Talking to Children About Huntington's Disease

Katrina: For Lisa Mooney, Lisa how do I talk to my children about them being at risk?

Lisa Mooney: This is a really good question. I think with kids, the best thing to do is one, you have to look at their developmental age. You're gonna talk to a teenager much differently than you would talk to a five year old, or a six year old, or a 10 year old. You do have to look at their developmental age. If you do have kids that are developmentally at different ages, it is best to talk to them each separately, because they're gonna have different needs and you're gonna need to give more information to older kids than you would necessarily to younger kids.

There's no right or wrong way, definitely. The best thing to do is to name the disease. Whether you name that disease Huntington's Disease, or whether you name it a brain disease, or you whatever code you have for your house, definitely name it something. Don't just call it a disease or "Mommy's sick." or "Daddy's sick." or anything like that. Remember, you can be sick with COVID, you can be sick with cancer, you can be sick with Huntington's, you can be sick with a lot of [00:01:00] things. Depending on their developmental age, if you haven't named it, if they come down with a cold or something, they might also thing, "Oh, I'm gonna turn into Daddy." or, "I'm gonna turn into Mommy right now. You wanna avoid that. So naming it is really helpful.

The other things is to let the kids take the driver's seat as far as how much information they want. Kids are usually really good , they will ask the questions and you can answer the questions based on what they ask. I think, Katie, you could probably share better. But kids are not gonna ask you when you're sitting around the dinner table, in most cases, they're usually gonna ask you when you're dropping them off to soccer, or [laughs] something like that.

You do have to be prepared for it at any time. Sometimes if they ask a question, and it's not the ideal time or you don't have time to fully address it, it's important to just say, "You know, that's a really good question. Let's talk about it tonight at dinner time, or let's get on the internet together and research it." Depending on their age.

There's lots of resources out there, [00:02:00] for kids. HDYO has an amazing website that I access often, myself as a professional. But they have an amazing website that helps, give you some ideas at all levels about how to talk to this with your kids. But it is important. Kids are very, very, astute, and they know something's going on. Pretending like everything's fine is not gonna work for them.

If you don't show the information with them, they will go try to find it somewhere else. Unfortunately, the internet is full of false information about Huntington's. You wanna make sure that they feel like they can come to you and ask the questions. Maybe they're not ready to hear about it, but just reaching out your hand and saying, " when you're ready, Mommy, or Daddy, or whoever, we're happy to answer any questions that you might have about this. we know you might be scared. we're scared, too. But we're gonna get through this together." And just reassure them that you're gonna be honest with them.

Dr. Sam Frank: How to talk to your kids about being at risk or having Huntington's Disease in the family, [00:03:00] one of the worst things you can do is not talk to them. I completely agree with Lisa's advice in terms of how to approach it. Every kid's gonna be different and take their lead. But to shove it in a closet and pretend that it isn't there is probably the worst thing that you can do for families. And talking about it when they're ready.

There's never a good time to talk about bad things. But when they're ready, then it is, it's appropriate to talk to them at, at their level. And they will find out information. It is amazing how much information is out there through different means. But the internet is just in everybody's pocket these days. They will go and search for that, if you don't take the lead .

Katie: As being a parent with, three children at risk, I think the best advice I got from my UC Davis team and all my friends was, do not lie to them. That was something I took from the very beginning as don't lie when they as questions. But I thought like, the at risk, like, question would be the hardest but really it was more talking to them about end of life was the hardest for me. Talking to them about hospice.

When their dad went on hospice, it scared them. We sat [00:04:00] down one day, the three of us, and my oldest one asked a question, and then my other two just started crying and they asked me questions for hours. I didn't realize how many questions they had and how observant they were, and how they weren't asking me these questions, 'cause they thought it would push me over the edge. "You're already going to the care home. You're already watching Dad pass away. We're watching Dad pass away. We don't want to rock the boat with Mom 'cause she's already on a tightrope." And then when they asked me all these questions, I felt horrible 'cause once we answered them and we spent those couple hours together, we all just felt so much better that we talked.

Dr. Sam Frank: Talking to them, the truth, and what's going on just more fact-based than anything else, sets up an open relationship so that if they have questions later, not just during that emotional time or that period, that they are gonna feel that it's an open door rather than, "We shouldn't talk to Mom about anything."

Terri Tempkin: Katie thanks for sharing that story, because I think you perfectly elucidated some of the issue. I would also say even though you have one conversation doesn't mean that the [00:05:00] job's done. It'll be a continual process of everybody being able to process.

Dr. Sam Frank: Just to add. You're not alone. There are many times where I've spoken to teenagers or other people in the family about what's going on, because they just have questions that's beyond what the family member either feels comfortable talking about, or has the information. That's what the team of people behind, their caregivers and patients are there for. And so please take advantage.