Hi to all-

In a recent post a lot of the "at riskers" mention that they would/will test when their children are ready to have children.

I know from my own personal expierence that it is possible, once our children are a certain age, that they could have children out of wedlock. So I am worried that it may not be possible to plan to test before grandchildren are born.

My question is that my daughter is turning 18. I've asked her if she plans to test and she says nothing is further from her mind. She states that she wants to go through college and wait until later in her life to have children.

While I belive that is true, as I stated above, I worry that life does not always go as planned.

I did/do want to test before she is faced with the decision (to test for me). But I am not ready in any way to test at this time. I am already facing some other issues and think it wold be too much at this time.

What do you all think? Am I being a worry wart?



Edited 1 time(s). Last edit at 12/19/2008 01:55AM by TracieT.

Hi Tracey - life doesn't always go as planned, but your own testing will not prevent your children from having an unplanned pregnancy! If you are not ready to find out one way or another, then don't go down this road - at least not yet. There is no 'undo' button on this one, (nor in pregnancy!) As long as your children understand the risks involved, then they will take whatever precautions they will, regardless of their HD risk being 50% or 25% or 0%. Do you really think they would be extra careful if they were at a higher risk? If they really want to know for their own future planning, then they have the choice to find out themselves. Trust that you have done the very best mothering job that you could possibly do, and let them demonstrate what wonderful young adults they have turned out to be. There will be mistakes and blunders along the way, I certainly have made my share! But it is beyond your control now - you have to hand over the reigns and trust that you've done a good job, and hope and pray they will take the right path. This is the hardest part about parenting, but it is time to let them make their own choices in life, and you will be there for them no matter what happens!

There is of course no "undo button" for HD. That's why ignorance of one's risk status does not alter it whatsoever. Either you have the aberrant gene, or you don't.

Choosing not to "go down that path" of testing has no effect whatsoever on your present or future testing status - and has no effect on your children's chances of inheriting it!

That was determined at the time of conception.....

jl



Edited 1 time(s). Last edit at 12/19/2008 09:09AM by jl.

My Dad didn't know he had HD until he was 68. It was undiagnosed in my grandfather so we didn't know it was in the family. He had six kids and most of his kids had kids, before he was diagnosed. We have all had very fulfilled and blessed lives. Most of my siblings are in their 40's with one in the 30's. None are symptomatic. I'm the only one who has tested.

If there had been testing before my Dad was a parent, and he had tested and decided against kids, none of us would be here. He might have also lived his life in fear of the future instead of enjoying his life in the moment.

I guess my point is that if your daughter can life her life with HD pushed to the back of her mind for now, that is wonderful! I would not worry about unplanned pregnacies, she (and you) might not even carry the gene!

I know it's easier said than done to not worry, but if you can, it would be less stress which is always a good thing.

Patty

With all due respect - one's HD status is determined at conception. The choice as to whether to be AWARE of that status has no effect whatsoever on what ones status actually is!

Puting off knowing merely POSTPONES the necessity for deaing with HD. If you have the aberrant gene - you WILL be forced to deal with it eventually.

Knowing merely allows you to deal with it more proctively. It's my nature to deal with things proactively. I've been fortunate that I've made that choice.

KNOWING that you've inherited the HD gene is not necessarily devastating. It depends on your approach to HD.

I knew I was at risk, all my life. Thus, I've lived in fear all of my life. I'm a realist. I can't even imagine that any denial of my HD-status would in any way reduce (or even delay) the fear.

I was at risk. Fear was a constant part of my life. Turning my back on it would not truly REMOVE the fear. Even temporarilly!

I knew the odds. Being at risk, I either had the gene, or I didn't.
And if I did - I WOULD have to deal with it, sooner or later.

I prefer sooner - when it comes to issues which are inevitable.

Knowing in no way effected my quality of life, in terms of living each day to the fullest. It only allowed me to take care of some practical issues that needed be taken care of.

They needed to be taken care of, regardless of my choice to test. My choice to test merely provided the opportunity to make informed decisions.

I like informed decisions.

I guess I just don't get why any HD diagnosis could have an effect on one's decision to "live life to its fullest"!

That's advice I give to EVERYONE - no matter one's HD status. I would give the same advice to people who are NOT at risk for HD!

Why would anyone do less? I have greeted each day with joy and wonder. That's why I'd not think, "Oh, I wish I'd done that!" - if I were to die today!

I've pretty much done it!

I recommend to everyone that they do that. No matter their HD status.

Personally, I've found that the knowledge of my HD status has been empowering!

jl

Tracie, you know, that was very well-written what Jl said to you. I know nobody can make this decision but you, but i cannot even imagine living with the fear of the unknown. I've never let fear rule my life, whenever i have had fear, i've made it my mission to be the one in charge, not fear. I guess for me, my biggest fear is always fear of the unknown. So the more i find out about a sitation, the less scared i am. I've always found it hard to understand how knowing less about the unknown can relieve fear in some people, but i realize we all deal with fear in our own ways. But i also know that you have to wait until it is right with you, and you are comfortable with testing. I do wish you the best in this, and hope you're able to find some peace in this soon.

Tracy.. I'm not telling you to test... but I think the closer to the reality to HD a person is the more likely they are to take it seriously. My son who is also 18 and who's mom is in the NH doesn't find HD the farthest thing from his mind. I do find that that people who are 50% at risk ask more questions than those who are a couple of generations removed from it. Even I, who know the ramifications, take some comfort in the lower odds. I know I shouldn't because a 12.5 % chance of HD is still a gamble. I am personally hoping that my kids take seriously the odds until they know for themselves their status. Pregnancy can be prevented, but to what extent a person goes to prevent one can vary according to their reasons for not wanting to be pregnant.

I again am not saying to test. I do think I see your concerns and find them valid. To what extent a parent needs to go to emphasize how serious this is, is kind of up to you. My wife showed signs of HD in her late 20's so I tend to find it fairly important in our case. People who's families present in their 50's and 60's have a different take. They haven't seen a person actually attempt to parent while symptomatic so they tend to minimize the disease and the ramifications of it. When jHD is present in the family line things get even more serious, and those people will find testing for future generations benefit very important to the point of being a duty. I do think that frank discussions about HD are fair at least. Maybe if you two really talk it through, she can assure you that she does take things seriously enough that she won't take risks until she has as much of grasp of HD as you do.

Look on the bright side of things...all this worry might be for nothing and HD might have ended with your parent.
Enjoy life!