Results are in

[momoffive]

My son has no mutations on the 40 panel. I am very glad, and at this point I think I will see what happens after this biopsy. I am concerned he may have a condition called SDS - but will discuss it with the GI and see what she thinks!

Thank you all so much for sharing your support and advice with me. You and your stories have touched me in a way I will never forget! I plan on walking in Great Strides again this year, a good friend's daughter has CF - last year we raised nearly $1000. Thank you again!

 

[momoffive]

My son has no mutations on the 40 panel. I am very glad, and at this point I think I will see what happens after this biopsy. I am concerned he may have a condition called SDS - but will discuss it with the GI and see what she thinks!

Thank you all so much for sharing your support and advice with me. You and your stories have touched me in a way I will never forget! I plan on walking in Great Strides again this year, a good friend's daughter has CF - last year we raised nearly $1000. Thank you again!

 

[momoffive]

My son has no mutations on the 40 panel. I am very glad, and at this point I think I will see what happens after this biopsy. I am concerned he may have a condition called SDS - but will discuss it with the GI and see what she thinks!

Thank you all so much for sharing your support and advice with me. You and your stories have touched me in a way I will never forget! I plan on walking in Great Strides again this year, a good friend's daughter has CF - last year we raised nearly $1000. Thank you again!

 

[momoffive]

My son has no mutations on the 40 panel. I am very glad, and at this point I think I will see what happens after this biopsy. I am concerned he may have a condition called SDS - but will discuss it with the GI and see what she thinks!

Thank you all so much for sharing your support and advice with me. You and your stories have touched me in a way I will never forget! I plan on walking in Great Strides again this year, a good friend's daughter has CF - last year we raised nearly $1000. Thank you again!

 

[momoffive]

My son has no mutations on the 40 panel. I am very glad, and at this point I think I will see what happens after this biopsy. I am concerned he may have a condition called SDS - but will discuss it with the GI and see what she thinks!

Thank you all so much for sharing your support and advice with me. You and your stories have touched me in a way I will never forget! I plan on walking in Great Strides again this year, a good friend's daughter has CF - last year we raised nearly $1000. Thank you again!

 

[Alyssa]

Yeah! That is nice news - based on what Steven from Ambry said.... looks like you are in the clear !

Best of luck - I hope you get some other answers that will lead to a healthier kid!

EDITED:
Whoops, I had your info mixed up with Alexsmom -- sweat test of 7 & 8....

Refresh my memory -- has your son had a sweat test at an accredited facility?

 

[Alyssa]

Yeah! That is nice news - based on what Steven from Ambry said.... looks like you are in the clear !

Best of luck - I hope you get some other answers that will lead to a healthier kid!

EDITED:
Whoops, I had your info mixed up with Alexsmom -- sweat test of 7 & 8....

Refresh my memory -- has your son had a sweat test at an accredited facility?

 

[Alyssa]

Yeah! That is nice news - based on what Steven from Ambry said.... looks like you are in the clear !

Best of luck - I hope you get some other answers that will lead to a healthier kid!

EDITED:
Whoops, I had your info mixed up with Alexsmom -- sweat test of 7 & 8....

Refresh my memory -- has your son had a sweat test at an accredited facility?

 

[Alyssa]

Yeah! That is nice news - based on what Steven from Ambry said.... looks like you are in the clear !

Best of luck - I hope you get some other answers that will lead to a healthier kid!

EDITED:
Whoops, I had your info mixed up with Alexsmom -- sweat test of 7 & 8....

Refresh my memory -- has your son had a sweat test at an accredited facility?

 

[Alyssa]

Yeah! That is nice news - based on what Steven from Ambry said.... looks like you are in the clear !

Best of luck - I hope you get some other answers that will lead to a healthier kid!

EDITED:
Whoops, I had your info mixed up with Alexsmom -- sweat test of 7 & 8....

Refresh my memory -- has your son had a sweat test at an accredited facility?

 

[Alyssa]

Ok, I found your original post -- and have now answered my own question.....

I don't want to rain on your parade, and it would be very nice if you knew for sure that your son does not have CF, but with a sweat test from an accredited center of 37.... I would continue to push for full genetic testing... with only testing for 40 they left out looking for the other 1501 CF genes that are out there (I believe there are 1,541)

I know it was a difficult battle for you to get the testing for 40 done, but knowing that my daughter went misdiagnosed for 8 years because of a sweat test number of 38, and knowing that numerous people on this board have sweat test numbers in the normal range -- my best advice to you or anyone in your shoes is to continue to ask for a full Amby panel.

 

[Alyssa]

Ok, I found your original post -- and have now answered my own question.....

I don't want to rain on your parade, and it would be very nice if you knew for sure that your son does not have CF, but with a sweat test from an accredited center of 37.... I would continue to push for full genetic testing... with only testing for 40 they left out looking for the other 1501 CF genes that are out there (I believe there are 1,541)

I know it was a difficult battle for you to get the testing for 40 done, but knowing that my daughter went misdiagnosed for 8 years because of a sweat test number of 38, and knowing that numerous people on this board have sweat test numbers in the normal range -- my best advice to you or anyone in your shoes is to continue to ask for a full Amby panel.

 

[Alyssa]

Ok, I found your original post -- and have now answered my own question.....

I don't want to rain on your parade, and it would be very nice if you knew for sure that your son does not have CF, but with a sweat test from an accredited center of 37.... I would continue to push for full genetic testing... with only testing for 40 they left out looking for the other 1501 CF genes that are out there (I believe there are 1,541)

I know it was a difficult battle for you to get the testing for 40 done, but knowing that my daughter went misdiagnosed for 8 years because of a sweat test number of 38, and knowing that numerous people on this board have sweat test numbers in the normal range -- my best advice to you or anyone in your shoes is to continue to ask for a full Amby panel.

 

[Alyssa]

Ok, I found your original post -- and have now answered my own question.....

I don't want to rain on your parade, and it would be very nice if you knew for sure that your son does not have CF, but with a sweat test from an accredited center of 37.... I would continue to push for full genetic testing... with only testing for 40 they left out looking for the other 1501 CF genes that are out there (I believe there are 1,541)

I know it was a difficult battle for you to get the testing for 40 done, but knowing that my daughter went misdiagnosed for 8 years because of a sweat test number of 38, and knowing that numerous people on this board have sweat test numbers in the normal range -- my best advice to you or anyone in your shoes is to continue to ask for a full Amby panel.

 

[Alyssa]

Ok, I found your original post -- and have now answered my own question.....

I don't want to rain on your parade, and it would be very nice if you knew for sure that your son does not have CF, but with a sweat test from an accredited center of 37.... I would continue to push for full genetic testing... with only testing for 40 they left out looking for the other 1501 CF genes that are out there (I believe there are 1,541)

I know it was a difficult battle for you to get the testing for 40 done, but knowing that my daughter went misdiagnosed for 8 years because of a sweat test number of 38, and knowing that numerous people on this board have sweat test numbers in the normal range -- my best advice to you or anyone in your shoes is to continue to ask for a full Amby panel.

 

[momja]

I agree that you should push for the full panel of testing based on what the sweat numbers were. Hopefully you are in the clear.

I've ran across SDS in my research for my son and I'm sure that will be something that he's tested for as well. Right now we're still trying to rule out Celiac Disease, and I'm still not convinced we're clear on the CF.

Good Luck, please keep us posted.

 

[momja]

I agree that you should push for the full panel of testing based on what the sweat numbers were. Hopefully you are in the clear.

I've ran across SDS in my research for my son and I'm sure that will be something that he's tested for as well. Right now we're still trying to rule out Celiac Disease, and I'm still not convinced we're clear on the CF.

Good Luck, please keep us posted.

 

[momja]

I agree that you should push for the full panel of testing based on what the sweat numbers were. Hopefully you are in the clear.

I've ran across SDS in my research for my son and I'm sure that will be something that he's tested for as well. Right now we're still trying to rule out Celiac Disease, and I'm still not convinced we're clear on the CF.

Good Luck, please keep us posted.

 

[momja]

I agree that you should push for the full panel of testing based on what the sweat numbers were. Hopefully you are in the clear.

I've ran across SDS in my research for my son and I'm sure that will be something that he's tested for as well. Right now we're still trying to rule out Celiac Disease, and I'm still not convinced we're clear on the CF.

Good Luck, please keep us posted.

 

[momja]

I agree that you should push for the full panel of testing based on what the sweat numbers were. Hopefully you are in the clear.

I've ran across SDS in my research for my son and I'm sure that will be something that he's tested for as well. Right now we're still trying to rule out Celiac Disease, and I'm still not convinced we're clear on the CF.

Good Luck, please keep us posted.