Not sure about results...

Mommafirst · Apr 30, 2008

Welcome. I'm so sorry to hear all the things you've been dealing with. You sound like you have a great deal of information already, that's awesome.

I really wish that sweat tests would be completely unavailable at non-accredited centers. That 51 doesn't count for much when the level of accuracy is so questionned. At least you will get genetic testing and get concrete answers, as opposed to those that got "normal" scores and went on their way without being told that the numbers could of been wrong at an unaccredited center.

My daughter is the same age as your son. it was a devestating blow to get her diagnosis, but I do beleive that knowing and coping is much esier than the diagnosis. Hang in there!!!

Mommafirst · Apr 30, 2008

Welcome. I'm so sorry to hear all the things you've been dealing with. You sound like you have a great deal of information already, that's awesome.

I really wish that sweat tests would be completely unavailable at non-accredited centers. That 51 doesn't count for much when the level of accuracy is so questionned. At least you will get genetic testing and get concrete answers, as opposed to those that got "normal" scores and went on their way without being told that the numbers could of been wrong at an unaccredited center.

My daughter is the same age as your son. it was a devestating blow to get her diagnosis, but I do beleive that knowing and coping is much esier than the diagnosis. Hang in there!!!

Mommafirst · Apr 30, 2008

Welcome. I'm so sorry to hear all the things you've been dealing with. You sound like you have a great deal of information already, that's awesome.

I really wish that sweat tests would be completely unavailable at non-accredited centers. That 51 doesn't count for much when the level of accuracy is so questionned. At least you will get genetic testing and get concrete answers, as opposed to those that got "normal" scores and went on their way without being told that the numbers could of been wrong at an unaccredited center.

My daughter is the same age as your son. it was a devestating blow to get her diagnosis, but I do beleive that knowing and coping is much esier than the diagnosis. Hang in there!!!

Mommafirst · Apr 30, 2008

Welcome. I'm so sorry to hear all the things you've been dealing with. You sound like you have a great deal of information already, that's awesome.

I really wish that sweat tests would be completely unavailable at non-accredited centers. That 51 doesn't count for much when the level of accuracy is so questionned. At least you will get genetic testing and get concrete answers, as opposed to those that got "normal" scores and went on their way without being told that the numbers could of been wrong at an unaccredited center.

My daughter is the same age as your son. it was a devestating blow to get her diagnosis, but I do beleive that knowing and coping is much esier than the diagnosis. Hang in there!!!

Mommafirst · Apr 30, 2008

Welcome. I'm so sorry to hear all the things you've been dealing with. You sound like you have a great deal of information already, that's awesome.
 
 I really wish that sweat tests would be completely unavailable at non-accredited centers. That 51 doesn't count for much when the level of accuracy is so questionned. At least you will get genetic testing and get concrete answers, as opposed to those that got "normal" scores and went on their way without being told that the numbers could of been wrong at an unaccredited center.
 
 My daughter is the same age as your son. it was a devestating blow to get her diagnosis, but I do beleive that knowing and coping is much esier than the diagnosis. Hang in there!!!

Cherylwithone · Apr 30, 2008

Please hang in there. Tell your wife she did nothing wrong.
We have all traveled that path of blame. We found out late my daughter had CF. She did'nt grow or gained weight. They kept saying well your small. The thing is I grew when I was suppose to and was'nt sick all the time. My daughter just got on the growth chart this past year. 3% for height and weight we will take. Write a list of questions and bring a note book with you. They will put out alot of infomation and it's alot. I hope they are wrong but if not. There are some really great people on this site with so much information and just support beyond belief. You will surprise yourself and will be able to deal with this.

My prayer and thoughts go out to your family. Good luck on Thursday.

Cheryl mom to Malora 15 w/CF

Cherylwithone · Apr 30, 2008

Please hang in there. Tell your wife she did nothing wrong.
We have all traveled that path of blame. We found out late my daughter had CF. She did'nt grow or gained weight. They kept saying well your small. The thing is I grew when I was suppose to and was'nt sick all the time. My daughter just got on the growth chart this past year. 3% for height and weight we will take. Write a list of questions and bring a note book with you. They will put out alot of infomation and it's alot. I hope they are wrong but if not. There are some really great people on this site with so much information and just support beyond belief. You will surprise yourself and will be able to deal with this.

My prayer and thoughts go out to your family. Good luck on Thursday.

Cheryl mom to Malora 15 w/CF

Cherylwithone · Apr 30, 2008

Please hang in there. Tell your wife she did nothing wrong.
We have all traveled that path of blame. We found out late my daughter had CF. She did'nt grow or gained weight. They kept saying well your small. The thing is I grew when I was suppose to and was'nt sick all the time. My daughter just got on the growth chart this past year. 3% for height and weight we will take. Write a list of questions and bring a note book with you. They will put out alot of infomation and it's alot. I hope they are wrong but if not. There are some really great people on this site with so much information and just support beyond belief. You will surprise yourself and will be able to deal with this.

My prayer and thoughts go out to your family. Good luck on Thursday.

Cheryl mom to Malora 15 w/CF

Cherylwithone · Apr 30, 2008

Please hang in there. Tell your wife she did nothing wrong.
We have all traveled that path of blame. We found out late my daughter had CF. She did'nt grow or gained weight. They kept saying well your small. The thing is I grew when I was suppose to and was'nt sick all the time. My daughter just got on the growth chart this past year. 3% for height and weight we will take. Write a list of questions and bring a note book with you. They will put out alot of infomation and it's alot. I hope they are wrong but if not. There are some really great people on this site with so much information and just support beyond belief. You will surprise yourself and will be able to deal with this.

My prayer and thoughts go out to your family. Good luck on Thursday.

Cheryl mom to Malora 15 w/CF

Cherylwithone · Apr 30, 2008

Please hang in there. Tell your wife she did nothing wrong.
 We have all traveled that path of blame. We found out late my daughter had CF. She did'nt grow or gained weight. They kept saying well your small. The thing is I grew when I was suppose to and was'nt sick all the time. My daughter just got on the growth chart this past year. 3% for height and weight we will take. Write a list of questions and bring a note book with you. They will put out alot of infomation and it's alot. I hope they are wrong but if not. There are some really great people on this site with so much information and just support beyond belief. You will surprise yourself and will be able to deal with this.
 
 My prayer and thoughts go out to your family. Good luck on Thursday.
 
 Cheryl mom to Malora 15 w/CF

Alyssa · May 1, 2008

Hang in there - I know it's tough.

If it helps at all to say.... even if your child does have CF there is a pretty good chance he will out live you and your wife! I know of very many people with CF in their 60's and one who just turned 76 ! And they lived through a lot of years without correct treatment or diagnosis !

The young one's now, who get correct diagnosis and treatment right away do very well a lot of the time!

My kids health improved once we started treatments and could get the jump on infections -- knowing that a person has CF and getting the correct care, does make a big difference. If you have time, please read my blog (link in the signature line)

Please let us know how things turn out.

Just one small correction - I don't know if it was a typo for you or if you misunderstood... but he would need two mutations to have CF, not only one (although there are some cases out there where they can only find one, and perhaps the other gene is still unidentified -- but that is off topic to the point I was making)I just wanted you to know what you are looking for with genetic testing results...

Alyssa · May 1, 2008

Hang in there - I know it's tough.

If it helps at all to say.... even if your child does have CF there is a pretty good chance he will out live you and your wife! I know of very many people with CF in their 60's and one who just turned 76 ! And they lived through a lot of years without correct treatment or diagnosis !

The young one's now, who get correct diagnosis and treatment right away do very well a lot of the time!

My kids health improved once we started treatments and could get the jump on infections -- knowing that a person has CF and getting the correct care, does make a big difference. If you have time, please read my blog (link in the signature line)

Please let us know how things turn out.

Just one small correction - I don't know if it was a typo for you or if you misunderstood... but he would need two mutations to have CF, not only one (although there are some cases out there where they can only find one, and perhaps the other gene is still unidentified -- but that is off topic to the point I was making)I just wanted you to know what you are looking for with genetic testing results...

Alyssa · May 1, 2008

Hang in there - I know it's tough.

If it helps at all to say.... even if your child does have CF there is a pretty good chance he will out live you and your wife! I know of very many people with CF in their 60's and one who just turned 76 ! And they lived through a lot of years without correct treatment or diagnosis !

The young one's now, who get correct diagnosis and treatment right away do very well a lot of the time!

My kids health improved once we started treatments and could get the jump on infections -- knowing that a person has CF and getting the correct care, does make a big difference. If you have time, please read my blog (link in the signature line)

Please let us know how things turn out.

Just one small correction - I don't know if it was a typo for you or if you misunderstood... but he would need two mutations to have CF, not only one (although there are some cases out there where they can only find one, and perhaps the other gene is still unidentified -- but that is off topic to the point I was making)I just wanted you to know what you are looking for with genetic testing results...

Alyssa · May 1, 2008

Hang in there - I know it's tough.

If it helps at all to say.... even if your child does have CF there is a pretty good chance he will out live you and your wife! I know of very many people with CF in their 60's and one who just turned 76 ! And they lived through a lot of years without correct treatment or diagnosis !

The young one's now, who get correct diagnosis and treatment right away do very well a lot of the time!

My kids health improved once we started treatments and could get the jump on infections -- knowing that a person has CF and getting the correct care, does make a big difference. If you have time, please read my blog (link in the signature line)

Please let us know how things turn out.

Just one small correction - I don't know if it was a typo for you or if you misunderstood... but he would need two mutations to have CF, not only one (although there are some cases out there where they can only find one, and perhaps the other gene is still unidentified -- but that is off topic to the point I was making)I just wanted you to know what you are looking for with genetic testing results...

Alyssa · May 1, 2008

Hang in there - I know it's tough.
 
 If it helps at all to say.... even if your child does have CF there is a pretty good chance he will out live you and your wife! I know of very many people with CF in their 60's and one who just turned 76 ! And they lived through a lot of years without correct treatment or diagnosis !
 
 The young one's now, who get correct diagnosis and treatment right away do very well a lot of the time!
 
 My kids health improved once we started treatments and could get the jump on infections -- knowing that a person has CF and getting the correct care, does make a big difference. If you have time, please read my blog (link in the signature line)
 
 Please let us know how things turn out.
 
 Just one small correction - I don't know if it was a typo for you or if you misunderstood... but he would need two mutations to have CF, not only one (although there are some cases out there where they can only find one, and perhaps the other gene is still unidentified -- but that is off topic to the point I was making)I just wanted you to know what you are looking for with genetic testing results...

BabyBeauty · May 1, 2008