Been daydreaming about my son's future...

spacemom

New member
Thanks for all the input! The issue is much clearer for me now!

Thanks to Claudette and Lauren for clarifying about the <b>median </b>of 36.8 not life expectancy as I had wrongly assumed! And for explaining the difference between median and average, which I should remember from my 7th grade daughter's math classes which I was helping her with <img src="i/expressions/face-icon-small-smile.gif" border="0"> not from my own classes 35 or 40 years ago (ouch!!) <img src="i/expressions/face-icon-small-smile.gif" border="0">

Also thanks rvm for the interesting Barcelona study, and everybody for sharing your own and chidren's experience about the exact use of "mild".

many thanks Diane, Lynda and Nicole for alerting me to the importance of steering clear of bugs even if I have to wipe everything out myself, and how it's fundamental to stick to the medications. I'll be sure to pass all that info to my son, who sometimes moans and groans about all the stuff he has to inhale and swallow... but he has to know how vital that is.

THANKS A MILLION from the both of us and best of luck to you all!!!!
 

spacemom

New member
Thanks for all the input! The issue is much clearer for me now!

Thanks to Claudette and Lauren for clarifying about the <b>median </b>of 36.8 not life expectancy as I had wrongly assumed! And for explaining the difference between median and average, which I should remember from my 7th grade daughter's math classes which I was helping her with <img src="i/expressions/face-icon-small-smile.gif" border="0"> not from my own classes 35 or 40 years ago (ouch!!) <img src="i/expressions/face-icon-small-smile.gif" border="0">

Also thanks rvm for the interesting Barcelona study, and everybody for sharing your own and chidren's experience about the exact use of "mild".

many thanks Diane, Lynda and Nicole for alerting me to the importance of steering clear of bugs even if I have to wipe everything out myself, and how it's fundamental to stick to the medications. I'll be sure to pass all that info to my son, who sometimes moans and groans about all the stuff he has to inhale and swallow... but he has to know how vital that is.

THANKS A MILLION from the both of us and best of luck to you all!!!!
 

spacemom

New member
Thanks for all the input! The issue is much clearer for me now!

Thanks to Claudette and Lauren for clarifying about the <b>median </b>of 36.8 not life expectancy as I had wrongly assumed! And for explaining the difference between median and average, which I should remember from my 7th grade daughter's math classes which I was helping her with <img src="i/expressions/face-icon-small-smile.gif" border="0"> not from my own classes 35 or 40 years ago (ouch!!) <img src="i/expressions/face-icon-small-smile.gif" border="0">

Also thanks rvm for the interesting Barcelona study, and everybody for sharing your own and chidren's experience about the exact use of "mild".

many thanks Diane, Lynda and Nicole for alerting me to the importance of steering clear of bugs even if I have to wipe everything out myself, and how it's fundamental to stick to the medications. I'll be sure to pass all that info to my son, who sometimes moans and groans about all the stuff he has to inhale and swallow... but he has to know how vital that is.

THANKS A MILLION from the both of us and best of luck to you all!!!!
 

spacemom

New member
Thanks for all the input! The issue is much clearer for me now!

Thanks to Claudette and Lauren for clarifying about the <b>median </b>of 36.8 not life expectancy as I had wrongly assumed! And for explaining the difference between median and average, which I should remember from my 7th grade daughter's math classes which I was helping her with <img src="i/expressions/face-icon-small-smile.gif" border="0"> not from my own classes 35 or 40 years ago (ouch!!) <img src="i/expressions/face-icon-small-smile.gif" border="0">

Also thanks rvm for the interesting Barcelona study, and everybody for sharing your own and chidren's experience about the exact use of "mild".

many thanks Diane, Lynda and Nicole for alerting me to the importance of steering clear of bugs even if I have to wipe everything out myself, and how it's fundamental to stick to the medications. I'll be sure to pass all that info to my son, who sometimes moans and groans about all the stuff he has to inhale and swallow... but he has to know how vital that is.

THANKS A MILLION from the both of us and best of luck to you all!!!!
 

okok

New member
I just want to add that while sakasuka is correct that there is no genotype-phenotyple correlations for the delf508 allele (ie the mutation does not predict disease outcome or severity as it relates to lung health) this is not necessarily true for every CFTR mutation. There are some mutations which do have genotype/phenotype correlations. HOWEVER even in these cases i think it is important to recognize that your child is a unique individual and won't necessarily follow a predicted course. If your child has mutation/s other than delf508 it couldn't hurt to talk to a knowledgable CF doc or genetic counselor about whether or not there are any known genotype/phenotype correlations associated with his mutaion/s as long as you recognize that that your child is unique and may differ from others sharing his mutation.
 

okok

New member
I just want to add that while sakasuka is correct that there is no genotype-phenotyple correlations for the delf508 allele (ie the mutation does not predict disease outcome or severity as it relates to lung health) this is not necessarily true for every CFTR mutation. There are some mutations which do have genotype/phenotype correlations. HOWEVER even in these cases i think it is important to recognize that your child is a unique individual and won't necessarily follow a predicted course. If your child has mutation/s other than delf508 it couldn't hurt to talk to a knowledgable CF doc or genetic counselor about whether or not there are any known genotype/phenotype correlations associated with his mutaion/s as long as you recognize that that your child is unique and may differ from others sharing his mutation.
 

okok

New member
I just want to add that while sakasuka is correct that there is no genotype-phenotyple correlations for the delf508 allele (ie the mutation does not predict disease outcome or severity as it relates to lung health) this is not necessarily true for every CFTR mutation. There are some mutations which do have genotype/phenotype correlations. HOWEVER even in these cases i think it is important to recognize that your child is a unique individual and won't necessarily follow a predicted course. If your child has mutation/s other than delf508 it couldn't hurt to talk to a knowledgable CF doc or genetic counselor about whether or not there are any known genotype/phenotype correlations associated with his mutaion/s as long as you recognize that that your child is unique and may differ from others sharing his mutation.
 

okok

New member
I just want to add that while sakasuka is correct that there is no genotype-phenotyple correlations for the delf508 allele (ie the mutation does not predict disease outcome or severity as it relates to lung health) this is not necessarily true for every CFTR mutation. There are some mutations which do have genotype/phenotype correlations. HOWEVER even in these cases i think it is important to recognize that your child is a unique individual and won't necessarily follow a predicted course. If your child has mutation/s other than delf508 it couldn't hurt to talk to a knowledgable CF doc or genetic counselor about whether or not there are any known genotype/phenotype correlations associated with his mutaion/s as long as you recognize that that your child is unique and may differ from others sharing his mutation.
 

okok

New member
I just want to add that while sakasuka is correct that there is no genotype-phenotyple correlations for the delf508 allele (ie the mutation does not predict disease outcome or severity as it relates to lung health) this is not necessarily true for every CFTR mutation. There are some mutations which do have genotype/phenotype correlations. HOWEVER even in these cases i think it is important to recognize that your child is a unique individual and won't necessarily follow a predicted course. If your child has mutation/s other than delf508 it couldn't hurt to talk to a knowledgable CF doc or genetic counselor about whether or not there are any known genotype/phenotype correlations associated with his mutaion/s as long as you recognize that that your child is unique and may differ from others sharing his mutation.
 

okok

New member
I just want to add that while sakasuka is correct that there is no genotype-phenotyple correlations for the delf508 allele (ie the mutation does not predict disease outcome or severity as it relates to lung health) this is not necessarily true for every CFTR mutation. There are some mutations which do have genotype/phenotype correlations. HOWEVER even in these cases i think it is important to recognize that your child is a unique individual and won't necessarily follow a predicted course. If your child has mutation/s other than delf508 it couldn't hurt to talk to a knowledgable CF doc or genetic counselor about whether or not there are any known genotype/phenotype correlations associated with his mutaion/s as long as you recognize that that your child is unique and may differ from others sharing his mutation.
 
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