Back from Grand Rapids and confused as ever.

H

holmfamily1992

New member
I did know that you can request records but with all the confusion and stress lately I just simply forgot. Thank you for reminding me.

I am so afraid for those who test negative and arent treated. The only reason they sent our other childrens blood to Mayo was because of Dylans mutation. I tested negative and I have very similar signs except for the oily stools and I carry the actual mutation. Hmmmmmmm.....our Doctor didnt even care when I told him. I was diagnosed with asthma around his age and the older I get the worse it gets. Hmmmmmm..Not what I really wanted to think about.

What happens with those people or children who test negative on the sweat test and have Cf and they dont even know it because the Doctors wont take it even further??

This is definately something more to think about.

Tina
 
H

holmfamily1992

New member
I did know that you can request records but with all the confusion and stress lately I just simply forgot. Thank you for reminding me.

I am so afraid for those who test negative and arent treated. The only reason they sent our other childrens blood to Mayo was because of Dylans mutation. I tested negative and I have very similar signs except for the oily stools and I carry the actual mutation. Hmmmmmmm.....our Doctor didnt even care when I told him. I was diagnosed with asthma around his age and the older I get the worse it gets. Hmmmmmm..Not what I really wanted to think about.

What happens with those people or children who test negative on the sweat test and have Cf and they dont even know it because the Doctors wont take it even further??

This is definately something more to think about.

Tina
 
H

holmfamily1992

New member
I did know that you can request records but with all the confusion and stress lately I just simply forgot. Thank you for reminding me.

I am so afraid for those who test negative and arent treated. The only reason they sent our other childrens blood to Mayo was because of Dylans mutation. I tested negative and I have very similar signs except for the oily stools and I carry the actual mutation. Hmmmmmmm.....our Doctor didnt even care when I told him. I was diagnosed with asthma around his age and the older I get the worse it gets. Hmmmmmm..Not what I really wanted to think about.

What happens with those people or children who test negative on the sweat test and have Cf and they dont even know it because the Doctors wont take it even further??

This is definately something more to think about.

Tina
 
H

holmfamily1992

New member
I did know that you can request records but with all the confusion and stress lately I just simply forgot. Thank you for reminding me.

I am so afraid for those who test negative and arent treated. The only reason they sent our other childrens blood to Mayo was because of Dylans mutation. I tested negative and I have very similar signs except for the oily stools and I carry the actual mutation. Hmmmmmmm.....our Doctor didnt even care when I told him. I was diagnosed with asthma around his age and the older I get the worse it gets. Hmmmmmm..Not what I really wanted to think about.

What happens with those people or children who test negative on the sweat test and have Cf and they dont even know it because the Doctors wont take it even further??

This is definately something more to think about.

Tina
 
H

holmfamily1992

New member
I did know that you can request records but with all the confusion and stress lately I just simply forgot. Thank you for reminding me.
<br />
<br />I am so afraid for those who test negative and arent treated. The only reason they sent our other childrens blood to Mayo was because of Dylans mutation. I tested negative and I have very similar signs except for the oily stools and I carry the actual mutation. Hmmmmmmm.....our Doctor didnt even care when I told him. I was diagnosed with asthma around his age and the older I get the worse it gets. Hmmmmmm..Not what I really wanted to think about.
<br />
<br />What happens with those people or children who test negative on the sweat test and have Cf and they dont even know it because the Doctors wont take it even further??
<br />
<br />This is definately something more to think about.
<br />
<br />Tina
 
A

Alyssa

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>holmfamily1992</b></i>

At least one of my children is already showing symptoms. He is my youngest. (clubbing, low weight gain, frequent bronchitis) He is 5 and weighed in at 41 pounds. What kind of damage would it have done to start him on something and then take him off if he doesnt have any mutuations??


Tina</end quote></div>

I don't think there are any CF treatments that would harm someone who does not have CF.

Also keep in mind that even if the test results don't find any CF genes and he still exhibits classic CF symptom he could still have CF but just not have 2 known CF genes. It wasn't all that long ago that they started with only 350 genes identified and now we are up to over 1500, so with the classic symptoms that you have mentioned I would imagine he would still be treated "as if he has CF" even if they don't find both CF genes.
 
A

Alyssa

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>holmfamily1992</b></i>

At least one of my children is already showing symptoms. He is my youngest. (clubbing, low weight gain, frequent bronchitis) He is 5 and weighed in at 41 pounds. What kind of damage would it have done to start him on something and then take him off if he doesnt have any mutuations??


Tina</end quote></div>

I don't think there are any CF treatments that would harm someone who does not have CF.

Also keep in mind that even if the test results don't find any CF genes and he still exhibits classic CF symptom he could still have CF but just not have 2 known CF genes. It wasn't all that long ago that they started with only 350 genes identified and now we are up to over 1500, so with the classic symptoms that you have mentioned I would imagine he would still be treated "as if he has CF" even if they don't find both CF genes.
 
A

Alyssa

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>holmfamily1992</b></i>

At least one of my children is already showing symptoms. He is my youngest. (clubbing, low weight gain, frequent bronchitis) He is 5 and weighed in at 41 pounds. What kind of damage would it have done to start him on something and then take him off if he doesnt have any mutuations??


Tina</end quote></div>

I don't think there are any CF treatments that would harm someone who does not have CF.

Also keep in mind that even if the test results don't find any CF genes and he still exhibits classic CF symptom he could still have CF but just not have 2 known CF genes. It wasn't all that long ago that they started with only 350 genes identified and now we are up to over 1500, so with the classic symptoms that you have mentioned I would imagine he would still be treated "as if he has CF" even if they don't find both CF genes.
 
A

Alyssa

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>holmfamily1992</b></i>

At least one of my children is already showing symptoms. He is my youngest. (clubbing, low weight gain, frequent bronchitis) He is 5 and weighed in at 41 pounds. What kind of damage would it have done to start him on something and then take him off if he doesnt have any mutuations??


Tina</end quote>

I don't think there are any CF treatments that would harm someone who does not have CF.

Also keep in mind that even if the test results don't find any CF genes and he still exhibits classic CF symptom he could still have CF but just not have 2 known CF genes. It wasn't all that long ago that they started with only 350 genes identified and now we are up to over 1500, so with the classic symptoms that you have mentioned I would imagine he would still be treated "as if he has CF" even if they don't find both CF genes.
 
A

Alyssa

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>holmfamily1992</b></i>
<br />
<br />At least one of my children is already showing symptoms. He is my youngest. (clubbing, low weight gain, frequent bronchitis) He is 5 and weighed in at 41 pounds. What kind of damage would it have done to start him on something and then take him off if he doesnt have any mutuations??
<br />
<br />
<br />Tina</end quote>
<br />
<br />I don't think there are any CF treatments that would harm someone who does not have CF.
<br />
<br />Also keep in mind that even if the test results don't find any CF genes and he still exhibits classic CF symptom he could still have CF but just not have 2 known CF genes. It wasn't all that long ago that they started with only 350 genes identified and now we are up to over 1500, so with the classic symptoms that you have mentioned I would imagine he would still be treated "as if he has CF" even if they don't find both CF genes.
 
C

clawson5104

New member
WOW 5months.....it took 3 weeks to get Wade's preliminary results and 6weeks total for final. and i thought that was long!!! I dont trust those sweat tests really. wade was borderline....43. I had different results for two of my sons. who have some symptoms.....one's was in upper 20's and his second went down to 14. but has alot of symptoms....my other son had 20s in first test...and it went up in 30's second....but getting them to go forth with genetic is nearly impossible...oldest son's stayed the same....still fighting....good thing you had no trouble with that.....
You are AMAZING......I don't know how you handle everything.....my prayers are with you....especially for speedy results .....
 
C

clawson5104

New member
WOW 5months.....it took 3 weeks to get Wade's preliminary results and 6weeks total for final. and i thought that was long!!! I dont trust those sweat tests really. wade was borderline....43. I had different results for two of my sons. who have some symptoms.....one's was in upper 20's and his second went down to 14. but has alot of symptoms....my other son had 20s in first test...and it went up in 30's second....but getting them to go forth with genetic is nearly impossible...oldest son's stayed the same....still fighting....good thing you had no trouble with that.....
You are AMAZING......I don't know how you handle everything.....my prayers are with you....especially for speedy results .....
 
C

clawson5104

New member
WOW 5months.....it took 3 weeks to get Wade's preliminary results and 6weeks total for final. and i thought that was long!!! I dont trust those sweat tests really. wade was borderline....43. I had different results for two of my sons. who have some symptoms.....one's was in upper 20's and his second went down to 14. but has alot of symptoms....my other son had 20s in first test...and it went up in 30's second....but getting them to go forth with genetic is nearly impossible...oldest son's stayed the same....still fighting....good thing you had no trouble with that.....
You are AMAZING......I don't know how you handle everything.....my prayers are with you....especially for speedy results .....
 
C

clawson5104

New member
WOW 5months.....it took 3 weeks to get Wade's preliminary results and 6weeks total for final. and i thought that was long!!! I dont trust those sweat tests really. wade was borderline....43. I had different results for two of my sons. who have some symptoms.....one's was in upper 20's and his second went down to 14. but has alot of symptoms....my other son had 20s in first test...and it went up in 30's second....but getting them to go forth with genetic is nearly impossible...oldest son's stayed the same....still fighting....good thing you had no trouble with that.....
You are AMAZING......I don't know how you handle everything.....my prayers are with you....especially for speedy results .....
 
C

clawson5104

New member
WOW 5months.....it took 3 weeks to get Wade's preliminary results and 6weeks total for final. and i thought that was long!!! I dont trust those sweat tests really. wade was borderline....43. I had different results for two of my sons. who have some symptoms.....one's was in upper 20's and his second went down to 14. but has alot of symptoms....my other son had 20s in first test...and it went up in 30's second....but getting them to go forth with genetic is nearly impossible...oldest son's stayed the same....still fighting....good thing you had no trouble with that.....
<br />You are AMAZING......I don't know how you handle everything.....my prayers are with you....especially for speedy results .....
 
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