The Sweet And The Sour...

Mommafirst · Mar 30, 2009

Hi Jonathan,

Your post has me tearing up a bit, because I sooo remember those feelings you explain...looking at a newborn and being full of wanting to know what, when, how, etc. As I got to know my daughter, saw her personality and watched her grow into a very normal, predominantly healthy kid, those panicky feelings have subsided a lot.

Of course there is no predicting how CF will progress for each of our kids, but the odds are good that it will be slow and aided by all the great meds and treatments available. I find that I'm not so worried about the end stage of this disease, as I am about the heavy treatment med routine that they take even when they are doing great -- it is a great thing, but comes with a lot of work on my part (which I'm willing to do) and a lot of frustration on my daughters part (which is hard to watch).

Anyway, welcome to the forum. The adults here are an inspiration to us parents, so be sure to check out the adult forum.

Mommafirst · Mar 30, 2009

Hi Jonathan,

Your post has me tearing up a bit, because I sooo remember those feelings you explain...looking at a newborn and being full of wanting to know what, when, how, etc. As I got to know my daughter, saw her personality and watched her grow into a very normal, predominantly healthy kid, those panicky feelings have subsided a lot.

Of course there is no predicting how CF will progress for each of our kids, but the odds are good that it will be slow and aided by all the great meds and treatments available. I find that I'm not so worried about the end stage of this disease, as I am about the heavy treatment med routine that they take even when they are doing great -- it is a great thing, but comes with a lot of work on my part (which I'm willing to do) and a lot of frustration on my daughters part (which is hard to watch).

Anyway, welcome to the forum. The adults here are an inspiration to us parents, so be sure to check out the adult forum.

Mommafirst · Mar 30, 2009

Hi Jonathan,

Your post has me tearing up a bit, because I sooo remember those feelings you explain...looking at a newborn and being full of wanting to know what, when, how, etc. As I got to know my daughter, saw her personality and watched her grow into a very normal, predominantly healthy kid, those panicky feelings have subsided a lot.

Of course there is no predicting how CF will progress for each of our kids, but the odds are good that it will be slow and aided by all the great meds and treatments available. I find that I'm not so worried about the end stage of this disease, as I am about the heavy treatment med routine that they take even when they are doing great -- it is a great thing, but comes with a lot of work on my part (which I'm willing to do) and a lot of frustration on my daughters part (which is hard to watch).

Anyway, welcome to the forum. The adults here are an inspiration to us parents, so be sure to check out the adult forum.

Mommafirst · Mar 30, 2009

Hi Jonathan,

Your post has me tearing up a bit, because I sooo remember those feelings you explain...looking at a newborn and being full of wanting to know what, when, how, etc. As I got to know my daughter, saw her personality and watched her grow into a very normal, predominantly healthy kid, those panicky feelings have subsided a lot.

Of course there is no predicting how CF will progress for each of our kids, but the odds are good that it will be slow and aided by all the great meds and treatments available. I find that I'm not so worried about the end stage of this disease, as I am about the heavy treatment med routine that they take even when they are doing great -- it is a great thing, but comes with a lot of work on my part (which I'm willing to do) and a lot of frustration on my daughters part (which is hard to watch).

Anyway, welcome to the forum. The adults here are an inspiration to us parents, so be sure to check out the adult forum.

Mommafirst · Mar 30, 2009

Hi Jonathan,
 
 Your post has me tearing up a bit, because I sooo remember those feelings you explain...looking at a newborn and being full of wanting to know what, when, how, etc. As I got to know my daughter, saw her personality and watched her grow into a very normal, predominantly healthy kid, those panicky feelings have subsided a lot.
 
 Of course there is no predicting how CF will progress for each of our kids, but the odds are good that it will be slow and aided by all the great meds and treatments available. I find that I'm not so worried about the end stage of this disease, as I am about the heavy treatment med routine that they take even when they are doing great -- it is a great thing, but comes with a lot of work on my part (which I'm willing to do) and a lot of frustration on my daughters part (which is hard to watch).
 
 Anyway, welcome to the forum. The adults here are an inspiration to us parents, so be sure to check out the adult forum.

kcampbell · Mar 30, 2009

I know how you feel. We were in the hospital with our son after he had heart surgery at three days old, when the doc broke the news to us. They then tested our other two children, and we have one other daughter who has CF as well. If it is any comfort to you , she was just about two before we found out, and she has been fairly healthy. She is very smart, active, and funny. And our son who is now 8 months has been very healthy too. I wish you the best.

kcampbell · Mar 30, 2009

I know how you feel. We were in the hospital with our son after he had heart surgery at three days old, when the doc broke the news to us. They then tested our other two children, and we have one other daughter who has CF as well. If it is any comfort to you , she was just about two before we found out, and she has been fairly healthy. She is very smart, active, and funny. And our son who is now 8 months has been very healthy too. I wish you the best.

kcampbell · Mar 30, 2009

I know how you feel. We were in the hospital with our son after he had heart surgery at three days old, when the doc broke the news to us. They then tested our other two children, and we have one other daughter who has CF as well. If it is any comfort to you , she was just about two before we found out, and she has been fairly healthy. She is very smart, active, and funny. And our son who is now 8 months has been very healthy too. I wish you the best.

kcampbell · Mar 30, 2009

I know how you feel. We were in the hospital with our son after he had heart surgery at three days old, when the doc broke the news to us. They then tested our other two children, and we have one other daughter who has CF as well. If it is any comfort to you , she was just about two before we found out, and she has been fairly healthy. She is very smart, active, and funny. And our son who is now 8 months has been very healthy too. I wish you the best.

kcampbell · Mar 30, 2009

I know how you feel. We were in the hospital with our son after he had heart surgery at three days old, when the doc broke the news to us. They then tested our other two children, and we have one other daughter who has CF as well. If it is any comfort to you , she was just about two before we found out, and she has been fairly healthy. She is very smart, active, and funny. And our son who is now 8 months has been very healthy too. I wish you the best.

NYCLawGirl · Mar 30, 2009

Hi Jonathon:

First off, sorry to hear you're feeling overwhelmed - I can only imagine! I'm not a CF parent, but I really admire you guys on the whole. I know I'm eternally grateful to my parents for their strength in the face of this disease!

As to your questions, I think Tom got it best. CF is progressive and really unpredictable. Unfortunately, there are still far too many lives claimed by this disease, and some of them at a very young age. The good news, however, is that there is also a lot of hope.

You mentioned your son's mutations. Right now there are three mutation-specific drugs in testing, all of which show tremendous potential for helping CFers with those mutations avoid or slow the progress of serious lung disease. The GREAT news is that two of these three drugs target your son's mutations (one targets G551D, the other DF508)! Both of those two are in testing right now through a partnership with the CFF and Vertex Pharm, and hopefully they'll be on the market within a few years. Definitely something to be excited about!

Proactive and preventative care is your best weapon in the fight against CF. Much as we would all love to believe it, pretending this disease is no longer a threat won't help your son at all. By the same token, you should definitely plan for your soon to live a great life, grow up, and pursue his dreams.

When I was diagnosed 27 years ago my parents were told to take me home and love me for as long as they had me, because I wouldn't last long. Instead they took me home, showered me with love and support, got me the best damn doctors they could find, and encouraged me every step of the way to be active, get a college education, go to law school, move out on my own, and generally pursue everything I wanted to try. It was the absolute best gift they could have given me, and I'm still here so they must have done something right!

NYCLawGirl · Mar 30, 2009

Hi Jonathon:

First off, sorry to hear you're feeling overwhelmed - I can only imagine! I'm not a CF parent, but I really admire you guys on the whole. I know I'm eternally grateful to my parents for their strength in the face of this disease!

As to your questions, I think Tom got it best. CF is progressive and really unpredictable. Unfortunately, there are still far too many lives claimed by this disease, and some of them at a very young age. The good news, however, is that there is also a lot of hope.

You mentioned your son's mutations. Right now there are three mutation-specific drugs in testing, all of which show tremendous potential for helping CFers with those mutations avoid or slow the progress of serious lung disease. The GREAT news is that two of these three drugs target your son's mutations (one targets G551D, the other DF508)! Both of those two are in testing right now through a partnership with the CFF and Vertex Pharm, and hopefully they'll be on the market within a few years. Definitely something to be excited about!

Proactive and preventative care is your best weapon in the fight against CF. Much as we would all love to believe it, pretending this disease is no longer a threat won't help your son at all. By the same token, you should definitely plan for your soon to live a great life, grow up, and pursue his dreams.

When I was diagnosed 27 years ago my parents were told to take me home and love me for as long as they had me, because I wouldn't last long. Instead they took me home, showered me with love and support, got me the best damn doctors they could find, and encouraged me every step of the way to be active, get a college education, go to law school, move out on my own, and generally pursue everything I wanted to try. It was the absolute best gift they could have given me, and I'm still here so they must have done something right!

NYCLawGirl · Mar 30, 2009

Hi Jonathon:

First off, sorry to hear you're feeling overwhelmed - I can only imagine! I'm not a CF parent, but I really admire you guys on the whole. I know I'm eternally grateful to my parents for their strength in the face of this disease!

As to your questions, I think Tom got it best. CF is progressive and really unpredictable. Unfortunately, there are still far too many lives claimed by this disease, and some of them at a very young age. The good news, however, is that there is also a lot of hope.

You mentioned your son's mutations. Right now there are three mutation-specific drugs in testing, all of which show tremendous potential for helping CFers with those mutations avoid or slow the progress of serious lung disease. The GREAT news is that two of these three drugs target your son's mutations (one targets G551D, the other DF508)! Both of those two are in testing right now through a partnership with the CFF and Vertex Pharm, and hopefully they'll be on the market within a few years. Definitely something to be excited about!

Proactive and preventative care is your best weapon in the fight against CF. Much as we would all love to believe it, pretending this disease is no longer a threat won't help your son at all. By the same token, you should definitely plan for your soon to live a great life, grow up, and pursue his dreams.

When I was diagnosed 27 years ago my parents were told to take me home and love me for as long as they had me, because I wouldn't last long. Instead they took me home, showered me with love and support, got me the best damn doctors they could find, and encouraged me every step of the way to be active, get a college education, go to law school, move out on my own, and generally pursue everything I wanted to try. It was the absolute best gift they could have given me, and I'm still here so they must have done something right!

NYCLawGirl · Mar 30, 2009

Hi Jonathon:

First off, sorry to hear you're feeling overwhelmed - I can only imagine! I'm not a CF parent, but I really admire you guys on the whole. I know I'm eternally grateful to my parents for their strength in the face of this disease!

As to your questions, I think Tom got it best. CF is progressive and really unpredictable. Unfortunately, there are still far too many lives claimed by this disease, and some of them at a very young age. The good news, however, is that there is also a lot of hope.

You mentioned your son's mutations. Right now there are three mutation-specific drugs in testing, all of which show tremendous potential for helping CFers with those mutations avoid or slow the progress of serious lung disease. The GREAT news is that two of these three drugs target your son's mutations (one targets G551D, the other DF508)! Both of those two are in testing right now through a partnership with the CFF and Vertex Pharm, and hopefully they'll be on the market within a few years. Definitely something to be excited about!

Proactive and preventative care is your best weapon in the fight against CF. Much as we would all love to believe it, pretending this disease is no longer a threat won't help your son at all. By the same token, you should definitely plan for your soon to live a great life, grow up, and pursue his dreams.

When I was diagnosed 27 years ago my parents were told to take me home and love me for as long as they had me, because I wouldn't last long. Instead they took me home, showered me with love and support, got me the best damn doctors they could find, and encouraged me every step of the way to be active, get a college education, go to law school, move out on my own, and generally pursue everything I wanted to try. It was the absolute best gift they could have given me, and I'm still here so they must have done something right!

NYCLawGirl · Mar 30, 2009

Hi Jonathon:
 
 First off, sorry to hear you're feeling overwhelmed - I can only imagine! I'm not a CF parent, but I really admire you guys on the whole. I know I'm eternally grateful to my parents for their strength in the face of this disease!
 
 As to your questions, I think Tom got it best. CF is progressive and really unpredictable. Unfortunately, there are still far too many lives claimed by this disease, and some of them at a very young age. The good news, however, is that there is also a lot of hope.
 
 You mentioned your son's mutations. Right now there are three mutation-specific drugs in testing, all of which show tremendous potential for helping CFers with those mutations avoid or slow the progress of serious lung disease. The GREAT news is that two of these three drugs target your son's mutations (one targets G551D, the other DF508)! Both of those two are in testing right now through a partnership with the CFF and Vertex Pharm, and hopefully they'll be on the market within a few years. Definitely something to be excited about!
 
 Proactive and preventative care is your best weapon in the fight against CF. Much as we would all love to believe it, pretending this disease is no longer a threat won't help your son at all. By the same token, you should definitely plan for your soon to live a great life, grow up, and pursue his dreams.
 
 When I was diagnosed 27 years ago my parents were told to take me home and love me for as long as they had me, because I wouldn't last long. Instead they took me home, showered me with love and support, got me the best damn doctors they could find, and encouraged me every step of the way to be active, get a college education, go to law school, move out on my own, and generally pursue everything I wanted to try. It was the absolute best gift they could have given me, and I'm still here so they must have done something right!

JonJon8320 · Mar 30, 2009

Thanks to all for the information. The more information and input I get, the better it helps me. Tom's matter of fact information was very good. Very grounding in everything. It's also nice to see Piper's input, as its amazing to see what can happen with CF. I could make some sort of joke about her being a lawyer as another bad symptom of CF if I could find a way to formulate the joke, but it honestly is really nice to see the successes those with CF can make in life.

Already today they've added another drug to his daily routine. They want him to take Zantac three times a day. The pharmacy gave us a generic, but I remember reading we shouldn't be taking generics, so I'll have to ask. Maybe that is just the enzymes where the brand name is important?

JonJon8320 · Mar 30, 2009

Thanks to all for the information. The more information and input I get, the better it helps me. Tom's matter of fact information was very good. Very grounding in everything. It's also nice to see Piper's input, as its amazing to see what can happen with CF. I could make some sort of joke about her being a lawyer as another bad symptom of CF if I could find a way to formulate the joke, but it honestly is really nice to see the successes those with CF can make in life.

Already today they've added another drug to his daily routine. They want him to take Zantac three times a day. The pharmacy gave us a generic, but I remember reading we shouldn't be taking generics, so I'll have to ask. Maybe that is just the enzymes where the brand name is important?

JonJon8320 · Mar 30, 2009

Thanks to all for the information. The more information and input I get, the better it helps me. Tom's matter of fact information was very good. Very grounding in everything. It's also nice to see Piper's input, as its amazing to see what can happen with CF. I could make some sort of joke about her being a lawyer as another bad symptom of CF if I could find a way to formulate the joke, but it honestly is really nice to see the successes those with CF can make in life.

Already today they've added another drug to his daily routine. They want him to take Zantac three times a day. The pharmacy gave us a generic, but I remember reading we shouldn't be taking generics, so I'll have to ask. Maybe that is just the enzymes where the brand name is important?

JonJon8320 · Mar 30, 2009

Thanks to all for the information. The more information and input I get, the better it helps me. Tom's matter of fact information was very good. Very grounding in everything. It's also nice to see Piper's input, as its amazing to see what can happen with CF. I could make some sort of joke about her being a lawyer as another bad symptom of CF if I could find a way to formulate the joke, but it honestly is really nice to see the successes those with CF can make in life.

Already today they've added another drug to his daily routine. They want him to take Zantac three times a day. The pharmacy gave us a generic, but I remember reading we shouldn't be taking generics, so I'll have to ask. Maybe that is just the enzymes where the brand name is important?

JonJon8320 · Mar 30, 2009

Thanks to all for the information. The more information and input I get, the better it helps me. Tom's matter of fact information was very good. Very grounding in everything. It's also nice to see Piper's input, as its amazing to see what can happen with CF. I could make some sort of joke about her being a lawyer as another bad symptom of CF if I could find a way to formulate the joke, but it honestly is really nice to see the successes those with CF can make in life.
 
 Already today they've added another drug to his daily routine. They want him to take Zantac three times a day. The pharmacy gave us a generic, but I remember reading we shouldn't be taking generics, so I'll have to ask. Maybe that is just the enzymes where the brand name is important?

The Sweet And The Sour...

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