Delta 508 Severity?

[shimmereestar]

Hi there,
I have an Ellie with DDF508 too. I have to ditto what everyone else says...each case is different. We did have a rough start because we had no idea she had CF. Once we received the diagnosis and knew what we were treating she has done wonderfully. Be proactive and aggressive with her treatments and love her to pieces<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[shimmereestar]

Hi there,
I have an Ellie with DDF508 too. I have to ditto what everyone else says...each case is different. We did have a rough start because we had no idea she had CF. Once we received the diagnosis and knew what we were treating she has done wonderfully. Be proactive and aggressive with her treatments and love her to pieces<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[shimmereestar]

Hi there,
I have an Ellie with DDF508 too. I have to ditto what everyone else says...each case is different. We did have a rough start because we had no idea she had CF. Once we received the diagnosis and knew what we were treating she has done wonderfully. Be proactive and aggressive with her treatments and love her to pieces<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[shimmereestar]

Hi there,
I have an Ellie with DDF508 too. I have to ditto what everyone else says...each case is different. We did have a rough start because we had no idea she had CF. Once we received the diagnosis and knew what we were treating she has done wonderfully. Be proactive and aggressive with her treatments and love her to pieces<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[shimmereestar]

Hi there,
<br />I have an Ellie with DDF508 too. I have to ditto what everyone else says...each case is different. We did have a rough start because we had no idea she had CF. Once we received the diagnosis and knew what we were treating she has done wonderfully. Be proactive and aggressive with her treatments and love her to pieces<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Sevenstars]

Each case is very different. Genes may indeed predict some things, to an extent, but a large portion is what you do for yourself. (or your child) So your best course of action is preventative, consistent treatments.

Look in the families section and you will see a enormous wealth of advice on what to do for kids with CF. Some parents tend to err on the side of caution and isolate their kids a lot (like mine!) but most here, I think, are very liberal. One mom just had a blog about sending both her boys (with cf) to summer camp, which is great in my opinion. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Congrats on your baby girl and welcome to the site.

 

[Sevenstars]

Each case is very different. Genes may indeed predict some things, to an extent, but a large portion is what you do for yourself. (or your child) So your best course of action is preventative, consistent treatments.

Look in the families section and you will see a enormous wealth of advice on what to do for kids with CF. Some parents tend to err on the side of caution and isolate their kids a lot (like mine!) but most here, I think, are very liberal. One mom just had a blog about sending both her boys (with cf) to summer camp, which is great in my opinion. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Congrats on your baby girl and welcome to the site.

 

[Sevenstars]

Each case is very different. Genes may indeed predict some things, to an extent, but a large portion is what you do for yourself. (or your child) So your best course of action is preventative, consistent treatments.

Look in the families section and you will see a enormous wealth of advice on what to do for kids with CF. Some parents tend to err on the side of caution and isolate their kids a lot (like mine!) but most here, I think, are very liberal. One mom just had a blog about sending both her boys (with cf) to summer camp, which is great in my opinion. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Congrats on your baby girl and welcome to the site.

 

[Sevenstars]

Each case is very different. Genes may indeed predict some things, to an extent, but a large portion is what you do for yourself. (or your child) So your best course of action is preventative, consistent treatments.

Look in the families section and you will see a enormous wealth of advice on what to do for kids with CF. Some parents tend to err on the side of caution and isolate their kids a lot (like mine!) but most here, I think, are very liberal. One mom just had a blog about sending both her boys (with cf) to summer camp, which is great in my opinion. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Congrats on your baby girl and welcome to the site.

 

[Sevenstars]

Each case is very different. Genes may indeed predict some things, to an extent, but a large portion is what you do for yourself. (or your child) So your best course of action is preventative, consistent treatments.
<br />
<br />Look in the families section and you will see a enormous wealth of advice on what to do for kids with CF. Some parents tend to err on the side of caution and isolate their kids a lot (like mine!) but most here, I think, are very liberal. One mom just had a blog about sending both her boys (with cf) to summer camp, which is great in my opinion. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Congrats on your baby girl and welcome to the site.

 

[kitomd21]

Thank you for your replies. It's difficult not to think about "isolating" Ellie...I keep telling myself that I can prevent her acquisition of pseudomonas if I'm careful enough. From what people have been telling me it seems that it would be impossible to prevent infection! So frustrating. I'm afraid of the day that she does get pseudomonas because I have infection linked to rapid deterioration in health. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[kitomd21]

Thank you for your replies. It's difficult not to think about "isolating" Ellie...I keep telling myself that I can prevent her acquisition of pseudomonas if I'm careful enough. From what people have been telling me it seems that it would be impossible to prevent infection! So frustrating. I'm afraid of the day that she does get pseudomonas because I have infection linked to rapid deterioration in health. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[kitomd21]

Thank you for your replies. It's difficult not to think about "isolating" Ellie...I keep telling myself that I can prevent her acquisition of pseudomonas if I'm careful enough. From what people have been telling me it seems that it would be impossible to prevent infection! So frustrating. I'm afraid of the day that she does get pseudomonas because I have infection linked to rapid deterioration in health. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[kitomd21]

Thank you for your replies. It's difficult not to think about "isolating" Ellie...I keep telling myself that I can prevent her acquisition of pseudomonas if I'm careful enough. From what people have been telling me it seems that it would be impossible to prevent infection! So frustrating. I'm afraid of the day that she does get pseudomonas because I have infection linked to rapid deterioration in health. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[kitomd21]

Thank you for your replies. It's difficult not to think about "isolating" Ellie...I keep telling myself that I can prevent her acquisition of pseudomonas if I'm careful enough. From what people have been telling me it seems that it would be impossible to prevent infection! So frustrating. I'm afraid of the day that she does get pseudomonas because I have infection linked to rapid deterioration in health. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[NYCLawGirl]

I have cultured PA since I was a very young child, and I'm now 26. I had very few health issues until my late teens and managed to go to both college and law school, and still am blessed enough to be able to work full time. I understand your fears (although, as a non-parent I know my understanding is limited - parents of us CFers totally deserve a medal), and you are absolutely right to take care to avoid any infection, but please don't think that an abnormal culture means rapid decline.

For what it's worth, a doctor once told my parents to take me home and love me "as long as you can." Good advice for any parent, and surprise...they're still loving me 26 years later! Your daughter is lucky to have such a proactive mother. Enjoy!

 

[NYCLawGirl]

I have cultured PA since I was a very young child, and I'm now 26. I had very few health issues until my late teens and managed to go to both college and law school, and still am blessed enough to be able to work full time. I understand your fears (although, as a non-parent I know my understanding is limited - parents of us CFers totally deserve a medal), and you are absolutely right to take care to avoid any infection, but please don't think that an abnormal culture means rapid decline.

For what it's worth, a doctor once told my parents to take me home and love me "as long as you can." Good advice for any parent, and surprise...they're still loving me 26 years later! Your daughter is lucky to have such a proactive mother. Enjoy!

 

[NYCLawGirl]

I have cultured PA since I was a very young child, and I'm now 26. I had very few health issues until my late teens and managed to go to both college and law school, and still am blessed enough to be able to work full time. I understand your fears (although, as a non-parent I know my understanding is limited - parents of us CFers totally deserve a medal), and you are absolutely right to take care to avoid any infection, but please don't think that an abnormal culture means rapid decline.

For what it's worth, a doctor once told my parents to take me home and love me "as long as you can." Good advice for any parent, and surprise...they're still loving me 26 years later! Your daughter is lucky to have such a proactive mother. Enjoy!

 

[NYCLawGirl]

I have cultured PA since I was a very young child, and I'm now 26. I had very few health issues until my late teens and managed to go to both college and law school, and still am blessed enough to be able to work full time. I understand your fears (although, as a non-parent I know my understanding is limited - parents of us CFers totally deserve a medal), and you are absolutely right to take care to avoid any infection, but please don't think that an abnormal culture means rapid decline.

For what it's worth, a doctor once told my parents to take me home and love me "as long as you can." Good advice for any parent, and surprise...they're still loving me 26 years later! Your daughter is lucky to have such a proactive mother. Enjoy!

 

[NYCLawGirl]

I have cultured PA since I was a very young child, and I'm now 26. I had very few health issues until my late teens and managed to go to both college and law school, and still am blessed enough to be able to work full time. I understand your fears (although, as a non-parent I know my understanding is limited - parents of us CFers totally deserve a medal), and you are absolutely right to take care to avoid any infection, but please don't think that an abnormal culture means rapid decline.
<br />
<br />For what it's worth, a doctor once told my parents to take me home and love me "as long as you can." Good advice for any parent, and surprise...they're still loving me 26 years later! Your daughter is lucky to have such a proactive mother. Enjoy!