Son has possible CF??????

Patrick

New member
My son was born april 2 2009, Went to Ped he did a heal test Called my wife yesterday May 14 2009. informed her that Dylan had tested positive. said he scored a 69 when normal is 60??????(still dont know what those numbers are for). Had a very long night of panic and tears. Started hitting the internet to find out more about CF. I have now calmed down and scheduled a sweat test at childrens hospital in Denver Colorado. I am still worried sick about the outcome holding on to the positive side that the screening is just a premptive hit to help determine if there is a problem. It is in gods hands and i am aware of that. But as I sit typing this I look at him and see nothing but a perfect little boy (fat and Happy) and like many other posters on this website he has no symtoms. I have only told the grandparents of the possible problem, I have figured there is no reason to get anyone else worried about it. So has anyone dealt with Childrens hospital Good Bad or indefferent? Also my Ped informed us that the screening tests are never 100 percent. Is this true or am I justing fooling myself. I am also heading in to get my blood sent off see what I have. The other unusual thing is I cant seem to Stop thinking that I did something wrong growing up (smoking drinking .etc.) I know they are not factors but I can not seem to wrap my head around it. Thanks for any incite you may have and of course prayers are always welcome. Also does anyone have a clue what the score of 69 means?
 

Patrick

New member
My son was born april 2 2009, Went to Ped he did a heal test Called my wife yesterday May 14 2009. informed her that Dylan had tested positive. said he scored a 69 when normal is 60??????(still dont know what those numbers are for). Had a very long night of panic and tears. Started hitting the internet to find out more about CF. I have now calmed down and scheduled a sweat test at childrens hospital in Denver Colorado. I am still worried sick about the outcome holding on to the positive side that the screening is just a premptive hit to help determine if there is a problem. It is in gods hands and i am aware of that. But as I sit typing this I look at him and see nothing but a perfect little boy (fat and Happy) and like many other posters on this website he has no symtoms. I have only told the grandparents of the possible problem, I have figured there is no reason to get anyone else worried about it. So has anyone dealt with Childrens hospital Good Bad or indefferent? Also my Ped informed us that the screening tests are never 100 percent. Is this true or am I justing fooling myself. I am also heading in to get my blood sent off see what I have. The other unusual thing is I cant seem to Stop thinking that I did something wrong growing up (smoking drinking .etc.) I know they are not factors but I can not seem to wrap my head around it. Thanks for any incite you may have and of course prayers are always welcome. Also does anyone have a clue what the score of 69 means?
 

Patrick

New member
My son was born april 2 2009, Went to Ped he did a heal test Called my wife yesterday May 14 2009. informed her that Dylan had tested positive. said he scored a 69 when normal is 60??????(still dont know what those numbers are for). Had a very long night of panic and tears. Started hitting the internet to find out more about CF. I have now calmed down and scheduled a sweat test at childrens hospital in Denver Colorado. I am still worried sick about the outcome holding on to the positive side that the screening is just a premptive hit to help determine if there is a problem. It is in gods hands and i am aware of that. But as I sit typing this I look at him and see nothing but a perfect little boy (fat and Happy) and like many other posters on this website he has no symtoms. I have only told the grandparents of the possible problem, I have figured there is no reason to get anyone else worried about it. So has anyone dealt with Childrens hospital Good Bad or indefferent? Also my Ped informed us that the screening tests are never 100 percent. Is this true or am I justing fooling myself. I am also heading in to get my blood sent off see what I have. The other unusual thing is I cant seem to Stop thinking that I did something wrong growing up (smoking drinking .etc.) I know they are not factors but I can not seem to wrap my head around it. Thanks for any incite you may have and of course prayers are always welcome. Also does anyone have a clue what the score of 69 means?
 

Patrick

New member
My son was born april 2 2009, Went to Ped he did a heal test Called my wife yesterday May 14 2009. informed her that Dylan had tested positive. said he scored a 69 when normal is 60??????(still dont know what those numbers are for). Had a very long night of panic and tears. Started hitting the internet to find out more about CF. I have now calmed down and scheduled a sweat test at childrens hospital in Denver Colorado. I am still worried sick about the outcome holding on to the positive side that the screening is just a premptive hit to help determine if there is a problem. It is in gods hands and i am aware of that. But as I sit typing this I look at him and see nothing but a perfect little boy (fat and Happy) and like many other posters on this website he has no symtoms. I have only told the grandparents of the possible problem, I have figured there is no reason to get anyone else worried about it. So has anyone dealt with Childrens hospital Good Bad or indefferent? Also my Ped informed us that the screening tests are never 100 percent. Is this true or am I justing fooling myself. I am also heading in to get my blood sent off see what I have. The other unusual thing is I cant seem to Stop thinking that I did something wrong growing up (smoking drinking .etc.) I know they are not factors but I can not seem to wrap my head around it. Thanks for any incite you may have and of course prayers are always welcome. Also does anyone have a clue what the score of 69 means?
 

Patrick

New member
My son was born april 2 2009, Went to Ped he did a heal test Called my wife yesterday May 14 2009. informed her that Dylan had tested positive. said he scored a 69 when normal is 60??????(still dont know what those numbers are for). Had a very long night of panic and tears. Started hitting the internet to find out more about CF. I have now calmed down and scheduled a sweat test at childrens hospital in Denver Colorado. I am still worried sick about the outcome holding on to the positive side that the screening is just a premptive hit to help determine if there is a problem. It is in gods hands and i am aware of that. But as I sit typing this I look at him and see nothing but a perfect little boy (fat and Happy) and like many other posters on this website he has no symtoms. I have only told the grandparents of the possible problem, I have figured there is no reason to get anyone else worried about it. So has anyone dealt with Childrens hospital Good Bad or indefferent? Also my Ped informed us that the screening tests are never 100 percent. Is this true or am I justing fooling myself. I am also heading in to get my blood sent off see what I have. The other unusual thing is I cant seem to Stop thinking that I did something wrong growing up (smoking drinking .etc.) I know they are not factors but I can not seem to wrap my head around it. Thanks for any incite you may have and of course prayers are always welcome. Also does anyone have a clue what the score of 69 means?
 

JazzysMom

New member
First of all Congratulations on the baby!

I dont know a lot about the newborn screeening except that it is just that a SCREEENING.

When something is elevated....it is recommended for further testing. It is also my understanding that a good % of babies that are referred after the newborn screening end up NOT having CF.

NOW there is no way to know which catergory your baby falls in, but we are here for any ???, venting or feedback that you may need.

We just ask that you let us know results one way or the other!

HUGS & Good Luck~
 

JazzysMom

New member
First of all Congratulations on the baby!

I dont know a lot about the newborn screeening except that it is just that a SCREEENING.

When something is elevated....it is recommended for further testing. It is also my understanding that a good % of babies that are referred after the newborn screening end up NOT having CF.

NOW there is no way to know which catergory your baby falls in, but we are here for any ???, venting or feedback that you may need.

We just ask that you let us know results one way or the other!

HUGS & Good Luck~
 

JazzysMom

New member
First of all Congratulations on the baby!

I dont know a lot about the newborn screeening except that it is just that a SCREEENING.

When something is elevated....it is recommended for further testing. It is also my understanding that a good % of babies that are referred after the newborn screening end up NOT having CF.

NOW there is no way to know which catergory your baby falls in, but we are here for any ???, venting or feedback that you may need.

We just ask that you let us know results one way or the other!

HUGS & Good Luck~
 

JazzysMom

New member
First of all Congratulations on the baby!

I dont know a lot about the newborn screeening except that it is just that a SCREEENING.

When something is elevated....it is recommended for further testing. It is also my understanding that a good % of babies that are referred after the newborn screening end up NOT having CF.

NOW there is no way to know which catergory your baby falls in, but we are here for any ???, venting or feedback that you may need.

We just ask that you let us know results one way or the other!

HUGS & Good Luck~
 

JazzysMom

New member
First of all Congratulations on the baby!
<br />
<br />I dont know a lot about the newborn screeening except that it is just that a SCREEENING.
<br />
<br />When something is elevated....it is recommended for further testing. It is also my understanding that a good % of babies that are referred after the newborn screening end up NOT having CF.
<br />
<br />NOW there is no way to know which catergory your baby falls in, but we are here for any ???, venting or feedback that you may need.
<br />
<br />We just ask that you let us know results one way or the other!
<br />
<br />HUGS & Good Luck~
 

Ratatosk

Administrator
Staff member
I have a friend who lives near Denver and her children have gone to the clinic there and RAVE about Dr. Arturu (sp). I'm sure your mind is racing with what ifs. We scoured our family's geneology records to see if there were any ancestors with CF and there weren't. Feel free to ask any questions. A lot of us have been where you've been in the past.
 

Ratatosk

Administrator
Staff member
I have a friend who lives near Denver and her children have gone to the clinic there and RAVE about Dr. Arturu (sp). I'm sure your mind is racing with what ifs. We scoured our family's geneology records to see if there were any ancestors with CF and there weren't. Feel free to ask any questions. A lot of us have been where you've been in the past.
 

Ratatosk

Administrator
Staff member
I have a friend who lives near Denver and her children have gone to the clinic there and RAVE about Dr. Arturu (sp). I'm sure your mind is racing with what ifs. We scoured our family's geneology records to see if there were any ancestors with CF and there weren't. Feel free to ask any questions. A lot of us have been where you've been in the past.
 

Ratatosk

Administrator
Staff member
I have a friend who lives near Denver and her children have gone to the clinic there and RAVE about Dr. Arturu (sp). I'm sure your mind is racing with what ifs. We scoured our family's geneology records to see if there were any ancestors with CF and there weren't. Feel free to ask any questions. A lot of us have been where you've been in the past.
 

Ratatosk

Administrator
Staff member
I have a friend who lives near Denver and her children have gone to the clinic there and RAVE about Dr. Arturu (sp). I'm sure your mind is racing with what ifs. We scoured our family's geneology records to see if there were any ancestors with CF and there weren't. Feel free to ask any questions. A lot of us have been where you've been in the past.
 

Patrick

New member
Upon some more looking I have found that the denver Childrens hospital is a great Place. So We have are appointment on May 26th at 0830. How long does it usually take to get the results back? I have also discovered that if i stay busy I do not seem to dwell on it so much. But I am still on paternal leave from work so its Honey Do time. (I Love Mowing....feel the wind in my hair Kinda like having a motorcycle again)
 

Patrick

New member
Upon some more looking I have found that the denver Childrens hospital is a great Place. So We have are appointment on May 26th at 0830. How long does it usually take to get the results back? I have also discovered that if i stay busy I do not seem to dwell on it so much. But I am still on paternal leave from work so its Honey Do time. (I Love Mowing....feel the wind in my hair Kinda like having a motorcycle again)
 

Patrick

New member
Upon some more looking I have found that the denver Childrens hospital is a great Place. So We have are appointment on May 26th at 0830. How long does it usually take to get the results back? I have also discovered that if i stay busy I do not seem to dwell on it so much. But I am still on paternal leave from work so its Honey Do time. (I Love Mowing....feel the wind in my hair Kinda like having a motorcycle again)
 

Patrick

New member
Upon some more looking I have found that the denver Childrens hospital is a great Place. So We have are appointment on May 26th at 0830. How long does it usually take to get the results back? I have also discovered that if i stay busy I do not seem to dwell on it so much. But I am still on paternal leave from work so its Honey Do time. (I Love Mowing....feel the wind in my hair Kinda like having a motorcycle again)
 

Patrick

New member
Upon some more looking I have found that the denver Childrens hospital is a great Place. So We have are appointment on May 26th at 0830. How long does it usually take to get the results back? I have also discovered that if i stay busy I do not seem to dwell on it so much. But I am still on paternal leave from work so its Honey Do time. (I Love Mowing....feel the wind in my hair Kinda like having a motorcycle again)
 
Top