Hi there,

Im 27 years old and live in New Zealand, i have just be tested and have a positive result with a CAG of 42. My Husband and I want to start a family, we know our options, but we just don't no what one we want to take?

Jojo,
I am so sorry about your positive result!
I'm glad you found this board so you can get support for yourself.
Laura

I'm so sorry about your positive result, but so glad you're using it to plan for your family, good for you. You did a very courageous thing. Well, which options are you leaning towards, and which ones are you uncertain about?

Welcome. I'm sorry about your positve result and wish you a good journey on your decison to plan and raise a family.

Paula New Jersey USA

Good to meet you. Sorry the responses took so long but a lot of us are in the USA and we are sleeping when you are getting up. I too wonder what you are leaning toward. How long have you had your results? BTW, you have the coolest country. If I had a windfall, that would be my first place I want to go.

Hey jojo, you are not alone. I'm 33, and found out I have CAG 43 this past year. Though children have never really been part of our plan, I'm sure you'll get replies here soon from those who've made various choices. I'm sorry you're going through this, but so glad you've found this place. How are you doing emotionally, besides this question?

Hi JoJo -
Welcome. So sorry to hear about your results. There are a few people on this forum that have first hand experience with these issues - I am sure they will chime in eventually. As the parent of 2 at-risk children I can tell you that you are doing the right thing by learning what you can and taking steps to avoid having children who are at-risk. Good luck!

Welcome JoJo!

In our case, it was my husband who tested positive this year, also with a CAG 42. We also thought about the best choice for us to have children, and we decided to give IVF/PGD a try. Now I'm happy to report (even though it's a little soon) that I'm pregnant after our first try.

IFV/PGD is very tough. It's tough on your body, it can be very expensive but most of all, you risk the chance of having nothing to transfer by day 5 because of a circumstance that you cannot control even if you're young and in good health: that you might lose all of your embryos to HD. In our case, as lucky as we were to end up with 8 embryos by day 5, only 2 were negative. We could have lost them all, and that has happened to other people.

It's easy for me now to say that IVF/PGD is the best choice since it worked so fast for us, but you must be ready for it to fail (once they tranfer your embryo/s each of them has a 50% chance to implant, but only if they're good quality).

Anyway, that's been our experience, but any other questions that you have, I'm here for you!

Luz.

i am so sorry for your news. thinking of you.

So sorry to hear this news but wishing you the very best....

Sorry to hear this...but you've come to a good place where you'll get 'lots of support from those who've been there.

Thanks-you everyone for your kind words, its nice to hear people in the same situation as my family and I.

I have known my results for 2 months now,and am trying to decide what we want to do, I have two younger sister who have not been tested and I think they are waiting to see how it works out for me.

Here in New Zealand we do get free goes at IVF/PGD, but it does seem like a lot of hard work/pain and stress. But i do agree with you Luz it would be worth it in the end if it works out (and congratulation to you, it's nice to hear of a person having a positive out-come for IVF/PGD).

Luz- how long did it take from when you decided to try IVF/PGD till now, having the positive result?

Im thinking of trying to get pregnant naturally then getting the embryo tested. It seems like a easier option at the moment for us, but the only thing im worried about is when this happens, i might not want to get it tested!

My 3rd option is just to get pregnant naturally, and not worry about the HD, I had a very happy childhood/live so far, and I grew up knowing my grandfather & great aunties had HD, and my mother was at risk. But I don't want to leave my Husband with kids at risk, it's hard enough watching my Dad lose my mum, then having watch us kids get tested.

Thanks for listening to my story

P.S. Yes Eric New Zealand is very pretty, it would really be worth a visit, if you are into your outdoors stuff.

Thanks
Jo

Hi Jojo -
I am so glad you are looking at all of your options. It is a very personal decision and it is so very complicated there may be no right or wrong answer. But my personal experience as a mom of 2 at-risk children is that I would do anything to know that they were not HD+. We knew that my husband was at risk when we started having children but it really wasn't affecting our lives at all at that time (we didn't know much about it) and I regret very much not ensuring that my children did not have HD. I do believe there will be treatment or cure by the time they develop symptoms (if they are HD+) but they will still have to go through the same decision process that you are going through to protect their children. There is also JHD which is more prevalent than I had realized and many people on this forum have had experiences with that. I am not trying to scare you. Just tell you how it has been for me. I have the most amazing kids in the world (sorry everyone out there who thinks that you have the most amazing kids in the world) and I am so scared that one day they will have to cope with this disease. It is an awful feeling and there is nothing that you can do about it...
Thanks!

Jojo,

My husband tested positive on january, but by that time we had already decided to go through IVF/PGD if he was positive. To me, having children at risk was never an option... I just knew I wouldn't be able to respond if my children one day asked me why, having other options available, I decided to have at risk children anyway.

Testing on the womb is a good option if you feel ready to abort if the test comes back positive or if you feel ready to go on with a pregnancy and raise your child knowing his or her future. Personally, I wasn't comfortable with this option because the results aren't immediate and you might end up having to consider an abortion when you can already feel the baby growing (and now that I'm pregnant I can tell you I already feel so many things than the thought of an abortion scares me to death). I did, however, considered it a good second option if IVF/PGD prouved to be too much after a couple of tries.

So, after we got our results, the genetic counsellor told us to consider taking some time off. We took her advice and went to see her a couple of months later to discuss all of the options.

For the reasons I've explained, we felt more comfortable going ahead with IVF/PGD. So, she referred us to a PGD doctor. It took some months before our first appointement with her on june (they're very busy since they're the only lab in Canada that does PGD).

After that, they started preparing the test... the test they perform is not the same they do on adults to test for HD. Because they have so limited time and a very limited amount of DNA material to work with, they need to prepare a special test. So, they take your husband's and your blood samples and, ideally, blood samples from the family members of the HD+ person. Preparing your custom made test can take some months. In our lab, it only takes a couple of months, but our case was a little bit more complicated because my husband doesn't have any family in Canada. So, they ran some additional tests that took extra time. Finally, by the month of september they called us to tell us they were ready for our case. So, they prepared my IVF protocol for the months of october/november.

The whole process took about 6 weeks: four weeks for the suppression and stimulation phases (lots of needles and scans), then Egg retrieval on november 6th (the scary part, but not so bad) and transfer on november 11th (a five minute procedure). The hardest part for me was waiting for the PGD results: we only got them 5 minutes before the scheduled transfer. Also, for 48 hours we had no idea how many embryos had even survived (making it from day 3 to day 5 is very had for the embryos). We got our pregnancy results on november 22 (but you can cheat and take a home pregnancy test a couple of days earlier, like I did).

Fun fact: your pregnancy lasts 15 days less. My egg was only fertilized a month ago but I'm on my sixth week.

As you may see, it does take some time. Now that the treatment is also free here, I'm sure it takes even longer (we got lucky because we only payed for PGD and that gave us priority, but then they passed the law so we didn't have to pay anything else). So, I imagine it might take some time over there in NZ.

So, like our genetic counselor told us, there isn't any good or bad choice. You need to make the choice you're most comfortable with. That's exactly what we did and got lucky because it paid off.

BTW, I'm also from the southern hemisphere (Argentina) but can't escape from the winter this time. I'm going to miss spending Christmas in the summer this year!

I wish you the very best, and if you have any other questions, go ahead (you can also write to me in private).

Luz.

The reason I asked about when you got your results is that it takes a while to acclimate to them for both of you.. you and your husband.. and maybe let the results sink in a little bit. It really does take a little while to get comfortable in your new skin so to speak, and even more time for your husband to know how you have settled into it. I am sure for the moment he is looking for cues to what is going on in your mind, and be supportive rather than honest about what he thinks, or hasn't really taken the time yet to know what he thinks. And you sound a little all over the place understandably. I understand you don't want to take six years deciding... but six months is ok to do it right. You don't want to spend time second guessing.

From experience here.... the people who second guess the least are the ones who know they have had an HD free baby. I have two at risk kids... one kid is 20 and I can tell right now... a happy childhood becomes meaningless if I have to watch them have HD too. Even at 30 or 40 they are going to be my most loved people. They are still my children and I don't want HD to be their fate. And I do second guess what me and my wife did. My wife won't be here to watch the next generation of HD.. I will, and your husband would. It turns my stomach thinking of them where my wife is now and all the years before. If implantation works, trust me, there is nothing you will thank the stars for more than that baby without that gene. It's gut wrenching imagining the other. It's so different loving the idea of a child and actually being in love with people they became.

But none the less... you gene status is very new to you... think about you and life a little bit before you make decisions about other lives. I think some of the fog will lift with a little time.

Jojobeano...
My situation is exactly like Luz's. I am also from Canada and had IVF PGD done the end of April, first of May 2009. We have twin boys that were born in early December 2009 (yes, if you do the math, they were born 7 weeks premature). I knew this was the only option for us because my husband did not want at risk children (neither did I) and I knew I would not be able to abort (100% confirmed once I was pregnant). We also got pregnant on our first try. I agree with Luz, the drugs are hard, but well worth it. I don't know about Luz, but my bum was numb for months afterwards because of all the needles my hubby stuck in it! We laughed about the black marker marks they had drawn on my bum and he kept drawing so he knew where to stick the needle. In the end, we look back and realize the drugs were only a few months of hassle!
I look at my boys now that are a year old and I feel so blessed to have them. I can't imagine them being at risk or having aborted them if they had been HD free. I also agree that I can't imagine having my child ask me why I would have the at risk when there are options available.
Feel free to PM me if you want anymore information.
Best of luck with your decision!

Welcome! I am very sorry about your positive result but you found a lot of wisdom on this board!

Hi Jojo

I'm from NZ too! I'm 25 with a CAG of 45. I had an appointment with Fertility Associates a few months after I got my test results to find out more - I was told the waiting list wouldn't be long and it would only take 6-9 months for the whole process. I'm definitely going to go down the PGD road, we are so lucky that we can get up to 2 cycles free here and to me it would be so worth it to not have to worry about our kids in the future. Sometimes I wonder if I should just do things the natural way because I do believe there'll be a decent treatment in the future but then again you never know...

Justine

Sally: yes! I'm so tired of the needles... but I found out that applying heat after the shot helps you with that. That's been working miracles for me, but it's still hard and I can't wait to be done with the shots.
BTW, congratulations on the twins! Must be a lot of work!



Edited 1 time(s). Last edit at 12/07/2010 08:52PM by Luz.

THANKS everyone for sharing your stories, im glad I posted a message so many replies and it's nice seeing HD through different peoples eyes..

Hope2 - You message opened my eye's, the whole reason i got tested was to stop the HD in the family, if I went ahead and just had children I will have to live (with worry) about this decision. My parents waited 4 years once they got married in hope something would come along to stop them passing the gene before they had children, but the same options that are available for me, they didn't have. I do believe there will be new technologies around soon.

Luz & Sally, thanks you so much for telling me your storys, you are amazing for going through the IVF/PGD for your husbands. There is only so much that dr's can tell you about the process, it's also nice to hear people who have had a positive outcome to IVF/PGD. My specialist is very negative about the whole thing.

Eric - I loved your message (it made me cry! lol). You are right i think i do need to take a bit more time to let things calm down, and not to rush into something I may regret. I have been thinking about HD my whole life, where it's all new to my Husband. It was very hard telling my father that I was HD positive, he was very upset, the more i think about it the more i don't want to worry about my husband being in the same boat. It's true I want a baby, but a HD free baby would be even better, I need to slow down and re-think, it may take longer but it will be less worry for me and my husband in the long run. It's nice hearing what you said through a parents eyes. thank-you

jayb - Where in NZ do you live, I have been referred to the Fertility Associates. But have not yet gone and talked with them.

Summer Christmas are the best, Sunny days with wine and cheese on the deck!

Thanks everyone

Jo.