Hi everyone. I know I mentioned on another thread that I just recently learned my husband (ex but we live together and I am the caregiver) has HD. He has both emotional (anger,irrational) and physical symptoms (slurring, balance, dementia). My world has been a whirlwind of doctors and applying for disability,and talking to lawyers. I have two children. My daughter is 20 and my son is 16. I am extremely close with both of them. I would like to know the experiences you have had with regard to telling your children or if you are the son or daughter being told. As strong as I think I am it is this aspect that troubles me the most and brings tears to my eyes. I am their emotional rock and always have been. I know that we can deal with this together. Just looking to learn from other's experiences. They are two very well adjusted happy kids. They do very well in school and sports and have lots of friends. They have had to weather their share of storms with dealing with some of the emotional issues brought on by HD. I know everyone's road is different but I would like to hear your stories. Thanks in advance.

I too will struggle with this. We also never knew HD was in the family (found out when my son was an infant). My son is still young, but I don't want to lie to him or make him feel as if this is something to be ashamed of. However, I know I need to balance that with the fact that there likely still is prejudice about HD (such as insurance issues, job, school etc) that he will need to think about who he will share this info with. He also has been diagnosed with autism (very high functioning) and ADHD and those are 2 other things I haven't mentined yet. In the case of those, I will try to find a positive way to explain these. However, I can't think of anything positive about HD, but I also don't want him to freak out knowing that he is at risk so I will have to think carefully about how to tell him.
Here is a site that might be good:
[huntingtondisease.tripod.com]
and I'm sure there are other good places to help. I'm not ready yet, but I've heard it's better to let them know as soon as you think they can understand and are in a good emotional state.



Edited 1 time(s). Last edit at 07/21/2010 12:50PM by eve.

I think you should be honest with them.

My sister rebeled when she was 13 or 14 because things at home were bad. My mom wanted to kill my dad and things just got worse. She didnt know at the time mom was sick. So she did her thing but because everything at home was too much and too crazy.. but now thats she knows about mom it all makes more sense to her. Yes there are days that shes depressed how not having a normal life but she blessed.. they appreicate life so much more.

I can't say exactly what impact the knowledge has had on my kids. They seem pretty ok. One son is 20 and has know about his risk since he was 10-11.. and the other who is 14 from a little younger. With all the family that had HD it really wasn't avoidable to tell them. Not telling them at this point just means risking passing on the gene to yet another generation. They need to know this fact. I can't make them not do that, I can suggest what I would consider responsible. If you wouldn't want this for your worst enemy, then you really don't want it for your kids and grandkids. While I would have loved to think my kids are pure and virginal, and am sure the younger is... one has to plan for the worst and hope for the best sometimes. How can they decide what they want in their lives without knowledge to make it so? I know I couldn't, and wished I had known. I also have known partners of those at risk who were not told by the families, even as the spouse grew sick. I am sure you wouldn't do that.. but some have... probably because the "secret" got that big.

20 is old enough. I think by 18 they should know all they need to know.

Below that depends on the situation IMHO.

No one knew HD was in the family til my FIL was diagnosed in his late 60's. I knew then what my then husband had. We told our kids grandpa had a neurological disease, they were in about 4th and 6th grades. A couple years later Joe was dx'd. I felt I couldn't tell them until I had a grip on the situation and could talk about it without becoming hysterical. Their Dad soon went on disability and that had to be the time to tell them. WELL, seems they learn about HD in school, was I ever shocked to hear that.

will say this, no matter how quiet about it you think you are they WILL hear you talk about it. I remember one time Joe and I talking before we told the kids, we thought our kids were upstairs, and we heard.. "HELLLLLLLO KID IN NEXT ROOM". It was my oldest listening and obviously he didn't want to hear more just yet. Now they are 29 and 26 and go see their Dad in the NH and how I wish they never heard of HD but that's impossible.. they have not tested nor do they want to. No kids for them ever, and they say they will test if they are symptomatic. I hate this disease and the fact that my kids have this worry hanging over their heads. Pat



Edited 1 time(s). Last edit at 07/22/2010 04:59AM by mrspatwolf.

I don't respond to the forum often, I'm still trying to wrap my head around the HD thing. But I want to thank Eric & Pat for their insight into children. I LOVE this forum I read it every day & it keeps me grounded and helps me know I'm not alone. When I feel defeated & have questions someone else is dealing with my issues and has a way for me to deal. The questions of kids (young adults has often been a question for me. I have NO children at risk but I do have a nephew. I have wondered about the reasoning of having children if HD is in the family. I understand if you had no idea before the children arrived but if you know the risks why have kids. As Eric put it if you wouldn't wish this disease on your worst enemy why would you wish it on a child? We can all hope for a cure but in reality I believe that is far off they have been trying to cure cancer for a lot longer and with a lot more resources.

If you want children isn't it wise to have the test &/or do the genetic testing? I understand it is expensive & can be heart breaking but isn't it less expensive and heart breaking than passing the gene to new generations? I am the person who will talk to this nephew about HD as no one else can. I am anticipating all the questions he will have and trying to gather rational logical answers to said questions.

It would be nice if no one had to deal with this situation but avoiding the unpleasant (continuing the disease in a family) and keeping a head in the sand (my kids won't get HD) is not realistic. I must talk to the nephew soon as he is 14 & I'm afraid he won't be "virginal" LOL much longer) Hopefully he will keep things under wraps until he can be tested. But I believe of the 2 children my MIL had both have HD.

JeanE,

We found out that HD was in the family after my children were born and they were kinda young when he tested. once we had the results we both sat them down and told them. We gave them the basic info and let them ask the questions....surprisingly they asked some pretty important questions. There were a couple of reasons for my decision to tell them, first my husbands relationship with his dad as a result of "HD" was horrible. Bills dad left when he was young and he and his brother had a lot of anger as a result of an illness they never knew existed. I really wanted to be sure that they understood the behaviors and changes had a name and were not a choice. second I saw what that lack of knowledge had done to there father. They both saw a councelor at school following the diagnosis, my younger one for a very short time, and my older one still does on occassion. But I must say that they are both very understanding of there father perhaps sometimes more than me, and pretty well adjusted, social, active kids.
My main concern for you would be that the longer you wait the harder it will be to tell them. In the end the choice is truely yours but from experience I know what that lack of knowledge has done to my husband.

Good luck to you
Francine

Thank you to everyone for your input. There is no doubt I will tell my children I am just preparing for the emotions and the questions. I know my daughter's will run the gamut from the disease itself to its impact on having children. I will try to remain positive and give her advice with regard to testing, adopting, genetic planning. She is pretty emotional and I am sure it will be a difficult discussion. Mrs. PatWolf thank you for the glimpse into how your family dealt with this. Eve like you I don't see anything positive about HD but there are positives in being able to live each day. A few years ago I had cancer, I remember asking for five more years to see my kids grow up. While I am cancer free, the time made me focus on each day. I have always been the planner focusing on years out not so much the here and now. That change has helped me deal with the HD diagnosis in a more positive way. I hope I can show my kids that while some dreams may be altered, some plans changed, they are given the gift of today. I try to have the same attitude with their Dad and focus him on what he has not what he may or will lose. My only fear is that I lose the ability to be positive because I know if I am not then everyone will fall a bit. Again thanks to everyone. Fred and Eric I am a newcomer to this site but I can already see what a source of support you both are to many on the various threads-I have really learned a lot from your messages.

It's NOT expensive. The actual cost is a doctor's visit and about $350. Now correct me if I'm wrong; Some doctors follow more protocols than others. Some will put the patient through counseling. Others will just run the test.

Francine-I am definitely taking your advice to heart. Very helpful to hear the perspective from a parent having to tell and the child (your husband) not knowing.

Fred,
Do you know of any drs around asheville, nc that will do just the blood test? How would a person go about finding one and one that would do it anonymously?The Genetic Clinics here want to do the full protocol and it would b at least $1000. My two sons would like to b tested to decide if having children would be an option for them.
Thanks,
Melissa

Try your family Doctor. Anybody can order the test.

Is there a Huntington's clinic near you or a Center of Excellence. They can help. Also if you go to your doctor I don't know if you can have the test done anonymously and you may want to. If you go to the clinic my understanding is it can be done anonymously.

We have 3 boys....known of them at risk. The oldest is our foster son. He will be the hardest to tell as he has already lost two foster father's to death. He is now 15 and we don't know where to start. I'm sure he knows because as mentioned kids hear more than we know. Our youngest our twin boys, 7.5 months. The are the result of PGD IVF. Technically, they are still are risk, however, the chances are slim. It will be easier to tell them as we will unfortunately make HD a part of life and include it in everyday conversations, answering questions as we go along.

My kids know that their father has HD, but it in no way makes things easier. My oldest (18) knows that he is at risk and seems to be ok, but our daughter (15) doesn't want to know anything.She hates her dad even knowing that he has a disease and I'm quite sure that if she knew that she was at risk things would be 10x worse. Unless you know that they are sexually active I really see no point in ruining their childhood. Our youngest is 4 and he will find out soon enough.

My husband is soooo mean to our daughter that she would move out today if she could and she cannot wait until he no longer lives here.

Hi Sally. Thank-you for your response. I am sure it will be difficult with your foster son. It sounds as if he and your husband are close and while that makes it difficult how lucky he is to have been fostered by a loving family. I am not sure what stage your husband is in. My biggest hope is that his HD does not prevent him from forming a close bond with his kids while he can. I am curious though about the PGD IVF. As I think of questions my daughter and son may ask I have thought of this. I am curious though how they are still at risk with PGD IVG. I would appreciate any guidance you can provide.

JudyF...your daughter and my son are walking the same walk. His Dad has been so very mean and critical. It is one of the reasons we divorced but my ex lives with us and we have a working (if slightly irregular family) I know it is not possible for everyone to do but I have to tell you one thing that helps my son is going away each year to a sleepaway camp. I think the kids need time away from the situation to grow and to be free of the tension that seems to be ever present. At times I have even considered having my son move in with my Mom (and may still do that). He will be at college soon and for him that will be a very good thing. Now that his Dad takes Depacorte he is definitely less mean. (not sure if your husband is on medication) I also lay down a lot more rules about what is or is not acceptable behavior (which my ex listens too probably because the divorce was a bit of a wake up call). My son's dad wants the relationship he just does not know how to bond or connect. You don't do that by yelling and ranting. He also forgets that being a parent is about love and forgiveness. I don't know what is the disease and what is his personality but I try to protect my son from the emotional turmoil by being his sounding board and support. I also assume most is the behavior is due to the disease although sometimes I get angry too. Anyway good luck to you and thank you for your very honest input.

Sounds like your kids need to speak to other young people with HD in their families, will help them realise why their father is being so cruel to them.

[www.hdyo.org]

I don't think it needs to be other young people Matt. It might be or might not be, but information and proper empathy can come from anywhere. The kids here are making sacrifices, they don't know why they are. They will continue to do so for both parents, and it's affecting them with the other parent too, whether the other parent sees it or not. The bonding won't be happening with either parent, and may never with the HD parent. That's ok, but being on the same team with the well parent could be very important to everyone over all the years, even after the sufferer is gone. I think before a kid talks to other young people, their own parents are by far the more important people to speak with. And any parent before they pass off a kid to another kid needs to have their own imprint on their own child. Online support is fine, but no substitute for family support and understanding in that context first. That would be the first course of action long before you turn them to another person or group.

In fact as a parent, I want my kids to not stagnate in their lives, and I have seen it happen with adults as well as kids. I don't want them entrenched in this HD thing at 15 or 25. I don't want peer pressure involved in their testing. I don't want them not working or not dating. I want them to understand HD, understand their mother, understand why I made choices for them, as I did, whether they were right or wrong. This is not what a group of young people can do for me with my own children. I don't direct them to groups involving HD. They would find them if the need arises. I want my kids to do the normal things, and that HD is no excuse not to do them. Get their education, date, go to parties. Get the job they would have had if HD not been there. It's up to the parent to make these things happen with their own life experience as the guidepost. I completely understand why these people don't wish to thrust HD on their kids. Even if I don't completely agree. It's not anything to do with talking to other young people. That is a step so far down the line it's irrelevant. This is a parenting issue, and personal to each parent.

Online support is just a single tool and not a strategy, whether here for us , or for kids. Don't over estimate it's value. To some it is of no value at all. They find it harmful to themselves. It's not an answer or replacement for a strategy. It may or may not be incorporated in a strategy. So may whether HD is divulged or not divulged at given ages. This is about parenting at it's core, and not HD. The same discussion could be about sex... and I wouldn't say go to this group of young people and talk about sex. Especially before I did all my parenting work first. I as a parent have their best interest at heart.. not any group online. And in this case I have to think about parents and kids.. not one or the other. These are not yet opposing forces at work with each other, and no matter how they handle their own children they may be correct in the context of their own child, regardless of what I think. We are sharing on this thread about parenting experiences. What and why we did as we did and outcomes to date. I told my kids at 10-12 years old... and that's way before any use of face book is of use to them. They couldn't even spell yet.. or read answers if they got any. However they could understand, cope with HD, and do normal things even without online support. It was not any solution to my own parenting.

The thing about telling your kids is not really that the bell has been rung. It's that at that point the parent has to teach what needs to be taught, and evaluate it themselves as to whether they themselves can do what they are going teach. You commit to behavior and principles, and actually abandon some others, and amend others. You often times have to show your own fallibility, and maybe look your kids in the eye and say "I was a total creep about that". Oddly the kid that's been through it with you might actually tell you that you have been too good for too long.

One also has to consider whether their child will understand a lie omission... and whether it will be understandable, or a wedge screwing up relationships further. And then the parent has to decide what the at-risk status, which is a separate issue, will do. How to teach proper concern of it, and when to utilize the knowledge and when to not let it interfere. It's not all about understanding that dad is mean and why. This is where life experience, and context of all parties is important.. and why one line solutions are not suitable.

Thanks again to everyone for their input. Matt from what I have learned at some point in the future it will be beneficial for my kids to know there are others they can reach out to and that support, in addition to family support will be beneficial so thank you for your input.

Eric I agree with you in that "The thing about telling your kids is not really that the bell has been rung. It's that at that point the parent has to teach what needs to be taught, and evaluate it themselves as to whether they themselves can do what they are going teach." I know for myself that it took me some time to get back on firm footing after hearing the diagnosis. And yes, when I tell the kids, and I am not sure when the when will be I fully believe that it will be up to me to help lead them and teach them to live life fully with HD. If it were just my daughter, who is 20, I would tell her today and I know her immediate reaction will be that she wants to be tested. I am conflicted a little more with my son, who is 16, hasn't really even had his first girlfriend, and is just landing on his feet with his own identity. He is a great student and I don't want to derail him at this point and (to be completely honest)I want him to live life a little longer without the burden. I also know he can't get tested until he is 18 (and I know he also will want to) and I weigh how difficult it would be to know but not be able to test.

To everyone who has responded thank you for giving me a glimpse into how you handled the issue. No amount of research can take the place of that window into your lives. I know the decision is very personal. I am still on the fence about not IF but when. But when the time comes, your input has helped me better prepare and to learn from your experiences.