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Book Recommendation
- Thread starter auntcob
- Start date
I don't know of any particular books to recommend. Maybe your local CFF chapter would have something, but I'd be careful of what you give them to read. Especially given your situation.
When Jordan was dx at 15, the literature/videos given to me were of no help, because that wasn't what my son had experienced. I was handed a bag full of stuff, that scared the living daylights out of me! They should never have given me the "cookie cutter" CF info like that.
When I found this site, I realized the many different faces of CF, and I began to understand Jordan's dx better. CF is so hard to explain to people, because just when you think you've got your child's CF down, it changes. Learning from the people here with CF has been more helpful to me than anything the clinic every gave me.
We have grandparents, aunts, uncles, cousins, etc. here. Anyone who loves someone with CF is welcome here, and in my opinion, this is a REAL learning source. Of course you always have to consult your child's doc before doing anything that others might be doing, but it gives you ideas to bring up at clinic visits that your doc may not have thought of.
Stacey
When Jordan was dx at 15, the literature/videos given to me were of no help, because that wasn't what my son had experienced. I was handed a bag full of stuff, that scared the living daylights out of me! They should never have given me the "cookie cutter" CF info like that.
When I found this site, I realized the many different faces of CF, and I began to understand Jordan's dx better. CF is so hard to explain to people, because just when you think you've got your child's CF down, it changes. Learning from the people here with CF has been more helpful to me than anything the clinic every gave me.
We have grandparents, aunts, uncles, cousins, etc. here. Anyone who loves someone with CF is welcome here, and in my opinion, this is a REAL learning source. Of course you always have to consult your child's doc before doing anything that others might be doing, but it gives you ideas to bring up at clinic visits that your doc may not have thought of.
Stacey
I don't know of any particular books to recommend. Maybe your local CFF chapter would have something, but I'd be careful of what you give them to read. Especially given your situation.
When Jordan was dx at 15, the literature/videos given to me were of no help, because that wasn't what my son had experienced. I was handed a bag full of stuff, that scared the living daylights out of me! They should never have given me the "cookie cutter" CF info like that.
When I found this site, I realized the many different faces of CF, and I began to understand Jordan's dx better. CF is so hard to explain to people, because just when you think you've got your child's CF down, it changes. Learning from the people here with CF has been more helpful to me than anything the clinic every gave me.
We have grandparents, aunts, uncles, cousins, etc. here. Anyone who loves someone with CF is welcome here, and in my opinion, this is a REAL learning source. Of course you always have to consult your child's doc before doing anything that others might be doing, but it gives you ideas to bring up at clinic visits that your doc may not have thought of.
Stacey
When Jordan was dx at 15, the literature/videos given to me were of no help, because that wasn't what my son had experienced. I was handed a bag full of stuff, that scared the living daylights out of me! They should never have given me the "cookie cutter" CF info like that.
When I found this site, I realized the many different faces of CF, and I began to understand Jordan's dx better. CF is so hard to explain to people, because just when you think you've got your child's CF down, it changes. Learning from the people here with CF has been more helpful to me than anything the clinic every gave me.
We have grandparents, aunts, uncles, cousins, etc. here. Anyone who loves someone with CF is welcome here, and in my opinion, this is a REAL learning source. Of course you always have to consult your child's doc before doing anything that others might be doing, but it gives you ideas to bring up at clinic visits that your doc may not have thought of.
Stacey
I don't know of any particular books to recommend. Maybe your local CFF chapter would have something, but I'd be careful of what you give them to read. Especially given your situation.
When Jordan was dx at 15, the literature/videos given to me were of no help, because that wasn't what my son had experienced. I was handed a bag full of stuff, that scared the living daylights out of me! They should never have given me the "cookie cutter" CF info like that.
When I found this site, I realized the many different faces of CF, and I began to understand Jordan's dx better. CF is so hard to explain to people, because just when you think you've got your child's CF down, it changes. Learning from the people here with CF has been more helpful to me than anything the clinic every gave me.
We have grandparents, aunts, uncles, cousins, etc. here. Anyone who loves someone with CF is welcome here, and in my opinion, this is a REAL learning source. Of course you always have to consult your child's doc before doing anything that others might be doing, but it gives you ideas to bring up at clinic visits that your doc may not have thought of.
Stacey
When Jordan was dx at 15, the literature/videos given to me were of no help, because that wasn't what my son had experienced. I was handed a bag full of stuff, that scared the living daylights out of me! They should never have given me the "cookie cutter" CF info like that.
When I found this site, I realized the many different faces of CF, and I began to understand Jordan's dx better. CF is so hard to explain to people, because just when you think you've got your child's CF down, it changes. Learning from the people here with CF has been more helpful to me than anything the clinic every gave me.
We have grandparents, aunts, uncles, cousins, etc. here. Anyone who loves someone with CF is welcome here, and in my opinion, this is a REAL learning source. Of course you always have to consult your child's doc before doing anything that others might be doing, but it gives you ideas to bring up at clinic visits that your doc may not have thought of.
Stacey
I don't know of any particular books to recommend. Maybe your local CFF chapter would have something, but I'd be careful of what you give them to read. Especially given your situation.
When Jordan was dx at 15, the literature/videos given to me were of no help, because that wasn't what my son had experienced. I was handed a bag full of stuff, that scared the living daylights out of me! They should never have given me the "cookie cutter" CF info like that.
When I found this site, I realized the many different faces of CF, and I began to understand Jordan's dx better. CF is so hard to explain to people, because just when you think you've got your child's CF down, it changes. Learning from the people here with CF has been more helpful to me than anything the clinic every gave me.
We have grandparents, aunts, uncles, cousins, etc. here. Anyone who loves someone with CF is welcome here, and in my opinion, this is a REAL learning source. Of course you always have to consult your child's doc before doing anything that others might be doing, but it gives you ideas to bring up at clinic visits that your doc may not have thought of.
Stacey
When Jordan was dx at 15, the literature/videos given to me were of no help, because that wasn't what my son had experienced. I was handed a bag full of stuff, that scared the living daylights out of me! They should never have given me the "cookie cutter" CF info like that.
When I found this site, I realized the many different faces of CF, and I began to understand Jordan's dx better. CF is so hard to explain to people, because just when you think you've got your child's CF down, it changes. Learning from the people here with CF has been more helpful to me than anything the clinic every gave me.
We have grandparents, aunts, uncles, cousins, etc. here. Anyone who loves someone with CF is welcome here, and in my opinion, this is a REAL learning source. Of course you always have to consult your child's doc before doing anything that others might be doing, but it gives you ideas to bring up at clinic visits that your doc may not have thought of.
Stacey
I don't know of any particular books to recommend. Maybe your local CFF chapter would have something, but I'd be careful of what you give them to read. Especially given your situation.
<br />
<br />When Jordan was dx at 15, the literature/videos given to me were of no help, because that wasn't what my son had experienced. I was handed a bag full of stuff, that scared the living daylights out of me! They should never have given me the "cookie cutter" CF info like that.
<br />
<br />When I found this site, I realized the many different faces of CF, and I began to understand Jordan's dx better. CF is so hard to explain to people, because just when you think you've got your child's CF down, it changes. Learning from the people here with CF has been more helpful to me than anything the clinic every gave me.
<br />
<br />We have grandparents, aunts, uncles, cousins, etc. here. Anyone who loves someone with CF is welcome here, and in my opinion, this is a REAL learning source. Of course you always have to consult your child's doc before doing anything that others might be doing, but it gives you ideas to bring up at clinic visits that your doc may not have thought of.
<br />
<br />Stacey
<br />
<br />When Jordan was dx at 15, the literature/videos given to me were of no help, because that wasn't what my son had experienced. I was handed a bag full of stuff, that scared the living daylights out of me! They should never have given me the "cookie cutter" CF info like that.
<br />
<br />When I found this site, I realized the many different faces of CF, and I began to understand Jordan's dx better. CF is so hard to explain to people, because just when you think you've got your child's CF down, it changes. Learning from the people here with CF has been more helpful to me than anything the clinic every gave me.
<br />
<br />We have grandparents, aunts, uncles, cousins, etc. here. Anyone who loves someone with CF is welcome here, and in my opinion, this is a REAL learning source. Of course you always have to consult your child's doc before doing anything that others might be doing, but it gives you ideas to bring up at clinic visits that your doc may not have thought of.
<br />
<br />Stacey
Stacy--You hit the nail on the head. Everything I can find is related to more classical presentations of CF. I don't think that is necessarily appropriate in this situation. And the unpredictability and individuality of CF makes it hard to say "this is cf and this is what to expect." maybe I'll get the motivation to write my own personal "book" that is related to Adam's situation for them!! Thanks.
BTW--I am going to but the Love and Logic book. Looks interesting and family studies one aspect of my professional field.
BTW--I am going to but the Love and Logic book. Looks interesting and family studies one aspect of my professional field.
Stacy--You hit the nail on the head. Everything I can find is related to more classical presentations of CF. I don't think that is necessarily appropriate in this situation. And the unpredictability and individuality of CF makes it hard to say "this is cf and this is what to expect." maybe I'll get the motivation to write my own personal "book" that is related to Adam's situation for them!! Thanks.
BTW--I am going to but the Love and Logic book. Looks interesting and family studies one aspect of my professional field.
BTW--I am going to but the Love and Logic book. Looks interesting and family studies one aspect of my professional field.
Stacy--You hit the nail on the head. Everything I can find is related to more classical presentations of CF. I don't think that is necessarily appropriate in this situation. And the unpredictability and individuality of CF makes it hard to say "this is cf and this is what to expect." maybe I'll get the motivation to write my own personal "book" that is related to Adam's situation for them!! Thanks.
BTW--I am going to but the Love and Logic book. Looks interesting and family studies one aspect of my professional field.
BTW--I am going to but the Love and Logic book. Looks interesting and family studies one aspect of my professional field.
Stacy--You hit the nail on the head. Everything I can find is related to more classical presentations of CF. I don't think that is necessarily appropriate in this situation. And the unpredictability and individuality of CF makes it hard to say "this is cf and this is what to expect." maybe I'll get the motivation to write my own personal "book" that is related to Adam's situation for them!! Thanks.
BTW--I am going to but the Love and Logic book. Looks interesting and family studies one aspect of my professional field.
BTW--I am going to but the Love and Logic book. Looks interesting and family studies one aspect of my professional field.
Stacy--You hit the nail on the head. Everything I can find is related to more classical presentations of CF. I don't think that is necessarily appropriate in this situation. And the unpredictability and individuality of CF makes it hard to say "this is cf and this is what to expect." maybe I'll get the motivation to write my own personal "book" that is related to Adam's situation for them!! Thanks.
<br />
<br />BTW--I am going to but the Love and Logic book. Looks interesting and family studies one aspect of my professional field.
<br />
<br />BTW--I am going to but the Love and Logic book. Looks interesting and family studies one aspect of my professional field.
3LilFightersmom
New member
When my youngest was dianosed the clinic xeroxed a copy of some sort of cf guide from the cf foundation...it was ok. I have found "cystic fibrosis, a guide for patient and family" by David M. Orenstein to be very helpful. It explains the basic genetic defect...talks about the various routes of diagnostics.... chapters that cover multiple issues that could be experienced with cf, covers some cf specific bacteria, drugs used to combat them...even the teenage years. I like it. Has a really helpful index in the back. So in the beginning, when I wasn't sure about something, I looked things up. Pretty easy read. I do agree with Stacy that some of the things you will find in cf literature can be a little scary.... and in the beginning I read through things and was wondering how many these things could happen to my kids. I would advise that you tell whoever you are trying to educate about cf that just because the book/literature might list something, it might not necessarily happen to your child. However, we must not sugar coat things and accept that anything is possible as this disease can be very unpredictable. Some people are not ready for that reality either...
My mom for example read everything that she could get her hands on pertaining to cf so she could be a support system for me. For the rest of my family, they prefer the short few sentence explanations of what's going on. Everyone is different. I would get your hands on materials first, preview them and maybe bookmark sections that you find helpful in explaining things...and make sure that if it's a book or article that it's current and not from 10 or 15 years ago. :0)
My mom for example read everything that she could get her hands on pertaining to cf so she could be a support system for me. For the rest of my family, they prefer the short few sentence explanations of what's going on. Everyone is different. I would get your hands on materials first, preview them and maybe bookmark sections that you find helpful in explaining things...and make sure that if it's a book or article that it's current and not from 10 or 15 years ago. :0)
3LilFightersmom
New member
When my youngest was dianosed the clinic xeroxed a copy of some sort of cf guide from the cf foundation...it was ok. I have found "cystic fibrosis, a guide for patient and family" by David M. Orenstein to be very helpful. It explains the basic genetic defect...talks about the various routes of diagnostics.... chapters that cover multiple issues that could be experienced with cf, covers some cf specific bacteria, drugs used to combat them...even the teenage years. I like it. Has a really helpful index in the back. So in the beginning, when I wasn't sure about something, I looked things up. Pretty easy read. I do agree with Stacy that some of the things you will find in cf literature can be a little scary.... and in the beginning I read through things and was wondering how many these things could happen to my kids. I would advise that you tell whoever you are trying to educate about cf that just because the book/literature might list something, it might not necessarily happen to your child. However, we must not sugar coat things and accept that anything is possible as this disease can be very unpredictable. Some people are not ready for that reality either...
My mom for example read everything that she could get her hands on pertaining to cf so she could be a support system for me. For the rest of my family, they prefer the short few sentence explanations of what's going on. Everyone is different. I would get your hands on materials first, preview them and maybe bookmark sections that you find helpful in explaining things...and make sure that if it's a book or article that it's current and not from 10 or 15 years ago. :0)
My mom for example read everything that she could get her hands on pertaining to cf so she could be a support system for me. For the rest of my family, they prefer the short few sentence explanations of what's going on. Everyone is different. I would get your hands on materials first, preview them and maybe bookmark sections that you find helpful in explaining things...and make sure that if it's a book or article that it's current and not from 10 or 15 years ago. :0)
3LilFightersmom
New member
When my youngest was dianosed the clinic xeroxed a copy of some sort of cf guide from the cf foundation...it was ok. I have found "cystic fibrosis, a guide for patient and family" by David M. Orenstein to be very helpful. It explains the basic genetic defect...talks about the various routes of diagnostics.... chapters that cover multiple issues that could be experienced with cf, covers some cf specific bacteria, drugs used to combat them...even the teenage years. I like it. Has a really helpful index in the back. So in the beginning, when I wasn't sure about something, I looked things up. Pretty easy read. I do agree with Stacy that some of the things you will find in cf literature can be a little scary.... and in the beginning I read through things and was wondering how many these things could happen to my kids. I would advise that you tell whoever you are trying to educate about cf that just because the book/literature might list something, it might not necessarily happen to your child. However, we must not sugar coat things and accept that anything is possible as this disease can be very unpredictable. Some people are not ready for that reality either...
My mom for example read everything that she could get her hands on pertaining to cf so she could be a support system for me. For the rest of my family, they prefer the short few sentence explanations of what's going on. Everyone is different. I would get your hands on materials first, preview them and maybe bookmark sections that you find helpful in explaining things...and make sure that if it's a book or article that it's current and not from 10 or 15 years ago. :0)
My mom for example read everything that she could get her hands on pertaining to cf so she could be a support system for me. For the rest of my family, they prefer the short few sentence explanations of what's going on. Everyone is different. I would get your hands on materials first, preview them and maybe bookmark sections that you find helpful in explaining things...and make sure that if it's a book or article that it's current and not from 10 or 15 years ago. :0)
3LilFightersmom
New member
When my youngest was dianosed the clinic xeroxed a copy of some sort of cf guide from the cf foundation...it was ok. I have found "cystic fibrosis, a guide for patient and family" by David M. Orenstein to be very helpful. It explains the basic genetic defect...talks about the various routes of diagnostics.... chapters that cover multiple issues that could be experienced with cf, covers some cf specific bacteria, drugs used to combat them...even the teenage years. I like it. Has a really helpful index in the back. So in the beginning, when I wasn't sure about something, I looked things up. Pretty easy read. I do agree with Stacy that some of the things you will find in cf literature can be a little scary.... and in the beginning I read through things and was wondering how many these things could happen to my kids. I would advise that you tell whoever you are trying to educate about cf that just because the book/literature might list something, it might not necessarily happen to your child. However, we must not sugar coat things and accept that anything is possible as this disease can be very unpredictable. Some people are not ready for that reality either...
My mom for example read everything that she could get her hands on pertaining to cf so she could be a support system for me. For the rest of my family, they prefer the short few sentence explanations of what's going on. Everyone is different. I would get your hands on materials first, preview them and maybe bookmark sections that you find helpful in explaining things...and make sure that if it's a book or article that it's current and not from 10 or 15 years ago. :0)
My mom for example read everything that she could get her hands on pertaining to cf so she could be a support system for me. For the rest of my family, they prefer the short few sentence explanations of what's going on. Everyone is different. I would get your hands on materials first, preview them and maybe bookmark sections that you find helpful in explaining things...and make sure that if it's a book or article that it's current and not from 10 or 15 years ago. :0)
3LilFightersmom
New member
When my youngest was dianosed the clinic xeroxed a copy of some sort of cf guide from the cf foundation...it was ok. I have found "cystic fibrosis, a guide for patient and family" by David M. Orenstein to be very helpful. It explains the basic genetic defect...talks about the various routes of diagnostics.... chapters that cover multiple issues that could be experienced with cf, covers some cf specific bacteria, drugs used to combat them...even the teenage years. I like it. Has a really helpful index in the back. So in the beginning, when I wasn't sure about something, I looked things up. Pretty easy read. I do agree with Stacy that some of the things you will find in cf literature can be a little scary.... and in the beginning I read through things and was wondering how many these things could happen to my kids. I would advise that you tell whoever you are trying to educate about cf that just because the book/literature might list something, it might not necessarily happen to your child. However, we must not sugar coat things and accept that anything is possible as this disease can be very unpredictable. Some people are not ready for that reality either...
<br />My mom for example read everything that she could get her hands on pertaining to cf so she could be a support system for me. For the rest of my family, they prefer the short few sentence explanations of what's going on. Everyone is different. I would get your hands on materials first, preview them and maybe bookmark sections that you find helpful in explaining things...and make sure that if it's a book or article that it's current and not from 10 or 15 years ago. :0)
<br />My mom for example read everything that she could get her hands on pertaining to cf so she could be a support system for me. For the rest of my family, they prefer the short few sentence explanations of what's going on. Everyone is different. I would get your hands on materials first, preview them and maybe bookmark sections that you find helpful in explaining things...and make sure that if it's a book or article that it's current and not from 10 or 15 years ago. :0)