HIPE Focuses on the Kids
Kids were a big focus for part of the questions asked of the HIPE panel in Sacramento, at our Highly Interactive
The following is a transcript of the questions and answers. Questions are always de-identified for the privacy of HD/JHD families.
Question 1: What suggestions do you have for telling children? What age, and how?
Response 1: (Lisa Mooney) In general, kids know a lot more than we give them credit for. They are probably aware that something is going on, and they are probably aware that something strange is happening to Mom, Dad, Grandpa, Grandma, whoever. It is important to name it for them, and not just say, “Oh, Mom is sick, or Dad is sick.” Remember, we all get sick, right? We all get colds; we get sick. That can be very confusing to kids, so it is important to have a label for it. Whether you want to call it Huntington’s disease or just call it HD, or call it something else, that’s fine. But you need to label it for kids to make it less confusing for them. Of course, how you tell your kids will be
*HDSA has a resource packet with “How to talk to kids about HD,” available on their website.
Response 2: (Dr. Sasha Duffy) A couple of situations that I can think of are at time of diagnosis, so when some people come to us for predictive testing, and they find out they have the gene, and they will get Huntington’s disease at some point in their life, and where they come to us and get a new diagnosis of Huntington’s disease, and there is a question of, “What do I tell my kids?” I will often say, “Just take a moment and let it penetrate you, ok? Just let it sink in for you; let it be a little bit clearer for yourself before you are ready to pass that information on. It’s ok to just take that moment before letting your children know.”
Question 2: With a child with JHD, what limits are acceptable? So if they don’t get their way and they throw a tantrum, what should you do? What are the limitations with a child with JHD? She wants to take her clothes off inappropriately, or she wants to hug and kiss strangers, things of that sort. What limitations should we put on a child with JHD?
Response 1: (Lisa Mooney) Kids are still kids, sick or not. With Huntington’s or not, it is important to give them responsibilities that are appropriate for their developmental level. It is important to make sure that they follow the rules that you set forth. It is o
Response 2: (Dr. Vicki Wheelock) The other side of that, though, I think is that you want to always make sure the person with Huntington’s is safe, and I think you are touching on something where sometimes there is a safety issue, and it’s about understanding who is a stranger and who is a friend that you know, that type of thing. I want to say that this goes to teens and young adults where sometimes, because of some of the brain changes, they aren’t judging danger adequately, and that’s one of the hardest things—you want your child to mature, be as independent and to follow their own dreams as much as you can, but you also have to watch out for them; you want to try and help them understand. So I think it has to be developmentally appropriate; something for a six year old is different than a 12 year old and an 18 year old, but if you can do that consistently and get into a plan with them, it will be easier for them to accept guidance. The hardest thing about this is that the disease is progressing, and that’s why we have to adjust how we’re maintaining their safety. For every person, it’s always going to be different, but I do think that creating a culture of safety and safe boundaries and talking to them about that, not to scare them, just to help them understand that sometimes things can happen that you wouldn’t expect and that there is a reason I don’t want you to do that [is important], and then try to redirect.
The Huntington’s Post is made possible by grants from Teva Pharmaceuticals and The Griffin Foundation.