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

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Old 15-08-17, 01:45 PM   #1
Terentia
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Join Date: Aug 2017
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Default Experience of PGD?

Hello everyone.

I have just received my positive HD result and we are now hoping to proceed down the PGD route. I was wondering if anyone had any advice or experience that they would be willing to share with me?

In particular, I am keen to understand what sort of timeframe (and hurdles) to expect along the way. I am quite anxious as a I am 35 and currently have no children.

I want to be able to give it my best shot (currently on a diet to get my weight down!).
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Old 21-08-17, 01:55 AM   #2
Ange<3
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Default Re: Experience of PGD?

Quote:
Originally Posted by Terentia View Post
Hello everyone.

I have just received my positive HD result and we are now hoping to proceed down the PGD route. I was wondering if anyone had any advice or experience that they would be willing to share with me?

In particular, I am keen to understand what sort of timeframe (and hurdles) to expect along the way. I am quite anxious as a I am 35 and currently have no children.

I want to be able to give it my best shot (currently on a diet to get my weight down!).
Hi sorry about your positive test result. I have also just received a positive result recently it's a bit of a bummer isn't it! Im sorry as I have not had PGD myself but noticed you had not had any replies and I have been looking up on it a lot as hoping I will be able to have it done myself in a few years. My brother and his fiance however has just been referred for PGD (he is not sure if he carries the gene). There is a slight spanner in the works though as we have lost both our Mam and Dad (Dad had huntingtons) and they are unsure if they can do it as apparently they need blood from them both but are looking into it. I've read a lot of mixed things on here if I'm honest it would be nice to see a few more success stories. Also I have read a few stories of people saying the appointment to actually start PGD has come quicker than expected so fingers crossed you will get something soon. Keep in touch and let us know how your getting on! Best of luck x
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Old 21-08-17, 01:59 AM   #3
Ange<3
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Default Re: Experience of PGD?

Ive been looking at this blog tonight unfortunately the PGD didn't work but it gives a really good insight into everything.

http://survivinghuntingtons.blogspot.co.uk/?m=1
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Old 21-08-17, 12:24 PM   #4
just1moreperson
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Default Re: Experience of PGD?

Hi,

My wife and I went through PGD last year and were fortunate enough to be successful on the 2nd attempt. We now have a HD free 2 month old baby boy. I can only speak for our experience at Birmingham Women's Hospital, after our initial appointment with the Dr to discuss what's involved in the process it took nearly a year for us to then start the 1st attempt as they were busy. It might be different at your nearest clinic, but if you want to get started I would suggest being as quick as you can. Once we started the process it was super quick, 2 weeks of daily injections for my wife and plenty of visits to the Hospital for checks, be prepared to take time off work for the appointments. We had the emotion of not succeeding with our first attempt, but we knew there were 2 more to go so we were able to pick ourselves back up and our 2nd attempt started a few months after the first ended. We got more eggs on the 2nd attempt (15), then we had 8 embryos left which were sent for the genetic test, only 1 was good after that. We felt quite down that we had only 1 embryo left but they said it was a very healthy and strong embryo which had been growing nicely in the lab for those days and so it proved to be as a couple of weeks later my wife did a pregnancy test and got the good news. Fortunately the pregnancy went ok for us and our little baby is now here and we are adjusting to being parents for the first time. Not everyone is so fortunate, we are very aware of that. Go for it but be prepared for a rollercoaster ride of emotions and have a plan b or indeed c if IVF PGD doesn't work after 3 attempts.

All the best
Matt
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Old 22-08-17, 07:37 PM   #5
LECS
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Default Re: Experience of PGD?

Quote:
Originally Posted by Terentia View Post
Hello everyone.

I have just received my positive HD result and we are now hoping to proceed down the PGD route. I was wondering if anyone had any advice or experience that they would be willing to share with me?

In particular, I am keen to understand what sort of timeframe (and hurdles) to expect along the way. I am quite anxious as a I am 35 and currently have no children.

I want to be able to give it my best shot (currently on a diet to get my weight down!).
Hi I have no experience of PGD but I wanted to say how very sorry I am to read that you have received a positive result. I hope that you get the information that you need. Best wishes Lily.
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Old 03-10-17, 01:23 PM   #6
jacqueline
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Default Re: Experience of PGD?

Good luck Terentia
I love it when a baby is born HD free..
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Old 08-11-17, 01:55 PM   #7
Jomhv
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Join Date: Nov 2017
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Default Re: Experience of PGD?

Quote:
Originally Posted by Terentia View Post
Hello everyone.

I have just received my positive HD result and we are now hoping to proceed down the PGD route. I was wondering if anyone had any advice or experience that they would be willing to share with me?

In particular, I am keen to understand what sort of timeframe (and hurdles) to expect along the way. I am quite anxious as a I am 35 and currently have no children.

I want to be able to give it my best shot (currently on a diet to get my weight down!).
Hi my husband (who is hd+) and I first attempted pgd in 2002. It took 4 attempts and many tears and in 2004 when I was nearly 36 we had our first daughter. We tried again in April 2005 and in Dec 2005 we welcomed 2 more daughters. Its a while ago now and I'm sure the technology has gotten even better than when we did it. These are a few of the issues that caused heartache at the time that I wish someone warned me about.

We were told that after 6 cycles X% (can't remember the figure) get pregnant. No one thought to tell us that 1 cycle takes around 4 months. I stupidly made the assumption it would be a cycle very similar in time to a normal menstrual cycle. When your biological clock is ticking very loudly with every passing month it was very distressing to find this out. It felt like so much wasted time.

I was lucky enough to produce a lot of eggs without going into ovarian hyperstimulation. I would average 25-35 each time. On my second failed cycle we had about 20 eggs fertilise and be available for PGD. Wow we thought. Even if this cycle doesn't work we will have some to freeze and use next time. It was completely devastating to phone to get the results of the pgd testing to be told we had only 1 for transfer. Apparently the genetic testing machine could only run 7 tests at a time. They had discarded the other 13. I asked why on earth they hadn't told me this would happen and the answer was we haven't had anyone with this many before (it was very early days using the technology) so it didn't occur to us. Out of the 7 we had 4 positive 2 inconclusive and 1 negative. I think this was one of the lowest points in the whole process.

After our 3rd failed cycle I started hunting for an egg donor thinking I must be too old (and yes I was getting desperate). My doctor though, said she thought they had been overdosing me which can affect egg quality so they cut the dose of medication by a third. Doctors can tell by looking at an embryo if it is likely to result in a baby. If there are lots of broken fragments I think that is a bad sign and my embryos had had these. From memory we got less eggs, about 20 this time. Most of them fertilised. The problem however was that 7 days into my cycle of administering the drugs to stimulate egg production I got a phone call from the hospital to say they would have to cancel this cycle as they couldn't get the HD testing kit to work. I said well don't you have another one? No. All 3 from the same batch were faulty. Can't you order more in I said? No. It's Easter. Next Friday is also a public holiday. The company that produces the kits has closed for the whole week. Cancelling the cycle now meant wasting another 2-3 months. Completely devastating news. We decided to proceed with the process as a normal IVF cycle. I just wanted to know if I could get pregnant. I did. Was a happy yet incredibly stressful time. We did a cvs at 11 weeks and waited 3 weeks and 2 days for the result. My daughter came back negative and is now nearly 14. It felt like some sort of miracle the day she was finally born.

When she was 1 we started thinking about a sibling for her and so started the whole process again thinking we were running out of time. I was 37 and we were prepared for it to take a couple of years. After PGD we had 2 that looked really healthy so they got me in a day earlier than normal as they thought they should be where they were supposed to be ie in utero to give them the best chance. We couldn't believe that we were pregnant this time. My hormone levels were really high so I think I kind of knew we were probably having twins but to have it confirmed was amazing.

To go from such lows and despair to having 3 children under the age of 2 has been an incredible life experience. I often look at them and think how did I get so lucky? I truly believe the struggle has made me a better mother than I perhaps would have been. The hard times just fade away into insignificance when I think of what could have been if we hadn't gone through this process. This devastating disease stops with my husband.

I wish you the best of luck.
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