Hello...I just wanted to post a little introduction and then had a question.

My husband (well he will be in less than 3 weeks!) just tested positive with 43 CAG repeats. This doesn't change our relationship. I love him...he's my world, etc. etc. His grandfather died of it and his mom got diagnosed at about 45 years old. We decided for him to get tested so that we know about that baby situation...for no other reason.

We cried a little, I screamed at God a little...the shock and denial will eventually wear off, I'm assuming?

For those of you who started families after knowing one spouse is HD+, did you do IVF? Sperm donor? Adopting? We're planning on seeing a genetic counselor when school is done this semester (and after our super fun honeymoon!), but I just wanted to get some ideas of what other people did.

Thanks in advance.

Reading your posts, you guys all seem so nice. Too bad we've didn't meet under better circumstances

-JV



Edited 1 time(s). Last edit at 04/10/2010 04:10PM by TJVFamily.

HI, I had no idea HD was in my ex's family when we had our children, so when I DID find out I felt like I had been hit by a Mack Truck! Our marriage didn't make it for many reasons. Our sons are adults and have chosen to not test and my ex is not end stage and in a NH his cag was 43 and he's 60 yrs old now. I see him when I can, every few months as I love him as a family member.

You'll see all types of answers on here and all opinions. I definately would have preferred to have a choice and I am quite sure if I had all the information I now have, I would not have had my children with my husband. Keep in mind it is also difficult to be raised in an HD household. Hopefully your husband did NOT have that experience, not all do.

Welcome and I hope you feel comfortable here, Pat

We also had no idea HD was in the family until after our son was born...it was a big shock for us too..the Mack truck analogy sums it up exactly! If I had known it was in the family I would have done adoption or decided to not have children. That's my personal feelings about the matter. I try not to judge those who have made a different decission. However, I think about what if my son wasn't here because I love him so much and can't imagine life without him. But he is not "easy" and has been diagnosed with high functioning autism and ADHD. I am extremely stressed that he may have JHD, but the only thing that gives me some peace is that his father's CAG is low (altho that doesn't mean he can't have JHD, it just makes the chances less). Think through your options carefully when it comes to children. Look through some earlier posts in this topic in this web-site. People have gone through and are going through horrendous things with juvenile huntingtons and also with IVF so it's good to have knowledge and then you can make informed decissions.

We knew that my husbands dad had HD but we did not know if he or any his siblings had it. We all had children without pre-natal testing - there were many reasons but in retrospect denial played a big role. We learned last October that my husband has HD. I wresle with the guilt I would feel if either of them have it. If I had that knowledge I would have tested.

I think pre-natal testing is perfect for you! I know these are personal decisions but it seems like a no-brainer to me (that is if you don't want to adopt).

Also, you or your fiancee should read up on what he can do in terms of diet and exercise to put him the best possible place. Also keep up on the latest research - you never know when something will pop up that is suited to pre-symptomatic HD.

Good luck with your wedding and congrats!

Welcome!

Oh yes, I also meant to say welcome and Best Wishes with your upcoming marriage!

Welcome!

My husband and I found out about his at-risk status right at the moment when we had decided to have kids. The news made us change our plans to concieve naturally and now that we have his test's results confirming his HD+, we will give IVF/PGD a try. We chose to go with IVF/PGD first because I think a possible abortion will be too emotionally costly for me. But I'm willing to give it a thought if IVF/PGD fails (we'll probably take the 3 tries for the price of 2 offer they make here in Canada). We don't want to pass the gene to our kids, that's for sure, but how far are we willing to go to have HD free kids is not something I'm really sure of at this point. I really wish we could have one healthy baby (one would do it for us) but terminating a pregnancy of a viable baby is not something I'm sure at this point I would do to get what we want.

Anyway, I think each of us is different, so different solutions apply to different people.

Take care,

Luz.

Hi JV,

I'm the same as Hope2, we had children knowing my hubby was at risk, I didn't know a lot about HD as there were no computers back then.

Both our children died of JHD, one at 7 and last April my 11yr old. I would definitely be going a different way with the knowledge you have to save you the heartache of not only the worry all through any children's lives but also to avoid the dreaded JHD.

I understand it is very expensive but only because I read that on forums, I don't live in the US so don't take what I say as gospel.

I wish you well on your marriage (and honeymoon) and keep us informed as to what advice the genetic counsellor gives. Don't let them tell you JHD is rare - it's not.

Buddybird

JV-
This is a wonderful site with many good people and information. I don't know what I would do without it.

We married at 20. Neither my husband nor I knew of HD in his family. We found out sometime later. We did have two children which I wouldn't change. They are both in their 30's. I do pray they never get HD but they are glad they are here and so am I. They are blessings.

My husband started getting physical signs of HD around 45. He is now 60. His cag count is 44. He is doing well compared to some at his stage.

It is important that he stay active, exercise and a couple medications that I read about on this forum have helped him tremendously.

Of course, I do wish he did not have HD. We are still able to enjoy many things. I have always tried to maintain a positive attitude about life including HD. There are other illness in life as well and none of us know what fate has for us. I would not change my life.

Many medications are available that weren't years ago to help with HD. Hopefully, one day soon a cure will be available. Until then, it is important to stay active, exercise, eat healthy - I guess that goes for all of us as well.

I do feel very deeply for those who have had children with JHD.

Welcome here and I wish you a wonderful marriage.

Do all of us have to stay active, exercise and eat healthy even if we don't have HD?

That takes all the fun out of life. I exercise when I check the mailbox every day, I'm active when I go to the supermarket and fight my way down the aisles, I eat healthy foods like chocolate, chips, nuts etc.

If it wasn't for these forums we wouldn't have a clue about the medications available for HD people and the supplements - whether they have proven to work or not, if you feel better by taking them then I'd say go for it. My husband is on COQ10 as part of his medication, there are so many supplements and everyone can tell you what they take and how they feel afterwards.

Each individual will find different ones help in different ways, it's just finding yours and the right dosage which won't interfere with the Drs meds. People swear by them and definitely exercise is proven to help with HD.

Buddybird

Welcome TJV family.My daughter has JHD,she is 17 now.I suspected she started around just 9 years old.Take it from me and buddybird,JHD could happen!!Make the most of today's medical advances to make sure your children are not carrying HD.It maybe expensive but you carn't put a price on your children's health.Your lives would be so much happier knowing your kids are 100% safe,not 50% at risk.I wish you both well.

Buddybird-

I like your diet!! Sounds good to me!

My concern is not only for the children who are at risk, but also for the children who have to live with a parent with HD. Before adding children to the mix, PLEASE read some of the stories of these kids who grew up with HD in their family......

Welcome to the forum, this is a great site. We did not know HD was in the family until after we had 2 children, and when I tested positive my only thoughts were of my children, now both at risk. If I knew HD was in the family I would have tested before kids, and if I tested positive I would have gone the IVF/PGD route or adopted. Congrats on your upcoming wedding and honeymoon.

About what greeneyes says, I agree we need to think about the consequences of our children growing with an HD parent, too.

As it's been thrown into the discussion, I feel obliged to respond saying that I do think about it, and I do feel guilty and selfish for wanting kids anyway (my husband doesn't feel that bad because he's mother has never been that bad), but my husband and I agree that we don't want to sacrifice everything in life because of HD. I don't think we have to pay extreme sacrifices just because, unwillingly, we know the future. We did not choose to be in this very exceptional position. But the obvious question, of course, remains: are we making our children pay the price instead? Maybe... but maybe they won't feel like it is such a big price anyway because there will be other good things in their lives (damn, like a nice mom and other family members?).

And here's the thing: if they do feel we did wrong having them, I'm willing to take full responsability for our decition (my husband won't be able to do this, but I will). I will never ever respond to anyone but them, but I'll try to explain to them why we did it, I'll ask for their forgiveness and pay the price if they won't forgive me.

For the time being we're trying to act responsably not passing the gene to them and making plans to protect them when my husband starts showing symptoms; plans that, on the other hand, already implicate other big sacrifices to us, but that we hope will make things easier for them.

Anyway, I have no idea whether my thoughts on this issue are of any help to TJVfamily or not, but because I'm going through the process of thinking about all this things right now, I felt the need to express how I feel about this issues.

Luz.



Edited 1 time(s). Last edit at 04/11/2010 02:55PM by Luz.

I do understand the thought of wanting children. We also did not know about HD before kids and we now have 3. I will tell you that living with a HD+ father is far from easy. My daughter who is 15 would rather be anywhere, but home and she blames me for marrying her dad, even though I had NO idea what we were in for! Life right now is far from good and believe me when I tell you that no matter how great you think family is right now that all changes with HD. I have practically been begging for help and aside from 1 family member taking my husband overnight for 1 night there is been no other attempt to help.

Hi all.

Thanks for the warm welcome!

TJVFamily,

I just wanted to say welcome, congratulations on your soon to be wedding day, and have a wonderful honeymoon!

Brett T

Yes, nice to "meet" you, but sorry for the circumstances.

I tested in February, with 43 CAG repeats too. Yes, for me/us the shock has gradually diminished.

I won't say the denial has diminished because I still have a lot of hope for supplements to help me hold this off as long as I can, + maybe even new developments to virtually cure the disease by then (there are like 10 different things in the pipeline including Huntexil that I'm most excited about; ANY of them could be "IT".

My husband has been great. We're 32 & 35; we've never had plans for our own kids, but always have held a remote chance of fostering or adopting. Adoption stories have always made me cry. But I think others here will tell you about the other options.

Best wishes with your upcoming wedding!

welcome to the forum . I have been married 36 years .We waited 5 years before our first child. If it was me , I would not have children nor make any decision regarding children for at least 2 years . Settle into the marriage , see how you cope and he copes with day to day married life . Then decide . When making that decision , think of all the possible outcomes . Included in those outcomes , if you had to take care of your mate and your children , and maybe even work . Could you handle that ? If the answer is Yes, that is good . But you need to ask yourself that type of question . If the answer is no , then , you and your hubby , can fill up your life with other things . Many people have great lives without dealing with teenage curfews . all my best . db