Need help finding something

julie

New member
I was hoping someone else would remember someone posting about a strange transfer of CF mutations in their family.... It was about 6 months ago or so (I've already used the search feature but no luck thusfar and I got a bit bored after about 120 old posts <img src="i/expressions/face-icon-small-smile.gif" border="0"> ).

MOM was not a carrier of ANY known mutation. Dad was a carrier of a common mutation (say Delta F 508). Baby was born, baby has CF. Baby has DOUBLE delta F 508. HOW CAN THIS BE????????????????? Something happend in utero and Chromosome 7 (where the CF mutation is) duplicated itself from dad into baby, and baby got 2 of dad's CF mutation chromosome 7's (even though dad only had one chromosome 7 with CF, rendering him JUST a carrier, it duplicated itself in the BABY so there were now 2) and the baby didn't get 1 of mom's chromosome 7's. So, the baby ends up with CF by a medical mystery in utero. Strange, but real.

Second case, similar situation. Mom is NOT a carrier of ANY known CF mutation. Dad is carrier of Delta F 508 and they have to use in vitro to get pregnant because dad has no sperm in ejaculate, but does not have CF (negative sweat test, only 1 mutation found). Baby is born, negative sweat test, has dads 1 mutation. Baby exhibits all sorts of CF symptoms, baby is tested again, sweat test negative, blood test negative. DR decides to re test dad with new, extended panel test because of male infertility factor. Dr gets results, Df508 and a rare newer mutation recently discovered. They test baby, the baby has both of dad's mutations and therefore CF. Similar thing happened in utero with this baby as with the previous case. Except, baby got both of dad's chromosome 7's (instead of the one with a CF mutation duplicating itself).

Does anyone recall these people posting?? I am trying to find the posts but I can't.

Thanks
 

julie

New member
I was hoping someone else would remember someone posting about a strange transfer of CF mutations in their family.... It was about 6 months ago or so (I've already used the search feature but no luck thusfar and I got a bit bored after about 120 old posts <img src="i/expressions/face-icon-small-smile.gif" border="0"> ).

MOM was not a carrier of ANY known mutation. Dad was a carrier of a common mutation (say Delta F 508). Baby was born, baby has CF. Baby has DOUBLE delta F 508. HOW CAN THIS BE????????????????? Something happend in utero and Chromosome 7 (where the CF mutation is) duplicated itself from dad into baby, and baby got 2 of dad's CF mutation chromosome 7's (even though dad only had one chromosome 7 with CF, rendering him JUST a carrier, it duplicated itself in the BABY so there were now 2) and the baby didn't get 1 of mom's chromosome 7's. So, the baby ends up with CF by a medical mystery in utero. Strange, but real.

Second case, similar situation. Mom is NOT a carrier of ANY known CF mutation. Dad is carrier of Delta F 508 and they have to use in vitro to get pregnant because dad has no sperm in ejaculate, but does not have CF (negative sweat test, only 1 mutation found). Baby is born, negative sweat test, has dads 1 mutation. Baby exhibits all sorts of CF symptoms, baby is tested again, sweat test negative, blood test negative. DR decides to re test dad with new, extended panel test because of male infertility factor. Dr gets results, Df508 and a rare newer mutation recently discovered. They test baby, the baby has both of dad's mutations and therefore CF. Similar thing happened in utero with this baby as with the previous case. Except, baby got both of dad's chromosome 7's (instead of the one with a CF mutation duplicating itself).

Does anyone recall these people posting?? I am trying to find the posts but I can't.

Thanks
 

JazzysMom

New member
Yes Julie I do remember this because it was around the time that my friend had her son tested for CF & she was tested to see if she had the gene. I didnt want to bust my friends bubble by telling her about this "fluke" since it is rare. I will help you search for this posting. I know it exists.....we BOTh cant we crazy, can we?!
 

JazzysMom

New member
Yes Julie I do remember this because it was around the time that my friend had her son tested for CF & she was tested to see if she had the gene. I didnt want to bust my friends bubble by telling her about this "fluke" since it is rare. I will help you search for this posting. I know it exists.....we BOTh cant we crazy, can we?!
 

julie

New member
ahhhh, at least I know I'm not a nutcase! Or am I?

I don't think both of us can be crazy and imagine the exact same posting.... I guess we'll see though <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

julie

New member
ahhhh, at least I know I'm not a nutcase! Or am I?

I don't think both of us can be crazy and imagine the exact same posting.... I guess we'll see though <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
Julie,
I remember reading it as well and thinking what are the odds? That must be crazy but real. Anyway, if I come across it I will let you know. Who knows maybe the 3 of us had the same dream<img src="i/expressions/face-icon-small-smile.gif" border="0">

EMilee
 
Julie,
I remember reading it as well and thinking what are the odds? That must be crazy but real. Anyway, if I come across it I will let you know. Who knows maybe the 3 of us had the same dream<img src="i/expressions/face-icon-small-smile.gif" border="0">

EMilee
 

debs2girls

New member
I also remember reading it so maybe the whole bunch of us is bonkers...lol...good luck finding it....Julie, dont stress too much right now....I know where you are going with this....
 

debs2girls

New member
I also remember reading it so maybe the whole bunch of us is bonkers...lol...good luck finding it....Julie, dont stress too much right now....I know where you are going with this....
 

abloedel

New member
I know this isn't exactly what you are looking for, but my test showed 3 mutations (got a two for one on my F508), so my daughter is being genetic tested now, so it's "possible" that even though she inherits only "one" of my mutations, that if she gets my 2 for 1, they could class her as having CF. We are working with the genetic counselor and quest diagnostics now about this issue.

I tried to attach my report for you but it is too big. If you want it, let me know and I'll email it to you. Don't know if you'll find it helpful or not.
 

abloedel

New member
I know this isn't exactly what you are looking for, but my test showed 3 mutations (got a two for one on my F508), so my daughter is being genetic tested now, so it's "possible" that even though she inherits only "one" of my mutations, that if she gets my 2 for 1, they could class her as having CF. We are working with the genetic counselor and quest diagnostics now about this issue.

I tried to attach my report for you but it is too big. If you want it, let me know and I'll email it to you. Don't know if you'll find it helpful or not.
 

Landy

New member
Julie,
Does this help at all?
http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=3383&FTVAR_MSGDBTABLE=

<i>edited to add another thread:</i>
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=2255&FTVAR_MSGDBTABLE=

I'm not sure if these could be the thread you're referring to, but it could be a start??
Hope you're feeling good<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Landy

New member
Julie,
Does this help at all?
http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=3383&FTVAR_MSGDBTABLE=

<i>edited to add another thread:</i>
http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=2255&FTVAR_MSGDBTABLE=

I'm not sure if these could be the thread you're referring to, but it could be a start??
Hope you're feeling good<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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