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A WWYD
- Thread starter BarbaraW
- Start date
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i> Of course she could have 2 mutations even tho the others have only one. Barbara, what is the CF Doctor recommending? Bill</end quote></div> </P>
<P> </P>
<P> </P>
<P>never thought of that. Guess it could provide some useful info after all. </P>
<P> </P>
<P>CF doctor is leaving it up to us. He would like to have her tested, but agrees that she will most likely be in limbo like the other 2. I know there is no ahrm to having her tested. I just feel like if we don't get a def. answer, which I know we most liekly won't, then I will have to worry about her as well.</P>
<P> </P>
<P>Of course, the best way would be if she did not have the S1235R. I guess that would give us piece of mind.</P>
<P> </P>
<P>DS is being bronched on Monday, so I can talk to him more about it then.</P>
<P> </P>
<P> </P>
<P>never thought of that. Guess it could provide some useful info after all. </P>
<P> </P>
<P>CF doctor is leaving it up to us. He would like to have her tested, but agrees that she will most likely be in limbo like the other 2. I know there is no ahrm to having her tested. I just feel like if we don't get a def. answer, which I know we most liekly won't, then I will have to worry about her as well.</P>
<P> </P>
<P>Of course, the best way would be if she did not have the S1235R. I guess that would give us piece of mind.</P>
<P> </P>
<P>DS is being bronched on Monday, so I can talk to him more about it then.</P>
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i> Of course she could have 2 mutations even tho the others have only one. Barbara, what is the CF Doctor recommending? Bill</end quote> </P>
<P></P>
<P></P>
<P>never thought of that. Guess it could provide some useful info after all. </P>
<P></P>
<P>CF doctor is leaving it up to us. He would like to have her tested, but agrees that she will most likely be in limbo like the other 2. I know there is no ahrm to having her tested. I just feel like if we don't get a def. answer, which I know we most liekly won't, then I will have to worry about her as well.</P>
<P></P>
<P>Of course, the best way would be if she did not have the S1235R. I guess that would give us piece of mind.</P>
<P></P>
<P>DS is being bronched on Monday, so I can talk to him more about it then.</P>
<P></P>
<P></P>
<P>never thought of that. Guess it could provide some useful info after all. </P>
<P></P>
<P>CF doctor is leaving it up to us. He would like to have her tested, but agrees that she will most likely be in limbo like the other 2. I know there is no ahrm to having her tested. I just feel like if we don't get a def. answer, which I know we most liekly won't, then I will have to worry about her as well.</P>
<P></P>
<P>Of course, the best way would be if she did not have the S1235R. I guess that would give us piece of mind.</P>
<P></P>
<P>DS is being bronched on Monday, so I can talk to him more about it then.</P>
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i> Of course she could have 2 mutations even tho the others have only one. Barbara, what is the CF Doctor recommending? Bill</end quote> </P>
<P></P>
<P></P>
<P>never thought of that. Guess it could provide some useful info after all. </P>
<P></P>
<P>CF doctor is leaving it up to us. He would like to have her tested, but agrees that she will most likely be in limbo like the other 2. I know there is no ahrm to having her tested. I just feel like if we don't get a def. answer, which I know we most liekly won't, then I will have to worry about her as well.</P>
<P></P>
<P>Of course, the best way would be if she did not have the S1235R. I guess that would give us piece of mind.</P>
<P></P>
<P>DS is being bronched on Monday, so I can talk to him more about it then.</P>
<P></P>
<P></P>
<P>never thought of that. Guess it could provide some useful info after all. </P>
<P></P>
<P>CF doctor is leaving it up to us. He would like to have her tested, but agrees that she will most likely be in limbo like the other 2. I know there is no ahrm to having her tested. I just feel like if we don't get a def. answer, which I know we most liekly won't, then I will have to worry about her as well.</P>
<P></P>
<P>Of course, the best way would be if she did not have the S1235R. I guess that would give us piece of mind.</P>
<P></P>
<P>DS is being bronched on Monday, so I can talk to him more about it then.</P>
<P><div class="FTQUOTE"><begin quote>Originally posted by: Printer Of course she could have 2 mutations even tho the others have only one. Barbara, what is the CF Doctor recommending? Bill</end quote></div> While anything is possible, the statistically odds of the two symptomatic patients not showing a mutation that is then found in the non-symptomatic sibling are astronomically small. Barbara, look at it this way: Either you or your husband have the mutation found in your boys. There is a 50% chance your daughter also has that one. The other parent either has a normal gene or one with an unknown mutation. There is a 50% chance she got that one as well. Therefore, the results of the test will be 50/50 that either she got the same gene as her brothers or not. If they want to run the test, there is no harm done, but it shouldn't change how they treat her. Without a clear diagnosis, you should always treat symptoms not a label</P>
<P>Just my .02 worth. </P>
<P>Just my .02 worth. </P>
<P><div class="FTQUOTE"><begin quote>Originally posted by: Printer Of course she could have 2 mutations even tho the others have only one. Barbara, what is the CF Doctor recommending? Bill</end quote> While anything is possible, the statistically odds of the two symptomatic patients not showing a mutation that is then found in the non-symptomatic sibling are astronomically small.Barbara, look at it this way:Either you or your husband have the mutation found in your boys. There is a 50% chance your daughter also has that one. The other parent either has a normal gene or one with an unknown mutation. There is a 50% chance she got that one as well.Therefore, the results of the test will be 50/50 that either she got the same gene as her brothers or not.If they want to run the test, there is no harm done, but it shouldn't change how they treat her. Without a clear diagnosis, you should always treat symptoms not a label</P>
<P>Just my .02 worth.</P>
<P>Just my .02 worth.</P>
<P><div class="FTQUOTE"><begin quote>Originally posted by: Printer Of course she could have 2 mutations even tho the others have only one. Barbara, what is the CF Doctor recommending? Bill</end quote> <BR><BR>While anything is possible, the statistically odds of the two symptomatic patients not showing a mutation that is then found in the non-symptomatic sibling are astronomically small.<BR><BR>Barbara, look at it this way:<BR><BR>Either you or your husband have the mutation found in your boys. There is a 50% chance your daughter also has that one. The other parent either has a normal gene or one with an unknown mutation. There is a 50% chance she got that one as well.<BR><BR>Therefore, the results of the test will be 50/50 that either she got the same gene as her brothers or not.<BR><BR>If they want to run the test, there is no harm done, but it shouldn't change how they treat her. Without a clear diagnosis, you should always treat symptoms not a label</P>
<P>Just my .02 worth.<BR><BR></P>
<P>Just my .02 worth.<BR><BR></P>
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i> Have BOTH you and hubby been tested. You would BOTH have to be carriers in order for kids to have 2 mutations. Bill</end quote></div> </P>
<P> </P>
<P>I can save the time and cost for this test:</P>
<P>One of them has the mutation found in their sons.</P>
<P>The other will likely no mutation found (since they didn't find it in the boys).</P>
<P> </P>
<P>I can save the time and cost for this test:</P>
<P>One of them has the mutation found in their sons.</P>
<P>The other will likely no mutation found (since they didn't find it in the boys).</P>
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i> Have BOTH you and hubby been tested. You would BOTH have to be carriers in order for kids to have 2 mutations. Bill</end quote> </P>
<P></P>
<P>I can save the time and cost for this test:</P>
<P>One of them has the mutation found in their sons.</P>
<P>The other will likely no mutation found (since they didn't find it in the boys).</P>
<P></P>
<P>I can save the time and cost for this test:</P>
<P>One of them has the mutation found in their sons.</P>
<P>The other will likely no mutation found (since they didn't find it in the boys).</P>
<P><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i> Have BOTH you and hubby been tested. You would BOTH have to be carriers in order for kids to have 2 mutations. Bill</end quote> </P>
<P></P>
<P>I can save the time and cost for this test:</P>
<P><BR>One of them has the mutation found in their sons.</P>
<P>The other will likely no mutation found (since they didn't find it in the boys).</P>
<P></P>
<P>I can save the time and cost for this test:</P>
<P><BR>One of them has the mutation found in their sons.</P>
<P>The other will likely no mutation found (since they didn't find it in the boys).</P>
Hi, I haven't posted here recently, but when I saw that your child has the S1235R mutation, thought I would reply. My oldest ds, now 17, also has this mutation and at his last pulm appt the Dr. said CRMS is what they are calling it. He is also PI and also has a positive sweat test now. When he was younger his sweat test was high normal. <br><br>Anyway his younger brother has been tested and has a different mutation. He has sinus disease and had surgery for this and had his gallbladder removed last year. I'm glad that we had them both tested or we wouldn't know that they each have a different mutation.<br><br>Good luck with your decision.<br>
Hi, I haven't posted here recently, but when I saw that your child has the S1235R mutation, thought I would reply. My oldest ds, now 17, also has this mutation and at his last pulm appt the Dr. said CRMS is what they are calling it. He is also PI and also has a positive sweat test now. When he was younger his sweat test was high normal. <br><br>Anyway his younger brother has been tested and has a different mutation. He has sinus disease and had surgery for this and had his gallbladder removed last year. I'm glad that we had them both tested or we wouldn't know that they each have a different mutation.<br><br>Good luck with your decision.<br>
Hi, I haven't posted here recently, but when I saw that your child has the S1235R mutation, thought I would reply. My oldest ds, now 17, also has this mutation and at his last pulm appt the Dr. said CRMS is what they are calling it. He is also PI and also has a positive sweat test now. When he was younger his sweat test was high normal. <br><br>Anyway his younger brother has been tested and has a different mutation. He has sinus disease and had surgery for this and had his gallbladder removed last year. I'm glad that we had them both tested or we wouldn't know that they each have a different mutation.<br><br>Good luck with your decision.<br>
M
Mommafirst
Guest
I think I'd want a sweat test done, but I don't think the expensive genetic test is going to tell you much. If your others are dealing with an unknown mutation and they are 100% siblings with the child in question, the cost is too high for the liklihood of giving information )(and I'm ALWAYS one to suggest doing ALL the testing). There just seems to be too many opinions that you will do all this and not rule anything out. Unfortunately, there is no way to rule CF out. ...unless you have your dd JUST tested for the one known mutation. If she doesn't have it, you can be pretty confident that she doesn't have CF.