I'm desperate for hope

[nlwlrandall]

Okay so I posted yesterday about my newborn baby girl being diagnosed with cf and her mutations are DeltaF508 and R117H. I understand that overall no one can be sure about how severe her case will be based on genes alone, but everywhere I have read the R117H mutation has been said to be less severe with pancreatic sufficiency...

So my question is... if one were to have a less severe case with not many symptoms or infections would that add years to one's life? Is it possible or even concieveable to live a full life and grow old with this disease?

Thank you for your time.
Laura

 

[nlwlrandall]

Okay so I posted yesterday about my newborn baby girl being diagnosed with cf and her mutations are DeltaF508 and R117H. I understand that overall no one can be sure about how severe her case will be based on genes alone, but everywhere I have read the R117H mutation has been said to be less severe with pancreatic sufficiency...

So my question is... if one were to have a less severe case with not many symptoms or infections would that add years to one's life? Is it possible or even concieveable to live a full life and grow old with this disease?

Thank you for your time.
Laura

 

[nlwlrandall]

Okay so I posted yesterday about my newborn baby girl being diagnosed with cf and her mutations are DeltaF508 and R117H. I understand that overall no one can be sure about how severe her case will be based on genes alone, but everywhere I have read the R117H mutation has been said to be less severe with pancreatic sufficiency...

So my question is... if one were to have a less severe case with not many symptoms or infections would that add years to one's life? Is it possible or even concieveable to live a full life and grow old with this disease?

Thank you for your time.
Laura

 

[nlwlrandall]

Okay so I posted yesterday about my newborn baby girl being diagnosed with cf and her mutations are DeltaF508 and R117H. I understand that overall no one can be sure about how severe her case will be based on genes alone, but everywhere I have read the R117H mutation has been said to be less severe with pancreatic sufficiency...

So my question is... if one were to have a less severe case with not many symptoms or infections would that add years to one's life? Is it possible or even concieveable to live a full life and grow old with this disease?

Thank you for your time.
Laura

 

[nlwlrandall]

Okay so I posted yesterday about my newborn baby girl being diagnosed with cf and her mutations are DeltaF508 and R117H. I understand that overall no one can be sure about how severe her case will be based on genes alone, but everywhere I have read the R117H mutation has been said to be less severe with pancreatic sufficiency...

So my question is... if one were to have a less severe case with not many symptoms or infections would that add years to one's life? Is it possible or even concieveable to live a full life and grow old with this disease?

Thank you for your time.
Laura

 

[JazzysMom]

ANYTHING is possible!

That being said please remember that the one thing with CF no matter what your mutations & what characteristics those mutations are associated with.....CF IS UNPREDICTABLE!

Mutations, compliance, environement, available meds & luck all play a part in it. The best info that I can offer you is to be hopeful without losing touch with reality.

Trying to get answers of the unknown future is always wise. I know you are looking for hope to cling to. The only thing I can say as an old timer is that you little one is soooo fortunate to have all the new meds currently available and in the pipeline at such a young age.

This is a big step versus it being available at an older age when the chances of permanent damage being done is greater.

HUGS to you & please, please enjoy yourself with your baby. I worry that you will stop living & just exist from the what ifs......

 

[JazzysMom]

ANYTHING is possible!

That being said please remember that the one thing with CF no matter what your mutations & what characteristics those mutations are associated with.....CF IS UNPREDICTABLE!

Mutations, compliance, environement, available meds & luck all play a part in it. The best info that I can offer you is to be hopeful without losing touch with reality.

Trying to get answers of the unknown future is always wise. I know you are looking for hope to cling to. The only thing I can say as an old timer is that you little one is soooo fortunate to have all the new meds currently available and in the pipeline at such a young age.

This is a big step versus it being available at an older age when the chances of permanent damage being done is greater.

HUGS to you & please, please enjoy yourself with your baby. I worry that you will stop living & just exist from the what ifs......

 

[JazzysMom]

ANYTHING is possible!

That being said please remember that the one thing with CF no matter what your mutations & what characteristics those mutations are associated with.....CF IS UNPREDICTABLE!

Mutations, compliance, environement, available meds & luck all play a part in it. The best info that I can offer you is to be hopeful without losing touch with reality.

Trying to get answers of the unknown future is always wise. I know you are looking for hope to cling to. The only thing I can say as an old timer is that you little one is soooo fortunate to have all the new meds currently available and in the pipeline at such a young age.

This is a big step versus it being available at an older age when the chances of permanent damage being done is greater.

HUGS to you & please, please enjoy yourself with your baby. I worry that you will stop living & just exist from the what ifs......

 

[JazzysMom]

ANYTHING is possible!

That being said please remember that the one thing with CF no matter what your mutations & what characteristics those mutations are associated with.....CF IS UNPREDICTABLE!

Mutations, compliance, environement, available meds & luck all play a part in it. The best info that I can offer you is to be hopeful without losing touch with reality.

Trying to get answers of the unknown future is always wise. I know you are looking for hope to cling to. The only thing I can say as an old timer is that you little one is soooo fortunate to have all the new meds currently available and in the pipeline at such a young age.

This is a big step versus it being available at an older age when the chances of permanent damage being done is greater.

HUGS to you & please, please enjoy yourself with your baby. I worry that you will stop living & just exist from the what ifs......

 

[JazzysMom]

ANYTHING is possible!

That being said please remember that the one thing with CF no matter what your mutations & what characteristics those mutations are associated with.....CF IS UNPREDICTABLE!

Mutations, compliance, environement, available meds & luck all play a part in it. The best info that I can offer you is to be hopeful without losing touch with reality.

Trying to get answers of the unknown future is always wise. I know you are looking for hope to cling to. The only thing I can say as an old timer is that you little one is soooo fortunate to have all the new meds currently available and in the pipeline at such a young age.

This is a big step versus it being available at an older age when the chances of permanent damage being done is greater.

HUGS to you & please, please enjoy yourself with your baby. I worry that you will stop living & just exist from the what ifs......

 

[Alyssa]

I just posted on your other post too - it's pretty long so please read it too for a lot of details.

But I agree with Melissa's statement YES anything is possible.

And like I said in my other post, all disclaimers aside (I'm sure you've already been informed) I think it is very possible to draw some conclusions to the evidence out there about having a class 4 mutation, with pancreatic sufficiency will help you child to remain healthier, longer, than others with more "classic" presentation of CF.

At the time of diagnosis, our doctor informed us that we would not find a lot of long term information about the health of patience with this gene because they tend to be more on the mild side, most have been misdiagnosed and/or undiagnosed for years and their clinical information is not as well represented.

Knowing what her genes are is beneficial. There are many people who will disagree with me for various reasons and I know that each of us are correct to a certain degree in our arguments, but I think that yes, you can draw some crude or basic conclusions from the information available about what gene mutations "might" or are "likely" to cause or not cause. I think most all doctors will tell you that the R117H gene is one of the better genes to have since it is associated with pancreatic sufficiency and more mild lung involvement.

Is that a guarantee of anything? No.

Can anyone tell you for sure how your daughters disease will progress? No again.

<i>Can you draw some basic conclusions as to what is more likely to happen?</i> Can you hope for the best possible outcome? Yes, I believe so.

Educate yourself, provide the best environment for her you can (smoke free home etc), go to clinic appointments every three months, do the preventative treatments, keep her physically active (sports, musical instruments - things that work the lungs) and hope for the best !

 

[Alyssa]

I just posted on your other post too - it's pretty long so please read it too for a lot of details.

But I agree with Melissa's statement YES anything is possible.

And like I said in my other post, all disclaimers aside (I'm sure you've already been informed) I think it is very possible to draw some conclusions to the evidence out there about having a class 4 mutation, with pancreatic sufficiency will help you child to remain healthier, longer, than others with more "classic" presentation of CF.

At the time of diagnosis, our doctor informed us that we would not find a lot of long term information about the health of patience with this gene because they tend to be more on the mild side, most have been misdiagnosed and/or undiagnosed for years and their clinical information is not as well represented.

Knowing what her genes are is beneficial. There are many people who will disagree with me for various reasons and I know that each of us are correct to a certain degree in our arguments, but I think that yes, you can draw some crude or basic conclusions from the information available about what gene mutations "might" or are "likely" to cause or not cause. I think most all doctors will tell you that the R117H gene is one of the better genes to have since it is associated with pancreatic sufficiency and more mild lung involvement.

Is that a guarantee of anything? No.

Can anyone tell you for sure how your daughters disease will progress? No again.

<i>Can you draw some basic conclusions as to what is more likely to happen?</i> Can you hope for the best possible outcome? Yes, I believe so.

Educate yourself, provide the best environment for her you can (smoke free home etc), go to clinic appointments every three months, do the preventative treatments, keep her physically active (sports, musical instruments - things that work the lungs) and hope for the best !

 

[Alyssa]

I just posted on your other post too - it's pretty long so please read it too for a lot of details.

But I agree with Melissa's statement YES anything is possible.

And like I said in my other post, all disclaimers aside (I'm sure you've already been informed) I think it is very possible to draw some conclusions to the evidence out there about having a class 4 mutation, with pancreatic sufficiency will help you child to remain healthier, longer, than others with more "classic" presentation of CF.

At the time of diagnosis, our doctor informed us that we would not find a lot of long term information about the health of patience with this gene because they tend to be more on the mild side, most have been misdiagnosed and/or undiagnosed for years and their clinical information is not as well represented.

Knowing what her genes are is beneficial. There are many people who will disagree with me for various reasons and I know that each of us are correct to a certain degree in our arguments, but I think that yes, you can draw some crude or basic conclusions from the information available about what gene mutations "might" or are "likely" to cause or not cause. I think most all doctors will tell you that the R117H gene is one of the better genes to have since it is associated with pancreatic sufficiency and more mild lung involvement.

Is that a guarantee of anything? No.

Can anyone tell you for sure how your daughters disease will progress? No again.

<i>Can you draw some basic conclusions as to what is more likely to happen?</i> Can you hope for the best possible outcome? Yes, I believe so.

Educate yourself, provide the best environment for her you can (smoke free home etc), go to clinic appointments every three months, do the preventative treatments, keep her physically active (sports, musical instruments - things that work the lungs) and hope for the best !

 

[Alyssa]

I just posted on your other post too - it's pretty long so please read it too for a lot of details.

But I agree with Melissa's statement YES anything is possible.

And like I said in my other post, all disclaimers aside (I'm sure you've already been informed) I think it is very possible to draw some conclusions to the evidence out there about having a class 4 mutation, with pancreatic sufficiency will help you child to remain healthier, longer, than others with more "classic" presentation of CF.

At the time of diagnosis, our doctor informed us that we would not find a lot of long term information about the health of patience with this gene because they tend to be more on the mild side, most have been misdiagnosed and/or undiagnosed for years and their clinical information is not as well represented.

Knowing what her genes are is beneficial. There are many people who will disagree with me for various reasons and I know that each of us are correct to a certain degree in our arguments, but I think that yes, you can draw some crude or basic conclusions from the information available about what gene mutations "might" or are "likely" to cause or not cause. I think most all doctors will tell you that the R117H gene is one of the better genes to have since it is associated with pancreatic sufficiency and more mild lung involvement.

Is that a guarantee of anything? No.

Can anyone tell you for sure how your daughters disease will progress? No again.

<i>Can you draw some basic conclusions as to what is more likely to happen?</i> Can you hope for the best possible outcome? Yes, I believe so.

Educate yourself, provide the best environment for her you can (smoke free home etc), go to clinic appointments every three months, do the preventative treatments, keep her physically active (sports, musical instruments - things that work the lungs) and hope for the best !

 

[Alyssa]

I just posted on your other post too - it's pretty long so please read it too for a lot of details.

But I agree with Melissa's statement YES anything is possible.

And like I said in my other post, all disclaimers aside (I'm sure you've already been informed) I think it is very possible to draw some conclusions to the evidence out there about having a class 4 mutation, with pancreatic sufficiency will help you child to remain healthier, longer, than others with more "classic" presentation of CF.

At the time of diagnosis, our doctor informed us that we would not find a lot of long term information about the health of patience with this gene because they tend to be more on the mild side, most have been misdiagnosed and/or undiagnosed for years and their clinical information is not as well represented.

Knowing what her genes are is beneficial. There are many people who will disagree with me for various reasons and I know that each of us are correct to a certain degree in our arguments, but I think that yes, you can draw some crude or basic conclusions from the information available about what gene mutations "might" or are "likely" to cause or not cause. I think most all doctors will tell you that the R117H gene is one of the better genes to have since it is associated with pancreatic sufficiency and more mild lung involvement.

Is that a guarantee of anything? No.

Can anyone tell you for sure how your daughters disease will progress? No again.

<i>Can you draw some basic conclusions as to what is more likely to happen?</i> Can you hope for the best possible outcome? Yes, I believe so.

Educate yourself, provide the best environment for her you can (smoke free home etc), go to clinic appointments every three months, do the preventative treatments, keep her physically active (sports, musical instruments - things that work the lungs) and hope for the best !

 

[bittyhorse23]

Welcome to the site and you are in good hands here. There are so many great peopel willing to talk and share stories and ideas that you will NEVER feel alone!

I agree with the above posts about anything is possible. You have to have faith and hope that she will live long and be as healthy as possible. I don't know much about the mutations, so as for that I can not offer any advice. I can say though that this early of a diagnosis is great! She can be treated from the start and have a good chance at living life normally. There are so many adults on the site that have families, careers, and relatively normal lives. Raise her to know that she can do ANYTHING that she wants and she will. She will be determined to outlive you and she may surprise you and do so! Try not to worry so much about the future right now. Just enjoy the new blessing in your life and cherish her <img src="i/expressions/face-icon-small-smile.gif" border="0">

HUGS!!!

 

[bittyhorse23]

Welcome to the site and you are in good hands here. There are so many great peopel willing to talk and share stories and ideas that you will NEVER feel alone!

I agree with the above posts about anything is possible. You have to have faith and hope that she will live long and be as healthy as possible. I don't know much about the mutations, so as for that I can not offer any advice. I can say though that this early of a diagnosis is great! She can be treated from the start and have a good chance at living life normally. There are so many adults on the site that have families, careers, and relatively normal lives. Raise her to know that she can do ANYTHING that she wants and she will. She will be determined to outlive you and she may surprise you and do so! Try not to worry so much about the future right now. Just enjoy the new blessing in your life and cherish her <img src="i/expressions/face-icon-small-smile.gif" border="0">

HUGS!!!

 

[bittyhorse23]

Welcome to the site and you are in good hands here. There are so many great peopel willing to talk and share stories and ideas that you will NEVER feel alone!

I agree with the above posts about anything is possible. You have to have faith and hope that she will live long and be as healthy as possible. I don't know much about the mutations, so as for that I can not offer any advice. I can say though that this early of a diagnosis is great! She can be treated from the start and have a good chance at living life normally. There are so many adults on the site that have families, careers, and relatively normal lives. Raise her to know that she can do ANYTHING that she wants and she will. She will be determined to outlive you and she may surprise you and do so! Try not to worry so much about the future right now. Just enjoy the new blessing in your life and cherish her <img src="i/expressions/face-icon-small-smile.gif" border="0">

HUGS!!!

 

[bittyhorse23]

Welcome to the site and you are in good hands here. There are so many great peopel willing to talk and share stories and ideas that you will NEVER feel alone!

I agree with the above posts about anything is possible. You have to have faith and hope that she will live long and be as healthy as possible. I don't know much about the mutations, so as for that I can not offer any advice. I can say though that this early of a diagnosis is great! She can be treated from the start and have a good chance at living life normally. There are so many adults on the site that have families, careers, and relatively normal lives. Raise her to know that she can do ANYTHING that she wants and she will. She will be determined to outlive you and she may surprise you and do so! Try not to worry so much about the future right now. Just enjoy the new blessing in your life and cherish her <img src="i/expressions/face-icon-small-smile.gif" border="0">

HUGS!!!

 

[bittyhorse23]

Welcome to the site and you are in good hands here. There are so many great peopel willing to talk and share stories and ideas that you will NEVER feel alone!

I agree with the above posts about anything is possible. You have to have faith and hope that she will live long and be as healthy as possible. I don't know much about the mutations, so as for that I can not offer any advice. I can say though that this early of a diagnosis is great! She can be treated from the start and have a good chance at living life normally. There are so many adults on the site that have families, careers, and relatively normal lives. Raise her to know that she can do ANYTHING that she wants and she will. She will be determined to outlive you and she may surprise you and do so! Try not to worry so much about the future right now. Just enjoy the new blessing in your life and cherish her <img src="i/expressions/face-icon-small-smile.gif" border="0">

HUGS!!!