Hi everyone,
I am not really sure where to begin. I am a 33 year mother of 3 beautiful little boys. My oldest is 13 and I have twins who are 9. They are my entire life. Everyday I wonder if I passed this horrible disease onto them. I was tested and positive at 42 CAG's when I was 25. My grandmother whom I was very close to had it and my mom and her sister are both positive. There is a brother yet to be tested. I also have a brother who tested negative. I pretty much knew I had HD by the way I behaved compared to my mother and grandmother it was way too similiar. I got tested because I wanted to know to prepare as much as we can and to educate my children in the way that I was not. So they can make their own educated decisions. By the time I had my first child I hadn't understood the magnitude of this disease. My husband was not supportive when I got tested and thought I was just giving myself a death sentence, but I had to know. It weighs on your mind constantly and is hard to ignore. He feels like if he had cancer and was going to die from it he wouldn't want to know. He still pretty much just ignores that this exists, but it is getting hard to now. I can feel the changes, the withdrawing, the anger, mood swings, irritibility and I can't control it. I guess what I am wondering is when to tell the kids? I feel like they are just going to think I am a bad mom. I do not think they are old enought o fully understand. I also do not want them to worry about me. I love them so much. The only thing I am currently taking to help is cymbalta and that isn't even for the HD. None of my doctors know about the HD as I paid out of pocket to have the testing and kept it private and out of my medical record. I also have been reading a lot of posts and it seems a lot of people agree there is no correlation between the number of repeats and age of onset, but what about going by the parents age? My grandmother died at 73 and I remember her being symptomatic when I was little. My mother is 56 and when I had last talked to her almost 3 years ago she claimed she was fine, but who knows. So I was wondering if anyone sees anything in going by the age of the parent it was passed from? Thank you for reading.

Your situation sounds similar to mine. I've read articles here that HD progression will be similar to your mom's. My mom just passed away at 73, too. That is a long time to live with HD. I think you should expect a similar life. My mom was living by herself up until she was 70.

If I test positive, which I think I will, I'm not going to tell them until they are 16-18. I don't want an accidental pregnancy, and the baby has HD. It's up to you. Everyone has to make up their own mind about when it's time to tell the kids.

Sunflower,

Your message really spoke to my heart. I am 55 and tested severals years ago CAG of 42. I found out my mom had HD when I was 33 and my children were 4&8.

I do think there is alot you can do to be proactive. Will has a great list of suplements he has posted about that I have been using for several years. Exercise is also very good for you.

I am on Paxil for depression, but those are the only meds I take-prescribed by my regular Dr. So you could get meds from him for that without telling him about HD.

I am not showing any signs of HD at this time and I am 55. I know how heavy this weighs on your mind right now.

praying for you,
Pam

Hi, Sunflower,
I found this on the Stanford HOPES website, which may help in understanding the CAG and age of onset correlation:

"Since the HD gene was first characterized in 1993, scientists have known that the number of CAG repeats is related to whether an individual will develop the disease. In fact, the genetic test for HD relies on measuring the number of CAG repeats and determining based on this repeat length if an individual is gene positive, gene negative, or in the intermediate range where symptoms may not occur in an individual’s lifetime. Additionally, CAG repeats have also been shown to be inversely correlated with the age of onset in HD. This means on average, a person with more CAG repeats in the HD gene will have an earlier age of onset than a person with fewer CAG repeats in the HD gene.

However, there are several important caveats to be mentioned about the relationship between CAG repeats and HD. For one, the correlation between CAG repeat number and age of onset is significantly weaker for individuals with a shorter number of repeats. Among individuals with between 40 and 50 repeats (an estimated 90% of people affected by HD worldwide), CAG repeat length has been statistically shown to only account for approximately 44% of the variation seen in the age of onset. For these individuals, other factors contribute to the age of onset for HD. Thus, although a person with a longer CAG repeat number is on average more likely to get HD earlier in life, this is by no means a certainty, especially for individuals with a lower number of repeats. For any given CAG repeat length between 40 and 50, there is a large range in the age of onset for HD—indeed, two people from the same family with the same CAG repeat number might present symptoms of HD more than 20 years apart. This observation suggests that other factors besides CAG repeat number likely affect the age of onset as well."

With regard to telling your children, that's a tough one, and I really have no idea . . . for my son, he was very young when his dad starting showing physical symptoms, so he definitely knew something was wrong with him, so I always told him what daddy had. I can't remember exactly when I told Joseph of his at-risk status, but I know it was before 9th grade science, because I work in a school, and I knew that they discussed Huntington's Disease briefly in their Biology class . . . this is a tough one and probably really at a time when you really feel you're ready to tell and they're ready to hear and process the information, as you'd know your children best. Definitely not easy, though, so I'm sorry you have to go through this!

Hi Sunflower,

It is difficult to know when to bring HD up with your children, especially when you aren't symptomatic/haven't been diagnosed yet. I feel that makes it harder to explain necessarily why you are bringing up HD in the first place. But despite this, I would talk to the kids now. Get them all together, highlight what HD is in a simple manner, let them know that is what nan has, explain that you may get it one day too, and then let them know that if they want to ask questions at any time that they can do so. They don't need to understand fully... just enough to know. Once you've told them they will probably just want to go play, like normal, it won't have a big impact. But what it does is it opens the channels of communication in the future for both you and the children. So when you want to highlight another aspect of HD, or feel it is time to explain a little more, you can do so... and start from where you left off from. The kids will also feel able to ask you questions if they begin to have concerns. If that channel of communication is not there then any concerns your children have may go unsupported, or unexplained. But by you stating that if they have any questions then they can ask you, it lets them know that mom or dad won't get angry at them for bringing the subject up. It lets them know they are supported and encouraged to ask questions about HD if they want to.

Having the support of your husband with this would be important too though. So perhaps a talk with him is needed first?

I wish I had materials to help you with this. You've actually given me some ideas for content for HDYO (see the link below). It might also be helpful to look at getting a copy of Bonnie Hennig's booklet on talking to kids about HD. I can send that booklet to you via email if you like.

Matt.

[www.hdyo.org]



Edited 2 time(s). Last edit at 11/03/2011 07:04PM by just1moreperson.

Thank you everyone. Matt your info was helpful and I will be utilizing that website.
I don't think that I explained the suffering that I watched my grandmother go through for her entire life. This is what I am scared of for me, for my children, even if they are negative, just for them to have to see me go through this. My grandmother died at 73, but she was gone long before that. She spent the last 5 years in a nursing home when we just coudln't keep up with everything anymore and it became to difficult to be her caretaker and watch day in and out. It was a decision we struggled with and in the end inspired me to go into the medical field. Before that she had no quality of life for almost 10 years or so that I can remember as early back. My grandfather God bless him did everything for her. They hid it for a long time cause they didn't know what was wrong or why she was doing the things she was doing. I think that you have to find someone very special and patient when you have this horrible disease and my grandfather was great with her. I can only hope my husband will be the same, but I can't say I don't wonder everyday if he can handle it. I am afraid some day it will just be too much and he will walk out and leave me at a time when I need him the most. The boys and I are very close, but who wants their children to take care of them? Anyway I am going on too long again it so easy to do here. Thank you again

I was hoping there may be someone who may be in the same situation to hear from..I would just like to hear what worked for some people as far as telling the kids and maybe some ideas on how not to scare the heck out of them!

Kallie

Kallie, Here is a link to an article about talking to your children about HD.

[www.stanford.edu]

Carla

Thank you Carla. Do you have children?

Yes, I have 2 sons, both have HD. My 3 grandchildren are living at risk.

Carla

Hi! My mom has HD and lives with us (my hubby and 2 boys; ages 14 and 11) and my kids have known about her illness from it's onset whuch can be very scary for kids...

Just before she was diagnosed, she was babysitting them while I took my dad to the MD. Apparently, she saw something on the TV that set her into a confused, raving mess... in front of my then 11 year old and 8 year old. I get a phone call from them and answer it to hear chaos in the background as my oldest son explained what was going on. Just as I told him to put grandma on the phone I hear this from my youngest, “Stop it Grandma! Go to your room for a TIMEOUT!” She quieted down and went to her room to collect herself. Needless to say, my dad and I left IMMEDIATELY for home and it was in the car where my dad told me what they had been hiding.

She was diagnosed 3 weeks later and my kids have known about it the entire time. I do not regret “having” to tell them and I told them that her brain was sick and she couldn't help having that outburst. With me being a nurse, I have always been up front about illnesses that my kids have asked me about.

Now 3 years later, even though it is hard to care for my 2 boys and mom at the same time it's worth it when I see the tenderness and compassion that flows from my boys for their grandma even though many sacrifices have been made on their part. Seeing my youngest put his arm around my mom in comfort (not fear) at my dad's funeral has been worth it. They help out and care for her and while I didn't want this life for them, I think it has made them better human beings.

Tell your kids in an age appropriate way before you might show symptoms... it could be scarier for them if they don't know what's going on. Kids are resilient creatures and have a huge capacity to understand things that even us adults have a hard time with. But put it in age appropriate way... not giving too much of the ugly stuff. Grandma's brain is sick was enough of an explanation even after that scary event for my boys at this this age. My older one asked more questions and I answered them truthfully because we were all scared for her.

Hang in there... I think you are very brave for being tested but I think you're bravery will show in how you tell your kids that you might get sick. Take Care!

Diana