Terminating pregnancy?

Emily65Roses · Feb 27, 2008

Just thought I'd pipe up to say Claudette is right. She never said it would be that way, but that Class I and Class II mutations typically produce those types of results.

Now I myself have a Class I and a Class II mutation, I'm 24, and I just blew 101 and 103 on my PFTs on Monday. That's damn good. But that's not to say I'm the norm. Or not.

There's no reason, however, to jump up Claudette's ass. She was posting very true information, and included the phrase "That's not necessarily the case but is a rule of thumb" which is fact. It does change from one person to the next, and very drastically. But if you look primarily at the mutations (which, as we know, is not reliable, you need to look at a lot --- but given that right now, all we have to look at for this fetus is the mutations, that's the only thing we can go on), a Class I and a Class II are more severely damaging by nature.

Emily65Roses · Feb 27, 2008

Just thought I'd pipe up to say Claudette is right. She never said it would be that way, but that Class I and Class II mutations typically produce those types of results.

Now I myself have a Class I and a Class II mutation, I'm 24, and I just blew 101 and 103 on my PFTs on Monday. That's damn good. But that's not to say I'm the norm. Or not.

There's no reason, however, to jump up Claudette's ass. She was posting very true information, and included the phrase "That's not necessarily the case but is a rule of thumb" which is fact. It does change from one person to the next, and very drastically. But if you look primarily at the mutations (which, as we know, is not reliable, you need to look at a lot --- but given that right now, all we have to look at for this fetus is the mutations, that's the only thing we can go on), a Class I and a Class II are more severely damaging by nature.

Emily65Roses · Feb 27, 2008

Just thought I'd pipe up to say Claudette is right. She never said it would be that way, but that Class I and Class II mutations typically produce those types of results.

Now I myself have a Class I and a Class II mutation, I'm 24, and I just blew 101 and 103 on my PFTs on Monday. That's damn good. But that's not to say I'm the norm. Or not.

There's no reason, however, to jump up Claudette's ass. She was posting very true information, and included the phrase "That's not necessarily the case but is a rule of thumb" which is fact. It does change from one person to the next, and very drastically. But if you look primarily at the mutations (which, as we know, is not reliable, you need to look at a lot --- but given that right now, all we have to look at for this fetus is the mutations, that's the only thing we can go on), a Class I and a Class II are more severely damaging by nature.

Emily65Roses · Feb 27, 2008

Just thought I'd pipe up to say Claudette is right. She never said it would be that way, but that Class I and Class II mutations typically produce those types of results.

Now I myself have a Class I and a Class II mutation, I'm 24, and I just blew 101 and 103 on my PFTs on Monday. That's damn good. But that's not to say I'm the norm. Or not.

There's no reason, however, to jump up Claudette's ass. She was posting very true information, and included the phrase "That's not necessarily the case but is a rule of thumb" which is fact. It does change from one person to the next, and very drastically. But if you look primarily at the mutations (which, as we know, is not reliable, you need to look at a lot --- but given that right now, all we have to look at for this fetus is the mutations, that's the only thing we can go on), a Class I and a Class II are more severely damaging by nature.

Emily65Roses · Feb 27, 2008

Just thought I'd pipe up to say Claudette is right. She never said it would be that way, but that Class I and Class II mutations typically produce those types of results.
 
 Now I myself have a Class I and a Class II mutation, I'm 24, and I just blew 101 and 103 on my PFTs on Monday. That's damn good. But that's not to say I'm the norm. Or not.
 
 There's no reason, however, to jump up Claudette's ass. She was posting very true information, and included the phrase "That's not necessarily the case but is a rule of thumb" which is fact. It does change from one person to the next, and very drastically. But if you look primarily at the mutations (which, as we know, is not reliable, you need to look at a lot --- but given that right now, all we have to look at for this fetus is the mutations, that's the only thing we can go on), a Class I and a Class II are more severely damaging by nature.

chrissyd · Feb 27, 2008

I can not give you any advice on raising a child with CF. Because I haven't had to. I have CF and am 30 years old. I'll keep my personal opinions about this topic out of my reply (as I can not have children)...

I have found some websites and articles you may want to look over. I think you and your husband; will be able to make the right choice with or with out my info; but just to throw some info out there for you:

<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Cystic_fibrosis">Wikipedia</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.medicalnewstoday.com/sections/cystic_fibrosis/">Listing of the latest articles on CF</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/StayingHealthy/">CFF.org</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://snp.wustl.edu/snp-and-fp-tdi-
.resources/abstracts/Koboldt_Cystic_Fibrosis_Genetics.ppt#1">2003 slide show</a>

<img src="i/expressions/rose.gif" border="0">

chrissyd · Feb 27, 2008

I can not give you any advice on raising a child with CF. Because I haven't had to. I have CF and am 30 years old. I'll keep my personal opinions about this topic out of my reply (as I can not have children)...

I have found some websites and articles you may want to look over. I think you and your husband; will be able to make the right choice with or with out my info; but just to throw some info out there for you:

<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Cystic_fibrosis">Wikipedia</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.medicalnewstoday.com/sections/cystic_fibrosis/">Listing of the latest articles on CF</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/StayingHealthy/">CFF.org</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://snp.wustl.edu/snp-and-fp-tdi-
.resources/abstracts/Koboldt_Cystic_Fibrosis_Genetics.ppt#1">2003 slide show</a>

<img src="i/expressions/rose.gif" border="0">

chrissyd · Feb 27, 2008

I can not give you any advice on raising a child with CF. Because I haven't had to. I have CF and am 30 years old. I'll keep my personal opinions about this topic out of my reply (as I can not have children)...

I have found some websites and articles you may want to look over. I think you and your husband; will be able to make the right choice with or with out my info; but just to throw some info out there for you:

<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Cystic_fibrosis">Wikipedia</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.medicalnewstoday.com/sections/cystic_fibrosis/">Listing of the latest articles on CF</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/StayingHealthy/">CFF.org</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://snp.wustl.edu/snp-and-fp-tdi-
.resources/abstracts/Koboldt_Cystic_Fibrosis_Genetics.ppt#1">2003 slide show</a>

<img src="i/expressions/rose.gif" border="0">

chrissyd · Feb 27, 2008

I can not give you any advice on raising a child with CF. Because I haven't had to. I have CF and am 30 years old. I'll keep my personal opinions about this topic out of my reply (as I can not have children)...

I have found some websites and articles you may want to look over. I think you and your husband; will be able to make the right choice with or with out my info; but just to throw some info out there for you:

<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Cystic_fibrosis">Wikipedia</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.medicalnewstoday.com/sections/cystic_fibrosis/">Listing of the latest articles on CF</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/StayingHealthy/">CFF.org</a>

<a target=_blank class=ftalternatingbarlinklarge href="http://snp.wustl.edu/snp-and-fp-tdi-
.resources/abstracts/Koboldt_Cystic_Fibrosis_Genetics.ppt#1">2003 slide show</a>

<img src="i/expressions/rose.gif" border="0">

chrissyd · Feb 27, 2008

I can not give you any advice on raising a child with CF. Because I haven't had to. I have CF and am 30 years old. I'll keep my personal opinions about this topic out of my reply (as I can not have children)...
 
 I have found some websites and articles you may want to look over. I think you and your husband; will be able to make the right choice with or with out my info; but just to throw some info out there for you:
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Cystic_fibrosis">Wikipedia</a>
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.medicalnewstoday.com/sections/cystic_fibrosis/">Listing of the latest articles on CF</a>
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/StayingHealthy/">CFF.org</a>
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://snp.wustl.edu/snp-and-fp-tdi-
 .resources/abstracts/Koboldt_Cystic_Fibrosis_Genetics.ppt#1">2003 slide show</a>
 
 
 <img src="i/expressions/rose.gif" border="0">

point · Feb 27, 2008

To the point on Class I/Class II mutations, based on genetic and biomolecular descriptions these two mutation classes result in the worst protein set-up. That does not mean they will have the worst outcome in actual health. Health outcome can not be categorized as the mutation class and its function in the body are categorized.

Median life expectancy is closer to 40 than it is 30 (37 on CFF, unless it has gone up to 38 now). It is due to some more mild cases, but it is also due to improved treatment therapies and changes in care such as tobi, zithromax, hyptertonic saline, ealier dx w/ newborn screening, more accurate PFT, standardization of treatment, education of the medical community & patients, ID of additional mutations, to name some examples off the top of my head.

CF is not fun or easy and there are many who have died b/c of it. There is a lot of daily upkeep (& $$$) just to stay healthy and it can be very frustrating. Dr. appt's and vitamins, nebulizer treatments, daily exercise, chest therapy all just to stay healthy can really piss off a CF patient. <img src="i/expressions/face-icon-small-happy.gif" border="0"> (just being honest on the frustration part)

But, on a personal note, my brothers and I fall into the Class I/Class II mutations. My oldest brother is 35 and has never been hospitalized. He takes enzymes, hypertonic saline, PFTs in the 80s, and can't have children (wanted to highlight that many male's w/ CF do not have children in the most typical, direct way). My other brother is 32, has been hospitalized twice in his 30s, and has more upkeep than us, is also sterile (tobi, hypertonic saline, albuterol, enzymes, PFTs in the 70s). I am 30 and was hospitalized once in college. I take enzymes and hypertonic saline (PFTs over 100). We all work full-time, are very active in hobbies and interests, live on our own in our own houses, function and 'appear to be normal, every day people'.

We have exactly the same mutations, and we all present differently than the described worst-mutation genetic description (class I/class II) & in comparison to each others' symptoms. So, I guess based on symptoms we have 'mild CF' so maybe even though we have the worst mutations we will be driving that median life expectancy up. Kudos to random luck.

point · Feb 27, 2008

To the point on Class I/Class II mutations, based on genetic and biomolecular descriptions these two mutation classes result in the worst protein set-up. That does not mean they will have the worst outcome in actual health. Health outcome can not be categorized as the mutation class and its function in the body are categorized.

Median life expectancy is closer to 40 than it is 30 (37 on CFF, unless it has gone up to 38 now). It is due to some more mild cases, but it is also due to improved treatment therapies and changes in care such as tobi, zithromax, hyptertonic saline, ealier dx w/ newborn screening, more accurate PFT, standardization of treatment, education of the medical community & patients, ID of additional mutations, to name some examples off the top of my head.

CF is not fun or easy and there are many who have died b/c of it. There is a lot of daily upkeep (& $$$) just to stay healthy and it can be very frustrating. Dr. appt's and vitamins, nebulizer treatments, daily exercise, chest therapy all just to stay healthy can really piss off a CF patient. <img src="i/expressions/face-icon-small-happy.gif" border="0"> (just being honest on the frustration part)

But, on a personal note, my brothers and I fall into the Class I/Class II mutations. My oldest brother is 35 and has never been hospitalized. He takes enzymes, hypertonic saline, PFTs in the 80s, and can't have children (wanted to highlight that many male's w/ CF do not have children in the most typical, direct way). My other brother is 32, has been hospitalized twice in his 30s, and has more upkeep than us, is also sterile (tobi, hypertonic saline, albuterol, enzymes, PFTs in the 70s). I am 30 and was hospitalized once in college. I take enzymes and hypertonic saline (PFTs over 100). We all work full-time, are very active in hobbies and interests, live on our own in our own houses, function and 'appear to be normal, every day people'.

We have exactly the same mutations, and we all present differently than the described worst-mutation genetic description (class I/class II) & in comparison to each others' symptoms. So, I guess based on symptoms we have 'mild CF' so maybe even though we have the worst mutations we will be driving that median life expectancy up. Kudos to random luck.

point · Feb 27, 2008

To the point on Class I/Class II mutations, based on genetic and biomolecular descriptions these two mutation classes result in the worst protein set-up. That does not mean they will have the worst outcome in actual health. Health outcome can not be categorized as the mutation class and its function in the body are categorized.

Median life expectancy is closer to 40 than it is 30 (37 on CFF, unless it has gone up to 38 now). It is due to some more mild cases, but it is also due to improved treatment therapies and changes in care such as tobi, zithromax, hyptertonic saline, ealier dx w/ newborn screening, more accurate PFT, standardization of treatment, education of the medical community & patients, ID of additional mutations, to name some examples off the top of my head.

CF is not fun or easy and there are many who have died b/c of it. There is a lot of daily upkeep (& $$$) just to stay healthy and it can be very frustrating. Dr. appt's and vitamins, nebulizer treatments, daily exercise, chest therapy all just to stay healthy can really piss off a CF patient. <img src="i/expressions/face-icon-small-happy.gif" border="0"> (just being honest on the frustration part)

But, on a personal note, my brothers and I fall into the Class I/Class II mutations. My oldest brother is 35 and has never been hospitalized. He takes enzymes, hypertonic saline, PFTs in the 80s, and can't have children (wanted to highlight that many male's w/ CF do not have children in the most typical, direct way). My other brother is 32, has been hospitalized twice in his 30s, and has more upkeep than us, is also sterile (tobi, hypertonic saline, albuterol, enzymes, PFTs in the 70s). I am 30 and was hospitalized once in college. I take enzymes and hypertonic saline (PFTs over 100). We all work full-time, are very active in hobbies and interests, live on our own in our own houses, function and 'appear to be normal, every day people'.

We have exactly the same mutations, and we all present differently than the described worst-mutation genetic description (class I/class II) & in comparison to each others' symptoms. So, I guess based on symptoms we have 'mild CF' so maybe even though we have the worst mutations we will be driving that median life expectancy up. Kudos to random luck.

point · Feb 27, 2008

To the point on Class I/Class II mutations, based on genetic and biomolecular descriptions these two mutation classes result in the worst protein set-up. That does not mean they will have the worst outcome in actual health. Health outcome can not be categorized as the mutation class and its function in the body are categorized.

Median life expectancy is closer to 40 than it is 30 (37 on CFF, unless it has gone up to 38 now). It is due to some more mild cases, but it is also due to improved treatment therapies and changes in care such as tobi, zithromax, hyptertonic saline, ealier dx w/ newborn screening, more accurate PFT, standardization of treatment, education of the medical community & patients, ID of additional mutations, to name some examples off the top of my head.

CF is not fun or easy and there are many who have died b/c of it. There is a lot of daily upkeep (& $$$) just to stay healthy and it can be very frustrating. Dr. appt's and vitamins, nebulizer treatments, daily exercise, chest therapy all just to stay healthy can really piss off a CF patient. <img src="i/expressions/face-icon-small-happy.gif" border="0"> (just being honest on the frustration part)

But, on a personal note, my brothers and I fall into the Class I/Class II mutations. My oldest brother is 35 and has never been hospitalized. He takes enzymes, hypertonic saline, PFTs in the 80s, and can't have children (wanted to highlight that many male's w/ CF do not have children in the most typical, direct way). My other brother is 32, has been hospitalized twice in his 30s, and has more upkeep than us, is also sterile (tobi, hypertonic saline, albuterol, enzymes, PFTs in the 70s). I am 30 and was hospitalized once in college. I take enzymes and hypertonic saline (PFTs over 100). We all work full-time, are very active in hobbies and interests, live on our own in our own houses, function and 'appear to be normal, every day people'.

We have exactly the same mutations, and we all present differently than the described worst-mutation genetic description (class I/class II) & in comparison to each others' symptoms. So, I guess based on symptoms we have 'mild CF' so maybe even though we have the worst mutations we will be driving that median life expectancy up. Kudos to random luck.

point · Feb 27, 2008

To the point on Class I/Class II mutations, based on genetic and biomolecular descriptions these two mutation classes result in the worst protein set-up. That does not mean they will have the worst outcome in actual health. Health outcome can not be categorized as the mutation class and its function in the body are categorized.
 
 Median life expectancy is closer to 40 than it is 30 (37 on CFF, unless it has gone up to 38 now). It is due to some more mild cases, but it is also due to improved treatment therapies and changes in care such as tobi, zithromax, hyptertonic saline, ealier dx w/ newborn screening, more accurate PFT, standardization of treatment, education of the medical community & patients, ID of additional mutations, to name some examples off the top of my head.
 
 CF is not fun or easy and there are many who have died b/c of it. There is a lot of daily upkeep (& $$$) just to stay healthy and it can be very frustrating. Dr. appt's and vitamins, nebulizer treatments, daily exercise, chest therapy all just to stay healthy can really piss off a CF patient. <img src="i/expressions/face-icon-small-happy.gif" border="0"> (just being honest on the frustration part)
 
 But, on a personal note, my brothers and I fall into the Class I/Class II mutations. My oldest brother is 35 and has never been hospitalized. He takes enzymes, hypertonic saline, PFTs in the 80s, and can't have children (wanted to highlight that many male's w/ CF do not have children in the most typical, direct way). My other brother is 32, has been hospitalized twice in his 30s, and has more upkeep than us, is also sterile (tobi, hypertonic saline, albuterol, enzymes, PFTs in the 70s). I am 30 and was hospitalized once in college. I take enzymes and hypertonic saline (PFTs over 100). We all work full-time, are very active in hobbies and interests, live on our own in our own houses, function and 'appear to be normal, every day people'.
 
 We have exactly the same mutations, and we all present differently than the described worst-mutation genetic description (class I/class II) & in comparison to each others' symptoms. So, I guess based on symptoms we have 'mild CF' so maybe even though we have the worst mutations we will be driving that median life expectancy up. Kudos to random luck.

TonyaH · Feb 27, 2008

Hi laxgirl,
I just wanted to apologize to you that your post has become so heated. I also wanted to welcome you. I have a 10 year old with CF. For the first 8 1/2 years of his life he did very well with nothing but digestive issues which left him pancreatic insufficient. He was always easily treated with enzymes and prevacid.

Just in the past year we have begun having lung exacerbations, requiring his first hospitalization and picc line for home infusions. While it was scary for him, we got through it. He is beginning another exacerbation now and we may be looking at more iv meds, but he already feels much more comfortable with the idea. Not thrilled about it, but more comfortable.

Even with all of this, he leads a very normal life! He's in cub scouts, swims, golfs, plays tennis, and is in all of the advanced learning programs at school. CF does not hold him,or us, back.

Claudette was wise, though, to explain the other side of things to you. This disease is time consuming, expensive, and progressive. This site is so good for parents because it is educational, and a place for us to discuss the every day part of CF,,,not just the three month clinic visits. We help each other hope for the best, but we also help each other prepare for the "not so great". The way we prepare is candidly sharing our own experiences so others can learn from them.

And Dave, I understand you are rather new here, so I wanted to draw your attention to the top of your computer screen where you will find the disclaimer that this site is not a replacement for proper medical care. I can see where, as a new parent you are looking for positive information. But the original poster was asking for input on both sides of this topic. I hope we can learn about you and your family and get to know your story. One day you will be one of the "older parents" who can help new parents through what we have all been through. And we have all been there!

LaxGirl, I welcome you here and will keep you and your husband in my thoughts!

TonyaH · Feb 27, 2008

Hi laxgirl,
I just wanted to apologize to you that your post has become so heated. I also wanted to welcome you. I have a 10 year old with CF. For the first 8 1/2 years of his life he did very well with nothing but digestive issues which left him pancreatic insufficient. He was always easily treated with enzymes and prevacid.

Just in the past year we have begun having lung exacerbations, requiring his first hospitalization and picc line for home infusions. While it was scary for him, we got through it. He is beginning another exacerbation now and we may be looking at more iv meds, but he already feels much more comfortable with the idea. Not thrilled about it, but more comfortable.

Even with all of this, he leads a very normal life! He's in cub scouts, swims, golfs, plays tennis, and is in all of the advanced learning programs at school. CF does not hold him,or us, back.

Claudette was wise, though, to explain the other side of things to you. This disease is time consuming, expensive, and progressive. This site is so good for parents because it is educational, and a place for us to discuss the every day part of CF,,,not just the three month clinic visits. We help each other hope for the best, but we also help each other prepare for the "not so great". The way we prepare is candidly sharing our own experiences so others can learn from them.

And Dave, I understand you are rather new here, so I wanted to draw your attention to the top of your computer screen where you will find the disclaimer that this site is not a replacement for proper medical care. I can see where, as a new parent you are looking for positive information. But the original poster was asking for input on both sides of this topic. I hope we can learn about you and your family and get to know your story. One day you will be one of the "older parents" who can help new parents through what we have all been through. And we have all been there!

LaxGirl, I welcome you here and will keep you and your husband in my thoughts!

TonyaH · Feb 27, 2008

Hi laxgirl,
I just wanted to apologize to you that your post has become so heated. I also wanted to welcome you. I have a 10 year old with CF. For the first 8 1/2 years of his life he did very well with nothing but digestive issues which left him pancreatic insufficient. He was always easily treated with enzymes and prevacid.

Just in the past year we have begun having lung exacerbations, requiring his first hospitalization and picc line for home infusions. While it was scary for him, we got through it. He is beginning another exacerbation now and we may be looking at more iv meds, but he already feels much more comfortable with the idea. Not thrilled about it, but more comfortable.

Even with all of this, he leads a very normal life! He's in cub scouts, swims, golfs, plays tennis, and is in all of the advanced learning programs at school. CF does not hold him,or us, back.

Claudette was wise, though, to explain the other side of things to you. This disease is time consuming, expensive, and progressive. This site is so good for parents because it is educational, and a place for us to discuss the every day part of CF,,,not just the three month clinic visits. We help each other hope for the best, but we also help each other prepare for the "not so great". The way we prepare is candidly sharing our own experiences so others can learn from them.

And Dave, I understand you are rather new here, so I wanted to draw your attention to the top of your computer screen where you will find the disclaimer that this site is not a replacement for proper medical care. I can see where, as a new parent you are looking for positive information. But the original poster was asking for input on both sides of this topic. I hope we can learn about you and your family and get to know your story. One day you will be one of the "older parents" who can help new parents through what we have all been through. And we have all been there!

LaxGirl, I welcome you here and will keep you and your husband in my thoughts!

TonyaH · Feb 27, 2008

Hi laxgirl,
I just wanted to apologize to you that your post has become so heated. I also wanted to welcome you. I have a 10 year old with CF. For the first 8 1/2 years of his life he did very well with nothing but digestive issues which left him pancreatic insufficient. He was always easily treated with enzymes and prevacid.

Just in the past year we have begun having lung exacerbations, requiring his first hospitalization and picc line for home infusions. While it was scary for him, we got through it. He is beginning another exacerbation now and we may be looking at more iv meds, but he already feels much more comfortable with the idea. Not thrilled about it, but more comfortable.

Even with all of this, he leads a very normal life! He's in cub scouts, swims, golfs, plays tennis, and is in all of the advanced learning programs at school. CF does not hold him,or us, back.

Claudette was wise, though, to explain the other side of things to you. This disease is time consuming, expensive, and progressive. This site is so good for parents because it is educational, and a place for us to discuss the every day part of CF,,,not just the three month clinic visits. We help each other hope for the best, but we also help each other prepare for the "not so great". The way we prepare is candidly sharing our own experiences so others can learn from them.

And Dave, I understand you are rather new here, so I wanted to draw your attention to the top of your computer screen where you will find the disclaimer that this site is not a replacement for proper medical care. I can see where, as a new parent you are looking for positive information. But the original poster was asking for input on both sides of this topic. I hope we can learn about you and your family and get to know your story. One day you will be one of the "older parents" who can help new parents through what we have all been through. And we have all been there!

LaxGirl, I welcome you here and will keep you and your husband in my thoughts!

TonyaH · Feb 27, 2008

Hi laxgirl,
 I just wanted to apologize to you that your post has become so heated. I also wanted to welcome you. I have a 10 year old with CF. For the first 8 1/2 years of his life he did very well with nothing but digestive issues which left him pancreatic insufficient. He was always easily treated with enzymes and prevacid.
 
 Just in the past year we have begun having lung exacerbations, requiring his first hospitalization and picc line for home infusions. While it was scary for him, we got through it. He is beginning another exacerbation now and we may be looking at more iv meds, but he already feels much more comfortable with the idea. Not thrilled about it, but more comfortable.
 
 Even with all of this, he leads a very normal life! He's in cub scouts, swims, golfs, plays tennis, and is in all of the advanced learning programs at school. CF does not hold him,or us, back.
 
 Claudette was wise, though, to explain the other side of things to you. This disease is time consuming, expensive, and progressive. This site is so good for parents because it is educational, and a place for us to discuss the every day part of CF,,,not just the three month clinic visits. We help each other hope for the best, but we also help each other prepare for the "not so great". The way we prepare is candidly sharing our own experiences so others can learn from them.
 
 And Dave, I understand you are rather new here, so I wanted to draw your attention to the top of your computer screen where you will find the disclaimer that this site is not a replacement for proper medical care. I can see where, as a new parent you are looking for positive information. But the original poster was asking for input on both sides of this topic. I hope we can learn about you and your family and get to know your story. One day you will be one of the "older parents" who can help new parents through what we have all been through. And we have all been there!
 
 LaxGirl, I welcome you here and will keep you and your husband in my thoughts!

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