My husband's father is 80 years old and got tested for the HD gene because his brother and a nephew have HD. My father-in-law shows no symptoms at all apparently due to the fact that he falls into the "decreased penetrance" range at 39 CAG repeats. His doctor had advised him not to be tested since he did not exhibit symptoms but he decided to get tested. My husband decided to get tested and today we got the results that he did receive the defective gene with 39 CAG repeats. My husband is 51 years old and does not exhibit symptoms (at least that we know of) and so now we are faced with the possibility that he may or may not develop symptoms. Our big dilemma is whether or not to tell our adult sons. If we could rewind the clock, we would have preferred not to know. We feel that this has cast a pall over us and we don't want our sons to be robbed of their lives and happiness and their futures unnecessarily. Do we wait and if my husband ever has symptoms, then we tell them? What if my husband never exhibits symptoms? Do we put them through the hell of wondering whether or not to get tested and what that might mean for them?

Welcome. You have asked the age old HD question. You can search the forum and find a bunch of experiences from various folks here including Laura & me. We opted to wait until they were in their late teens. There are no easy answers to your questions as every HD family dynamic is different. How old are your sons?

Pete

They are 20 and 23. The 23-year-old is married and is expecting his first child in May. I will search the forum for other posts on this topic. Thank you.

Will they be upset with you for keeping this from them when they find out later? Do they know that HD is in the family at all?

I'm not sure how they will feel. They do not know HD is in the family at all. We only just found out about it when my father-in-law got tested in December. My father-in-laws parents both died at ages older than 70 but never exhibited symptoms so he does not know where it came from; if one of his parents had it without symptoms or whether this was a new mutation. I don't know when my father-in-law was made aware of his brother having HD as they live on opposite sides of the country and have not been in touch with each other over the years. I did note that his brother's HD test was done in 2009. When we got the news about my father-in-law, we chose not to tell the kids because we were so sure that my husband would test negative for the gene and didn't want to worry them unnecessarily. My 23-year-old's wife was already pregnant. My husband is regretting that his father got tested and is regretting that he got tested and is wishing that he hadn't found out, which is why I am wondering how my boys would react to finding out. Since there is no cure and no treatment, why put them through this? I don't know what the answer is and I am having a hard time finding other posts about this issue. I'm not real good at navigating around forums.

I will forever remember this Valentine's Day as the day we got this bad news. Our emotions went all over the place in the last 16 hours. My husband is struggling with anger towards his dad that he even got tested. We also realize (too late) that now that my husband has been tested, it is likely too late to get long-term care insurance and a few other things that we should have had in place before testing, if we could have afforded it. I wish we had known. What is done is done now though, and we must find a way to move forward with this new reality. If anyone has any advice or tips for us at this point, especially since he is in the "gray" area and may never even develop symptoms, I am open to those who have experience with this.

First of all, everything is new so give it time to resonate. Also, the low cag count is much better than most so that can be looked at as a
positive. There are many things you can do and supplements you can take to be as healthy as possible. If you read the prior posts and news on
HD there are many trials in progress which look very promising so that is a positive. I wouldn't say anything to your children until you
have grasped everything, thought it through and are ready to talk with them - this doesn't necessarily mean that they will get HD.
Basically, take one day at a time. Good luck to you. There are wonderful people here.

Here are a few links. You can search by asking for keyword "telling children' or 'children' and select all dates and clear out anything in the 'author' area


[www.hdlf.org]

[www.hdlf.org]

Pete

Thank you for the direction. We are definitely going to give ourselves time to process and sort through all of our wide-ranging emotions right now without making any hard and fast decisions regarding whether or not to tell the kids and when. We need to get our own footing first. We definitely plan to see a genetic counselor soon which should help. I so appreciate this forum and can see where it is important to have travel companions who share this same burden as we travel this uncertain path ahead.

I think you should tell them. My FIL was in his 70's when we found out. Our son was an infant. It was shocking news. There was no family history, but probably something like your story where the CAG was low and maybe it expanded. There is something called anticipation which in genetics means that the CAG count can expand to higher numbers with offspring of those who are positive for HD. So your children may not have it, or have it and the same low CAG you have, or they could have a higher CAG and their children could have still higher CAG counts. I hope sure hope they don't have it, but I just want to make you aware that in my opinion it's only fair to let them know so they can make informed decisions. For example, some people who are gene positive have in vitro where only gene negative embryos are selected so there is no way the gene is passed on. Another thing to think about is to get long term disablilty and/or long term care options etc in place before a person is tested (unfortunately we didn't think to do this). This site does have a wealth of information. It can seem overwhelming, but I believe knowledge is power. Most people feel a cure is around the corner.

My heart breaks for you getting this news. We found out on December 11th 2013 and I will always remember the date. My ex-husband is the very first known case in the family. We did tell our children ages 15,17,19 and have found it has brought our family even closer as we face this demon together. A wise friend told me that getting secrets out in the open takes their power away. I suspect your sons will be able to pick up on "something is wrong"and will be wondering.
We agonized about whether to tell the kids and it is not an easy decision by any stretch. Your husband's low CAG count makes it even harder to predict but hopefully will mean no symptoms. It seems good that your FIL and husband both had the low CAG so no genetic anticipation.
I don't know what our kids will do about testing but I hope they take much more time to let this information settle in before making a decision. All my best to you...if i could hug you i would. This just hurts so bad right now. One day at a time is a great plan.
Jackie

My mother, 75, has a cag count of 40. I am not tested. We have told our sons (now 19 and 16). they were not happy but they can handle it more or less. they were never angry or upset about us telling them. They told me they had to know it because it is a family thing. I think you should tell your sons because they have a right to know. Take care and all the best!