Judy, I read this after your PM and you got the softer version of this.. No matter how good we think our kids are, they are fertile. Facts are facts. Any number of unfavorable circumstances can lead to grandchildren... who might not happen if our "child" had the understanding of the status they may possess. A thoughtless evening in a dorm room might not happen so thoughtlessly. I do think there is a point where they need to be considered out of childhood and not decide things by thinking of them as still in childhood. They are deciding careers and faced with decisions that are all more to do with adulthood than childhood. It's one thing for a a 10 yr old to have happy Christmases. It's another to be a father or mother and on what terms. I don't have an age that is best... I do think there is one where telling v. not telling becomes harder to justify as future generations come into the picture. I do think there is some point where one can justify the happy childhood line of thinking. But there is is a point where that compassion of not saying anything becomes a family's dirty little secret. I do know of too many people who have said.."had I known, I would have had the choice of 'this or that'". And they are very resentful of the person who said nothing. I think a lot of dysfunction in HD families can be avoided just from everyone being on the same page and working through issues as a family in supportive ways.

Zandra, in my postings, i don't think i've told you how sorry i am about you losing your husband. I'm sure you havent had an easy time with this at all. I think you may think it's just some of us oldies here giving you this advice, but actually, some young people have also spoken up. I think everyone has tried to show you, why things are the way they are. I think, when a day comes, that they can cure hd, even before symptoms arise, then, that will be the day that these types of guidelines will change. Right now the guidelines are there for a reason, to protect the rights of the child. I know you want to prepare your daughter for hd, if she should have it. All you can do, is be honest with her, right from the beginning. Begin telling her about her daddys illness, and as she gets older and asks more questions, answer her questions. Let her know, that she is at risk, but that there is hope for a cure. Let her know, that because she is at risk, she may want to plan her future with life insurance in place, that she will want to be careful and give a lot of though to having children, and that she will need to decide at what point in her life she will be ready to test. The type of guidance that you wish to give her should she test positive, is the same type of guidance you can give her, by letting her know her at risk status, don't you think?

Zandra,

I had it done. I know how to do it. I got the results.

Pm Me if you want to find out how it's done.

Fred, is it something you regret doing now or are you still happy you made the decision to have them tested?

I have mixed feelings about it. But I made the decision, it was a good decision at the time, and I stand by it. It's not for the weak of heart, I'll tell you that.

Fred, how did it help?

jl

It helped me help him. And it will continue to do so for the forseeable future.

Does he know his results Fred?

[www.hdyo.org]

How? What did you advise/do differently from what you would have done for an at-risker, as opposed to a diagnosed PHD?

jl

Eric,

I'm not saying that I don't plan on ever telling my kids that they are at risk. Although, my 2 oldest probably already know. I just want to wait until they are at least 18. I also plan to advise against testing for the many reasons that people have stated, like the insurance issue. I don't want my 3 year old son going through his childhood always thinking that it could happen to him. I do want my children to know before marriage and kids so that they can make wise decisions.

Dearest Judy - "marriageable age" and "sexually active" are two different things..........


jl

jl

I do realize that. I guess everyone just has different views. I know how angry and depressed I've been, I don't want that for my kids any sooner than necessary. They deserve to have a worry free childhood.

Judy, I understand where you are coming from.

Well, that's certainly understandable and supportable, Judy.

How about THEIR potential children?

jl

I will make sure they are aware before that happens. I don't want for them what I'm going through. My husband and I didn't know what HD was until he was diagnosed so we never considered not having kids.

good answer!

jl