Not sure about results...

wielis82204 · Apr 30, 2008

Hi...Our son who is 2 1/2 had to have a sweat test this past friday. His results came back at 51. The facility he was tested at only do about 2 per year and they are not certified by CFF. Now his doc had him tested for the CF screen which was done on monday. We have only been communicating by phone and we are finally going to meet with the doc on thursday morning and hopefully get some answers to my 1 million plus questions. This is really hard for us to take at the moment. Our sons symptoms are 2 diagnosis of Pneumonia, loose stolls for a while, no weight gain or height growth since July. (He actually gained 2 lbs, but that is all). We thought he was just a little guy since height on my wife's side is in short supply - no tall people on her side of the family. Our son has been sick pretty much repeatedly for a while now and we are just searching for answers. This is absolutley just devistating news to us if he does come back positive for a mutation. And if he comes back negative, i still am going to ask the he gets tested for the full 1500 mutations. We are trying to educate ourselves as much as possible. It is a bit overwhelming. I know my wife is taking it very hard, especially since when she was first married she had passed down a genetic heart condition that cost her first born child to pass away at 28 days. She is just kicking herself really hard right now thinking that she passed down another disease that can take away another child. And all of this started happening with our son shortly after my dad passed away in february. So 2008 has really been a stinker for us. We just want to be able to get the correct treatments for our son, make him healthy, and do what ever it takes to make sure that he can have the best life possible. If any of you can offer us some advice, we certainly can use it. I want to thank all of you for taking the time to read this. May god bless all of you and your families.

wielis82204 · Apr 30, 2008

Hi...Our son who is 2 1/2 had to have a sweat test this past friday. His results came back at 51. The facility he was tested at only do about 2 per year and they are not certified by CFF. Now his doc had him tested for the CF screen which was done on monday. We have only been communicating by phone and we are finally going to meet with the doc on thursday morning and hopefully get some answers to my 1 million plus questions. This is really hard for us to take at the moment. Our sons symptoms are 2 diagnosis of Pneumonia, loose stolls for a while, no weight gain or height growth since July. (He actually gained 2 lbs, but that is all). We thought he was just a little guy since height on my wife's side is in short supply - no tall people on her side of the family. Our son has been sick pretty much repeatedly for a while now and we are just searching for answers. This is absolutley just devistating news to us if he does come back positive for a mutation. And if he comes back negative, i still am going to ask the he gets tested for the full 1500 mutations. We are trying to educate ourselves as much as possible. It is a bit overwhelming. I know my wife is taking it very hard, especially since when she was first married she had passed down a genetic heart condition that cost her first born child to pass away at 28 days. She is just kicking herself really hard right now thinking that she passed down another disease that can take away another child. And all of this started happening with our son shortly after my dad passed away in february. So 2008 has really been a stinker for us. We just want to be able to get the correct treatments for our son, make him healthy, and do what ever it takes to make sure that he can have the best life possible. If any of you can offer us some advice, we certainly can use it. I want to thank all of you for taking the time to read this. May god bless all of you and your families.

wielis82204 · Apr 30, 2008

Hi...Our son who is 2 1/2 had to have a sweat test this past friday. His results came back at 51. The facility he was tested at only do about 2 per year and they are not certified by CFF. Now his doc had him tested for the CF screen which was done on monday. We have only been communicating by phone and we are finally going to meet with the doc on thursday morning and hopefully get some answers to my 1 million plus questions. This is really hard for us to take at the moment. Our sons symptoms are 2 diagnosis of Pneumonia, loose stolls for a while, no weight gain or height growth since July. (He actually gained 2 lbs, but that is all). We thought he was just a little guy since height on my wife's side is in short supply - no tall people on her side of the family. Our son has been sick pretty much repeatedly for a while now and we are just searching for answers. This is absolutley just devistating news to us if he does come back positive for a mutation. And if he comes back negative, i still am going to ask the he gets tested for the full 1500 mutations. We are trying to educate ourselves as much as possible. It is a bit overwhelming. I know my wife is taking it very hard, especially since when she was first married she had passed down a genetic heart condition that cost her first born child to pass away at 28 days. She is just kicking herself really hard right now thinking that she passed down another disease that can take away another child. And all of this started happening with our son shortly after my dad passed away in february. So 2008 has really been a stinker for us. We just want to be able to get the correct treatments for our son, make him healthy, and do what ever it takes to make sure that he can have the best life possible. If any of you can offer us some advice, we certainly can use it. I want to thank all of you for taking the time to read this. May god bless all of you and your families.

wielis82204 · Apr 30, 2008

Hi...Our son who is 2 1/2 had to have a sweat test this past friday. His results came back at 51. The facility he was tested at only do about 2 per year and they are not certified by CFF. Now his doc had him tested for the CF screen which was done on monday. We have only been communicating by phone and we are finally going to meet with the doc on thursday morning and hopefully get some answers to my 1 million plus questions. This is really hard for us to take at the moment. Our sons symptoms are 2 diagnosis of Pneumonia, loose stolls for a while, no weight gain or height growth since July. (He actually gained 2 lbs, but that is all). We thought he was just a little guy since height on my wife's side is in short supply - no tall people on her side of the family. Our son has been sick pretty much repeatedly for a while now and we are just searching for answers. This is absolutley just devistating news to us if he does come back positive for a mutation. And if he comes back negative, i still am going to ask the he gets tested for the full 1500 mutations. We are trying to educate ourselves as much as possible. It is a bit overwhelming. I know my wife is taking it very hard, especially since when she was first married she had passed down a genetic heart condition that cost her first born child to pass away at 28 days. She is just kicking herself really hard right now thinking that she passed down another disease that can take away another child. And all of this started happening with our son shortly after my dad passed away in february. So 2008 has really been a stinker for us. We just want to be able to get the correct treatments for our son, make him healthy, and do what ever it takes to make sure that he can have the best life possible. If any of you can offer us some advice, we certainly can use it. I want to thank all of you for taking the time to read this. May god bless all of you and your families.

wielis82204 · Apr 30, 2008

Hi...Our son who is 2 1/2 had to have a sweat test this past friday. His results came back at 51. The facility he was tested at only do about 2 per year and they are not certified by CFF. Now his doc had him tested for the CF screen which was done on monday. We have only been communicating by phone and we are finally going to meet with the doc on thursday morning and hopefully get some answers to my 1 million plus questions. This is really hard for us to take at the moment. Our sons symptoms are 2 diagnosis of Pneumonia, loose stolls for a while, no weight gain or height growth since July. (He actually gained 2 lbs, but that is all). We thought he was just a little guy since height on my wife's side is in short supply - no tall people on her side of the family. Our son has been sick pretty much repeatedly for a while now and we are just searching for answers. This is absolutley just devistating news to us if he does come back positive for a mutation. And if he comes back negative, i still am going to ask the he gets tested for the full 1500 mutations. We are trying to educate ourselves as much as possible. It is a bit overwhelming. I know my wife is taking it very hard, especially since when she was first married she had passed down a genetic heart condition that cost her first born child to pass away at 28 days. She is just kicking herself really hard right now thinking that she passed down another disease that can take away another child. And all of this started happening with our son shortly after my dad passed away in february. So 2008 has really been a stinker for us. We just want to be able to get the correct treatments for our son, make him healthy, and do what ever it takes to make sure that he can have the best life possible. If any of you can offer us some advice, we certainly can use it. I want to thank all of you for taking the time to read this. May god bless all of you and your families.

JazzysMom · Apr 30, 2008

It sounds like your 2008 really stinks so far.

That being said....no matter what the outcome of your child's testing, we will help you make it better!

I completely understand the devistation your wife feels. Most CF diagnosis have no family history so she really is beating herself up over something that she couldnt control.

It sounds like you are on the right track & understand how things work with the testing.

Just taking one step at a time is the best advice I can give at the moment. Its easier said then done I realize.

IF it is confirmed that your child has CF then starting the treatments ASAP is crucial. Although it is a serious disease & the median age is still too young IMHO....your child has a chance at a long & joyful life!

HUGS & please keep us updated or return with more ???

JazzysMom · Apr 30, 2008

It sounds like your 2008 really stinks so far.

That being said....no matter what the outcome of your child's testing, we will help you make it better!

I completely understand the devistation your wife feels. Most CF diagnosis have no family history so she really is beating herself up over something that she couldnt control.

It sounds like you are on the right track & understand how things work with the testing.

Just taking one step at a time is the best advice I can give at the moment. Its easier said then done I realize.

IF it is confirmed that your child has CF then starting the treatments ASAP is crucial. Although it is a serious disease & the median age is still too young IMHO....your child has a chance at a long & joyful life!

HUGS & please keep us updated or return with more ???

JazzysMom · Apr 30, 2008

It sounds like your 2008 really stinks so far.

That being said....no matter what the outcome of your child's testing, we will help you make it better!

I completely understand the devistation your wife feels. Most CF diagnosis have no family history so she really is beating herself up over something that she couldnt control.

It sounds like you are on the right track & understand how things work with the testing.

Just taking one step at a time is the best advice I can give at the moment. Its easier said then done I realize.

IF it is confirmed that your child has CF then starting the treatments ASAP is crucial. Although it is a serious disease & the median age is still too young IMHO....your child has a chance at a long & joyful life!

HUGS & please keep us updated or return with more ???

JazzysMom · Apr 30, 2008

It sounds like your 2008 really stinks so far.

That being said....no matter what the outcome of your child's testing, we will help you make it better!

I completely understand the devistation your wife feels. Most CF diagnosis have no family history so she really is beating herself up over something that she couldnt control.

It sounds like you are on the right track & understand how things work with the testing.

Just taking one step at a time is the best advice I can give at the moment. Its easier said then done I realize.

IF it is confirmed that your child has CF then starting the treatments ASAP is crucial. Although it is a serious disease & the median age is still too young IMHO....your child has a chance at a long & joyful life!

HUGS & please keep us updated or return with more ???

JazzysMom · Apr 30, 2008

It sounds like your 2008 really stinks so far.
 
 That being said....no matter what the outcome of your child's testing, we will help you make it better!
 
 I completely understand the devistation your wife feels. Most CF diagnosis have no family history so she really is beating herself up over something that she couldnt control.
 
 It sounds like you are on the right track & understand how things work with the testing.
 
 Just taking one step at a time is the best advice I can give at the moment. Its easier said then done I realize.
 
 IF it is confirmed that your child has CF then starting the treatments ASAP is crucial. Although it is a serious disease & the median age is still too young IMHO....your child has a chance at a long & joyful life!
 
 HUGS & please keep us updated or return with more ???

JORDYSMOM · Apr 30, 2008

I'm just so sorry you guys are having such a rough time. I can completely understand your wife's feelings of guilt. I felt the same, even though I know that I had no control over what genes did what at the time of my son's conception. It's just something we mom's seem to do to ourselves. We feel guilty for everything!

It sounds like you have done your homework on CF. Testing for all know mutations is VERY important. I don't think you can rule it out until you've looked for ALL of them. I know you don't want to receive the diagnosis, but if you do, there are many things you can do to improve your child's quality of life. Getting the proper treatments will make a big difference.

I wish you the best. Please keep us posted.

Stacey

JORDYSMOM · Apr 30, 2008

I'm just so sorry you guys are having such a rough time. I can completely understand your wife's feelings of guilt. I felt the same, even though I know that I had no control over what genes did what at the time of my son's conception. It's just something we mom's seem to do to ourselves. We feel guilty for everything!

It sounds like you have done your homework on CF. Testing for all know mutations is VERY important. I don't think you can rule it out until you've looked for ALL of them. I know you don't want to receive the diagnosis, but if you do, there are many things you can do to improve your child's quality of life. Getting the proper treatments will make a big difference.

I wish you the best. Please keep us posted.

Stacey

JORDYSMOM · Apr 30, 2008

I'm just so sorry you guys are having such a rough time. I can completely understand your wife's feelings of guilt. I felt the same, even though I know that I had no control over what genes did what at the time of my son's conception. It's just something we mom's seem to do to ourselves. We feel guilty for everything!

It sounds like you have done your homework on CF. Testing for all know mutations is VERY important. I don't think you can rule it out until you've looked for ALL of them. I know you don't want to receive the diagnosis, but if you do, there are many things you can do to improve your child's quality of life. Getting the proper treatments will make a big difference.

I wish you the best. Please keep us posted.

Stacey

JORDYSMOM · Apr 30, 2008

I'm just so sorry you guys are having such a rough time. I can completely understand your wife's feelings of guilt. I felt the same, even though I know that I had no control over what genes did what at the time of my son's conception. It's just something we mom's seem to do to ourselves. We feel guilty for everything!

It sounds like you have done your homework on CF. Testing for all know mutations is VERY important. I don't think you can rule it out until you've looked for ALL of them. I know you don't want to receive the diagnosis, but if you do, there are many things you can do to improve your child's quality of life. Getting the proper treatments will make a big difference.

I wish you the best. Please keep us posted.

Stacey

JORDYSMOM · Apr 30, 2008

I'm just so sorry you guys are having such a rough time. I can completely understand your wife's feelings of guilt. I felt the same, even though I know that I had no control over what genes did what at the time of my son's conception. It's just something we mom's seem to do to ourselves. We feel guilty for everything!
 
 It sounds like you have done your homework on CF. Testing for all know mutations is VERY important. I don't think you can rule it out until you've looked for ALL of them. I know you don't want to receive the diagnosis, but if you do, there are many things you can do to improve your child's quality of life. Getting the proper treatments will make a big difference.
 
 I wish you the best. Please keep us posted.
 
 Stacey

shimmereestar · Apr 30, 2008