Although many doctors counsel parents not to have their children screened for Huntington's disease--mostly because if affects their insurability later in life--it is a good idea to prepare at-risk children for the possibility. Since Huntington's disease is a genetically dominant condition, and because children can be tested easily for the disease, it is a good idea to begin education early.
Instructions
Talking to a Child about Developing Huntington's Disease
1. Prepare answers to questions that you think the child will ask. This can be a nerve-wracking experience for parents and other adults in the child's life, and you'll be better able to handle the situation if you know what to say in advance.
2. Explain that Huntington's disease is passed on from parents to their children, and that the child did nothing wrong to deserve to have the disease. Many children suffer from fear and anxiety when they learn that they might have a fatal illness, and should be given all the facts.
3. Stress the fact that young children have an advantage over adults with Huntington's disease. This condition is highly researched and new developments discovered every day increase the chances of finding a cure or a way to stave off the symptoms. Although no such cure has been revealed yet, research indicates significant progress.
4. Educate the child on proper nutrition, as this disease can cause malnutrition and difficulty with nutrient absorption. A healthy diet with plenty of fruits, vegetables, protein and vitamins can help delay the onset of Huntington's, and will also increase mental acuity and decrease psychopathological symptoms.
5. Join organizations dedicated to the research and cure of Huntington's disease with the child. In many cases, children feel better knowing that they are contributing to a greater cause, and meeting people who are experiencing similar emotions. Organizations such as the Huntington's Disease Society of America (see Resources below) help patients cope with their condition and provide information about research and development.
6. Allow the child to ask as many questions as he wants about Huntington's disease. Rather than providing information that he might not want to know, it is often best to let him take the lead and see where the conversation takes you. When new questions develop, he will ask.
7. Offer to talk to your child's physician together in a private meeting. She might feel better hearing answers from a doctor rather than just from a parent or other adult.
Talking to a Child About a Family Member with Huntington's
8. Explain Huntington's disease as simply as possible. It's perfectly fine to say, "Huntington's is a disease of the brain," rather than going into detail about genetics and the various symptoms. This will help the child to sort through the information with less stress.
9. Invite the child to ask as many questions as he wants. It might be easier to do this with a doctor or with the person who is suffering from the disease so that the child feels more comfortable.
10. Reassure the child that her relationship with the patient doesn't have to change. In many cases, children are most afraid of having to act differently around a loved one, so make sure she understands that she doesn't have to behave any differently.
11. Explain that the patient might have difficulty connecting with others, and may become short-tempered or irritable from time to time. Stress that this isn't his fault, and that he shouldn't worry that he's done something wrong.
12. Tell the child that she will be able to visit if her loved one has to go to the hospital. It is important to make children feel as safe and comfortable in clinical situations as possible, especially if the patient is a parent or sibling.
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