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Genealogy, children, PGD Discuss family and preimplantation genetic diagnosis issues

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Old 03-01-17, 02:21 AM   #1
jessipeachy
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Join Date: Dec 2016
Posts: 2
Default HD & CVS Testing

Hi there,

My husband has the mutant Huntington's gene with a repeat of 43. We are both 30. We first tried the route of IVF w/ PGD, unfortunately we found out that I have a low egg reserve and that it would take probably 3 rounds of IVF until we were able to get enough eggs. Because of this, we have decided to go the natural route just once before going with IVF & PGD.

We were extremely lucky and after only a few months of trying, got pregnant and I am now 6 weeks, 4 days along.

If anyone has undergone CVS testing, what has your experience been like? Is Huntington's part of the FISH results that you can rush?

Thank you in advance!
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Old 06-01-17, 07:42 PM   #2
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 331
Default Re: HD & CVS Testing

Quote:
Originally Posted by jessipeachy View Post
Hi there,

My husband has the mutant Huntington's gene with a repeat of 43. We are both 30. We first tried the route of IVF w/ PGD, unfortunately we found out that I have a low egg reserve and that it would take probably 3 rounds of IVF until we were able to get enough eggs. Because of this, we have decided to go the natural route just once before going with IVF & PGD.

We were extremely lucky and after only a few months of trying, got pregnant and I am now 6 weeks, 4 days along.

If anyone has undergone CVS testing, what has your experience been like? Is Huntington's part of the FISH results that you can rush?

Thank you in advance!
Just thought i would respond and say Hi as I can't actually help with your question as not had to deal with this ,I'm sure someone can, but please read through others questions and replies on this subject in meantime .

Gabby
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Old 29-01-17, 12:03 AM   #3
coco
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Join Date: Oct 2008
Posts: 4
Default Re: HD & CVS Testing

Quote:
Originally Posted by jessipeachy View Post
Hi there,

My husband has the mutant Huntington's gene with a repeat of 43. We are both 30. We first tried the route of IVF w/ PGD, unfortunately we found out that I have a low egg reserve and that it would take probably 3 rounds of IVF until we were able to get enough eggs. Because of this, we have decided to go the natural route just once before going with IVF & PGD.

We were extremely lucky and after only a few months of trying, got pregnant and I am now 6 weeks, 4 days along.

If anyone has undergone CVS testing, what has your experience been like? Is Huntington's part of the FISH results that you can rush?

Thank you in advance!
Hi,

Congratulations on you pregnancy,

I have just been through CVS after a surprise pregnancy, my advice would be to think carefully, it's not worth testing if you are not prepared to terminate the pregnancy and a repeat of 43 is quite low in my opinion, my genetics councillor wouldn't tell me what my repeat was so I imagine its a lot higher than that,

I had CVS at 11 weeks, the results come back in a week, the cvs test itself is uncomfortable but over before you know it,

Unfortunately for my baby it was not good news and because I'm over 13 weeks the NHS trust won't do a surgical termination, I've had to look into a private clinic who will call me in a weeks time with a view to the treatment being in 7 days after that, by which time my much loved and wanted baby will be almost 16 weeks and probably moving around. This is a situation I wouldn't wish on anyone. I'm still not 100% sure I can go through with it.

I really hope the outcome is better for you, good luck fingers crossed for you, if you want any other information please get in contact xxx
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Old 29-01-17, 02:08 PM   #4
coco
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Join Date: Oct 2008
Posts: 4
Default Re: HD & CVS Testing

Quote:
Originally Posted by jessipeachy View Post
Hi there,

My husband has the mutant Huntington's gene with a repeat of 43. We are both 30. We first tried the route of IVF w/ PGD, unfortunately we found out that I have a low egg reserve and that it would take probably 3 rounds of IVF until we were able to get enough eggs. Because of this, we have decided to go the natural route just once before going with IVF & PGD.

We were extremely lucky and after only a few months of trying, got pregnant and I am now 6 weeks, 4 days along.

If anyone has undergone CVS testing, what has your experience been like? Is Huntington's part of the FISH results that you can rush?

Thank you in advance!
Hi gabby,

I've just been through CVS I had posted a long post but it doesn't seem to have been publushed, if you still need info let me know, it's definately a rollercoster of emotions I wish you all the best, it wasn't a great outcome for me, wouldn't wish it on anyone, mainly you have to remember you'll be around 13 weeks when you have to make I discission on your pregnancy if you have a bad result, after 13 weeks the NHS trust will not perform a surgical termination and you'll have to deliver your baby, another option is to go through BPAS who will hopefully perform the surgical termination, I'm yet to have this confirmed by them,

Good luck xxxx
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Old 10-02-17, 12:47 AM   #5
jessipeachy
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Join Date: Dec 2016
Posts: 2
Default Re: HD & CVS Testing

Unforunately, with HD we've come to learn that there's a correlation with repeat counts and onset of symptoms, but no way to know for sure. His mother has a repeat of 42 and started showing symptoms at 50.

At 30, the neurologist has already confirmed my husband is showing movement symptoms in his left side, as well as mood changes.

Quote:
Originally Posted by coco View Post
Hi,

Congratulations on you pregnancy,

I have just been through CVS after a surprise pregnancy, my advice would be to think carefully, it's not worth testing if you are not prepared to terminate the pregnancy and a repeat of 43 is quite low in my opinion, my genetics councillor wouldn't tell me what my repeat was so I imagine its a lot higher than that,

I had CVS at 11 weeks, the results come back in a week, the cvs test itself is uncomfortable but over before you know it,

Unfortunately for my baby it was not good news and because I'm over 13 weeks the NHS trust won't do a surgical termination, I've had to look into a private clinic who will call me in a weeks time with a view to the treatment being in 7 days after that, by which time my much loved and wanted baby will be almost 16 weeks and probably moving around. This is a situation I wouldn't wish on anyone. I'm still not 100% sure I can go through with it.

I really hope the outcome is better for you, good luck fingers crossed for you, if you want any other information please get in contact xxx
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Old 11-02-17, 10:16 PM   #6
coco
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Join Date: Oct 2008
Posts: 4
Default Re: HD & CVS Testing

Quote:
Originally Posted by jessipeachy View Post
Unforunately, with HD we've come to learn that there's a correlation with repeat counts and onset of symptoms, but no way to know for sure. His mother has a repeat of 42 and started showing symptoms at 50.

At 30, the neurologist has already confirmed my husband is showing movement symptoms in his left side, as well as mood changes.
Hi,

I understand where you are coming from and you do need to take family history into account,

My baby has a repeat of 40, my grandmother (HD positive) is in her 80's, my dad (HD positive) 62 (mild symptoms), me 33 still no symptoms. We know there are no guarantees with any of this, however in we spoke to a leading specialist in gene therapy in America and he advised he believes there will be an effective treatment in around a decades time (he by no means gave any promises).

Team this information with the fact that we could not arrange a termination within a timescale we felt was acceptable we decided to keep our baby, I know not everyone will agree with our decision but it was the right one for our family, we decided to take a leap of faith.

I wish you all the best with your decision making if you ever need to talk I'm here.

Xxx
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