughter is 13 and has cf. She is pretty healthy. Hospitalized once for CF when she was 1 1/2 years old (diagnosis), when she was 8 for an appendectomy. she has done home IV antibiotics about 5 times. She does have resistant Pseudomonas aeruginosa but we had the synergy tests done and did find antibiotic cocktails that work. We did get her a port because she had a hard time getting picc lines.

I guess my questions are: does anyone here have someone around the same age.

Do any of you get anxiety for no reason at all even when every body is happy and healthy?

lately I have been having a hard time and I feel alone.....

My daughter acts as though she doesn't have cf (which I don't know if that is a good or bad thing) she does her treatments, takes her meds, but doesn't like to talk about it, doesn't tell any of her friends that she has cf. When I ask her if she is embarrassed she says it's just nobody's business. She doesn't go on any websites or read any books to learn about cf. Everything she knows is from what we tell her or her doctor.

Is any of this familiar to anyone? I worry about her....

Kenziesmom · Jul 18, 2008

I am new and have never talked to anyone with a child with CF. My daughter is 13 and has cf. She is pretty healthy. Hospitalized once for CF when she was 1 1/2 years old (diagnosis), when she was 8 for an appendectomy. she has done home IV antibiotics about 5 times. She does have resistant Pseudomonas aeruginosa but we had the synergy tests done and did find antibiotic cocktails that work. We did get her a port because she had a hard time getting picc lines.

I guess my questions are: does anyone here have someone around the same age.

Do any of you get anxiety for no reason at all even when every body is happy and healthy?

lately I have been having a hard time and I feel alone.....

My daughter acts as though she doesn't have cf (which I don't know if that is a good or bad thing) she does her treatments, takes her meds, but doesn't like to talk about it, doesn't tell any of her friends that she has cf. When I ask her if she is embarrassed she says it's just nobody's business. She doesn't go on any websites or read any books to learn about cf. Everything she knows is from what we tell her or her doctor.

Is any of this familiar to anyone? I worry about her....

Kenziesmom · Jul 18, 2008

I am new and have never talked to anyone with a child with CF. My daughter is 13 and has cf. She is pretty healthy. Hospitalized once for CF when she was 1 1/2 years old (diagnosis), when she was 8 for an appendectomy. she has done home IV antibiotics about 5 times. She does have resistant Pseudomonas aeruginosa but we had the synergy tests done and did find antibiotic cocktails that work. We did get her a port because she had a hard time getting picc lines.

I guess my questions are: does anyone here have someone around the same age.

Do any of you get anxiety for no reason at all even when every body is happy and healthy?

lately I have been having a hard time and I feel alone.....

My daughter acts as though she doesn't have cf (which I don't know if that is a good or bad thing) she does her treatments, takes her meds, but doesn't like to talk about it, doesn't tell any of her friends that she has cf. When I ask her if she is embarrassed she says it's just nobody's business. She doesn't go on any websites or read any books to learn about cf. Everything she knows is from what we tell her or her doctor.

Is any of this familiar to anyone? I worry about her....

Kenziesmom · Jul 18, 2008

I am new and have never talked to anyone with a child with CF. My daughter is 13 and has cf. She is pretty healthy. Hospitalized once for CF when she was 1 1/2 years old (diagnosis), when she was 8 for an appendectomy. she has done home IV antibiotics about 5 times. She does have resistant Pseudomonas aeruginosa but we had the synergy tests done and did find antibiotic cocktails that work. We did get her a port because she had a hard time getting picc lines.

I guess my questions are: does anyone here have someone around the same age.

Do any of you get anxiety for no reason at all even when every body is happy and healthy?

lately I have been having a hard time and I feel alone.....

My daughter acts as though she doesn't have cf (which I don't know if that is a good or bad thing) she does her treatments, takes her meds, but doesn't like to talk about it, doesn't tell any of her friends that she has cf. When I ask her if she is embarrassed she says it's just nobody's business. She doesn't go on any websites or read any books to learn about cf. Everything she knows is from what we tell her or her doctor.

Is any of this familiar to anyone? I worry about her....

Kenziesmom · Jul 18, 2008

I am new and have never talked to anyone with a child with CF. My daughter is 13 and has cf. She is pretty healthy. Hospitalized once for CF when she was 1 1/2 years old (diagnosis), when she was 8 for an appendectomy. she has done home IV antibiotics about 5 times. She does have resistant Pseudomonas aeruginosa but we had the synergy tests done and did find antibiotic cocktails that work. We did get her a port because she had a hard time getting picc lines.
 
 I guess my questions are: does anyone here have someone around the same age.
 
 Do any of you get anxiety for no reason at all even when every body is happy and healthy?
 
 lately I have been having a hard time and I feel alone.....
 
 My daughter acts as though she doesn't have cf (which I don't know if that is a good or bad thing) she does her treatments, takes her meds, but doesn't like to talk about it, doesn't tell any of her friends that she has cf. When I ask her if she is embarrassed she says it's just nobody's business. She doesn't go on any websites or read any books to learn about cf. Everything she knows is from what we tell her or her doctor.
 
 Is any of this familiar to anyone? I worry about her....

Cherylwithone · Jul 18, 2008

First off, Welcome to the site. I have a teenage daughter who is 15. When she was your daughters age only the school new and her best friend. Other then that the other kids never new why she missed so much school. Last year during her freshman year she decided it was time. Her graduating class was told that she has cf. Infact someone from the foundation came out and gave a talk on it and Malora (my daughter) talked openly with her class. Mind you we are talking over 200 kids. The out come was they got together and did the Great Stride walk. They know when she has a PICC line what it is for. Malora also never got on any sites or talked about having CF. Now she does. You might have to wait for your daughter to be ready to talk and share the information. It's hard as a mom but sometimes you just have to wait. Your not alone in this. I bet every mom has gone thru what your feeling. It's normal.

Just hang in there.

Cheryl mom to Malora 15 w/cf

Cherylwithone · Jul 18, 2008

First off, Welcome to the site. I have a teenage daughter who is 15. When she was your daughters age only the school new and her best friend. Other then that the other kids never new why she missed so much school. Last year during her freshman year she decided it was time. Her graduating class was told that she has cf. Infact someone from the foundation came out and gave a talk on it and Malora (my daughter) talked openly with her class. Mind you we are talking over 200 kids. The out come was they got together and did the Great Stride walk. They know when she has a PICC line what it is for. Malora also never got on any sites or talked about having CF. Now she does. You might have to wait for your daughter to be ready to talk and share the information. It's hard as a mom but sometimes you just have to wait. Your not alone in this. I bet every mom has gone thru what your feeling. It's normal.

Just hang in there.

Cheryl mom to Malora 15 w/cf

Cherylwithone · Jul 18, 2008

First off, Welcome to the site. I have a teenage daughter who is 15. When she was your daughters age only the school new and her best friend. Other then that the other kids never new why she missed so much school. Last year during her freshman year she decided it was time. Her graduating class was told that she has cf. Infact someone from the foundation came out and gave a talk on it and Malora (my daughter) talked openly with her class. Mind you we are talking over 200 kids. The out come was they got together and did the Great Stride walk. They know when she has a PICC line what it is for. Malora also never got on any sites or talked about having CF. Now she does. You might have to wait for your daughter to be ready to talk and share the information. It's hard as a mom but sometimes you just have to wait. Your not alone in this. I bet every mom has gone thru what your feeling. It's normal.

Just hang in there.

Cheryl mom to Malora 15 w/cf

Cherylwithone · Jul 18, 2008

First off, Welcome to the site. I have a teenage daughter who is 15. When she was your daughters age only the school new and her best friend. Other then that the other kids never new why she missed so much school. Last year during her freshman year she decided it was time. Her graduating class was told that she has cf. Infact someone from the foundation came out and gave a talk on it and Malora (my daughter) talked openly with her class. Mind you we are talking over 200 kids. The out come was they got together and did the Great Stride walk. They know when she has a PICC line what it is for. Malora also never got on any sites or talked about having CF. Now she does. You might have to wait for your daughter to be ready to talk and share the information. It's hard as a mom but sometimes you just have to wait. Your not alone in this. I bet every mom has gone thru what your feeling. It's normal.

Just hang in there.

Cheryl mom to Malora 15 w/cf

Cherylwithone · Jul 18, 2008

First off, Welcome to the site. I have a teenage daughter who is 15. When she was your daughters age only the school new and her best friend. Other then that the other kids never new why she missed so much school. Last year during her freshman year she decided it was time. Her graduating class was told that she has cf. Infact someone from the foundation came out and gave a talk on it and Malora (my daughter) talked openly with her class. Mind you we are talking over 200 kids. The out come was they got together and did the Great Stride walk. They know when she has a PICC line what it is for. Malora also never got on any sites or talked about having CF. Now she does. You might have to wait for your daughter to be ready to talk and share the information. It's hard as a mom but sometimes you just have to wait. Your not alone in this. I bet every mom has gone thru what your feeling. It's normal.
 
 Just hang in there.
 
 Cheryl mom to Malora 15 w/cf

Kenziesmom · Jul 18, 2008

Thanks for your reply, I never realized how nice it would be to hear from someone who could totally understand what I was going through. What releif that I am not alone. I should have found this forum years ago. I got my daughter to join a month ago but she has not been on since. I'm glad to know that she is not alone either. Thank you again........<img src="i/expressions/heart.gif" border="0">

Kenziesmom · Jul 18, 2008

Thanks for your reply, I never realized how nice it would be to hear from someone who could totally understand what I was going through. What releif that I am not alone. I should have found this forum years ago. I got my daughter to join a month ago but she has not been on since. I'm glad to know that she is not alone either. Thank you again........<img src="i/expressions/heart.gif" border="0">

Kenziesmom · Jul 18, 2008

Thanks for your reply, I never realized how nice it would be to hear from someone who could totally understand what I was going through. What releif that I am not alone. I should have found this forum years ago. I got my daughter to join a month ago but she has not been on since. I'm glad to know that she is not alone either. Thank you again........<img src="i/expressions/heart.gif" border="0">

Kenziesmom · Jul 18, 2008

Thanks for your reply, I never realized how nice it would be to hear from someone who could totally understand what I was going through. What releif that I am not alone. I should have found this forum years ago. I got my daughter to join a month ago but she has not been on since. I'm glad to know that she is not alone either. Thank you again........<img src="i/expressions/heart.gif" border="0">

Kenziesmom · Jul 18, 2008

Thanks for your reply, I never realized how nice it would be to hear from someone who could totally understand what I was going through. What releif that I am not alone. I should have found this forum years ago. I got my daughter to join a month ago but she has not been on since. I'm glad to know that she is not alone either. Thank you again........<img src="i/expressions/heart.gif" border="0">

ReneeP · Jul 18, 2008

Hello & Welcome!

I can't even tell you how familiar that sounds to me... My 13 year old daughter, Kaitlyn sounds just like your daughter. She doesn't want to tell anyone that she has CF either. Her reasoning is that she doesn't want anyone to feel sorry for her and/or treat her differently. I do talk to the nurses and teachers but I try to respect her wishes as far as telling anyone else.

I have two girls with CF so my situation is a little bit different, but not much. I most definately have times when I feel alone and scared even though things are going well. It's the fear of the unknown. Like when I hear one of them cough more than usual... or get a stuffy nose... it's like a reality check. I start to freak out hoping they aren't getting sick.

Kaitlyn doesn't make any effort to learn anything about CF either. And when we go to the dr she plays dumb... they ask her questions and she looks at me... I have recently just refused to answer. I know she knows the answers. We have worked very hard to make the girls be responsible for their own health as much as possible. They do everything themselves as far as treatments go.

As far as health goes, Kaitlyn is pretty healthy as well. She was diagnosed at 3 years old and was hospitalized then. From that point on she wasn't sick at all for 9 years. Then when she turned 12 she got really sick and was hospitalized for a while. Since then she's been on IV antibiotics 4 times (in 1 1/2 years). But CF doesn't hold her back from anything. She's very active.

Feel free to e-mail me if you want to talk more. I would be happy to talk to you...and maybe the girls could e-mail each other or something. I think that would be nice for them.

I'm glad you found this forum... you will get some really good info here!

lindareneepreston@hotmail.com

ReneeP · Jul 18, 2008

Hello & Welcome!

I can't even tell you how familiar that sounds to me... My 13 year old daughter, Kaitlyn sounds just like your daughter. She doesn't want to tell anyone that she has CF either. Her reasoning is that she doesn't want anyone to feel sorry for her and/or treat her differently. I do talk to the nurses and teachers but I try to respect her wishes as far as telling anyone else.

I have two girls with CF so my situation is a little bit different, but not much. I most definately have times when I feel alone and scared even though things are going well. It's the fear of the unknown. Like when I hear one of them cough more than usual... or get a stuffy nose... it's like a reality check. I start to freak out hoping they aren't getting sick.

Kaitlyn doesn't make any effort to learn anything about CF either. And when we go to the dr she plays dumb... they ask her questions and she looks at me... I have recently just refused to answer. I know she knows the answers. We have worked very hard to make the girls be responsible for their own health as much as possible. They do everything themselves as far as treatments go.

As far as health goes, Kaitlyn is pretty healthy as well. She was diagnosed at 3 years old and was hospitalized then. From that point on she wasn't sick at all for 9 years. Then when she turned 12 she got really sick and was hospitalized for a while. Since then she's been on IV antibiotics 4 times (in 1 1/2 years). But CF doesn't hold her back from anything. She's very active.

Feel free to e-mail me if you want to talk more. I would be happy to talk to you...and maybe the girls could e-mail each other or something. I think that would be nice for them.

I'm glad you found this forum... you will get some really good info here!

lindareneepreston@hotmail.com

ReneeP · Jul 18, 2008

Hello & Welcome!

I can't even tell you how familiar that sounds to me... My 13 year old daughter, Kaitlyn sounds just like your daughter. She doesn't want to tell anyone that she has CF either. Her reasoning is that she doesn't want anyone to feel sorry for her and/or treat her differently. I do talk to the nurses and teachers but I try to respect her wishes as far as telling anyone else.

I have two girls with CF so my situation is a little bit different, but not much. I most definately have times when I feel alone and scared even though things are going well. It's the fear of the unknown. Like when I hear one of them cough more than usual... or get a stuffy nose... it's like a reality check. I start to freak out hoping they aren't getting sick.

Kaitlyn doesn't make any effort to learn anything about CF either. And when we go to the dr she plays dumb... they ask her questions and she looks at me... I have recently just refused to answer. I know she knows the answers. We have worked very hard to make the girls be responsible for their own health as much as possible. They do everything themselves as far as treatments go.

As far as health goes, Kaitlyn is pretty healthy as well. She was diagnosed at 3 years old and was hospitalized then. From that point on she wasn't sick at all for 9 years. Then when she turned 12 she got really sick and was hospitalized for a while. Since then she's been on IV antibiotics 4 times (in 1 1/2 years). But CF doesn't hold her back from anything. She's very active.

Feel free to e-mail me if you want to talk more. I would be happy to talk to you...and maybe the girls could e-mail each other or something. I think that would be nice for them.

I'm glad you found this forum... you will get some really good info here!

lindareneepreston@hotmail.com

ReneeP · Jul 18, 2008

Hello & Welcome!

I can't even tell you how familiar that sounds to me... My 13 year old daughter, Kaitlyn sounds just like your daughter. She doesn't want to tell anyone that she has CF either. Her reasoning is that she doesn't want anyone to feel sorry for her and/or treat her differently. I do talk to the nurses and teachers but I try to respect her wishes as far as telling anyone else.

I have two girls with CF so my situation is a little bit different, but not much. I most definately have times when I feel alone and scared even though things are going well. It's the fear of the unknown. Like when I hear one of them cough more than usual... or get a stuffy nose... it's like a reality check. I start to freak out hoping they aren't getting sick.

Kaitlyn doesn't make any effort to learn anything about CF either. And when we go to the dr she plays dumb... they ask her questions and she looks at me... I have recently just refused to answer. I know she knows the answers. We have worked very hard to make the girls be responsible for their own health as much as possible. They do everything themselves as far as treatments go.

As far as health goes, Kaitlyn is pretty healthy as well. She was diagnosed at 3 years old and was hospitalized then. From that point on she wasn't sick at all for 9 years. Then when she turned 12 she got really sick and was hospitalized for a while. Since then she's been on IV antibiotics 4 times (in 1 1/2 years). But CF doesn't hold her back from anything. She's very active.

Feel free to e-mail me if you want to talk more. I would be happy to talk to you...and maybe the girls could e-mail each other or something. I think that would be nice for them.

I'm glad you found this forum... you will get some really good info here!

lindareneepreston@hotmail.com

ReneeP · Jul 18, 2008

Hello & Welcome!
 
 I can't even tell you how familiar that sounds to me... My 13 year old daughter, Kaitlyn sounds just like your daughter. She doesn't want to tell anyone that she has CF either. Her reasoning is that she doesn't want anyone to feel sorry for her and/or treat her differently. I do talk to the nurses and teachers but I try to respect her wishes as far as telling anyone else.
 
 I have two girls with CF so my situation is a little bit different, but not much. I most definately have times when I feel alone and scared even though things are going well. It's the fear of the unknown. Like when I hear one of them cough more than usual... or get a stuffy nose... it's like a reality check. I start to freak out hoping they aren't getting sick.
 
 Kaitlyn doesn't make any effort to learn anything about CF either. And when we go to the dr she plays dumb... they ask her questions and she looks at me... I have recently just refused to answer. I know she knows the answers. We have worked very hard to make the girls be responsible for their own health as much as possible. They do everything themselves as far as treatments go.
 
 As far as health goes, Kaitlyn is pretty healthy as well. She was diagnosed at 3 years old and was hospitalized then. From that point on she wasn't sick at all for 9 years. Then when she turned 12 she got really sick and was hospitalized for a while. Since then she's been on IV antibiotics 4 times (in 1 1/2 years). But CF doesn't hold her back from anything. She's very active.
 
 Feel free to e-mail me if you want to talk more. I would be happy to talk to you...and maybe the girls could e-mail each other or something. I think that would be nice for them.
 
 I'm glad you found this forum... you will get some really good info here!
 
 lindareneepreston@hotmail.com

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