Scenario 4 Discussion:

Scenario 4

The issue of testing children is really a tough one. Number 4, Mary's husband died of Huntington complications at the age of 47. They have a 12 year old son who was found smoking in school, a little misbehaving. His grades were going down and she wants to have him tested for Huntington. You'd be surprised. So what's going on here? Obviously, first of all, we do need to counsel the family, again, about the implications of testing. It's really hard to be 12. It's really hard. Being a kid is hard enough without being a kid who knows that they carry this gene which is going to have this effect on his life. Being 12 is hard enough.

So, we discuss the psychological implications, the social implications, and the fact that there's nothing preventative to do. You're not going to treat this young man any differently if he's got the gene or he doesn't have the gene. So, first of all, you want to make sure that nothing medical is going on. You don't want to overlook anything else that could be causing him to have some emotional disturbance. His dad died. His dad had Huntington. A little acting out to me sounds reasonable. So, counseling for him, perhaps, would be an appropriate way to go. Find out what's really going on with him, but test him for Huntington? Not unless he was clearly symptomatic.

If intervention becomes available, if treatment, if medicine, if we find something that is going to help, then this all goes out the door. Then line them up, test them, get them started on whatever it is. That's very different. Or if the child really has symptoms of juvenile onset Huntington, because you can have Juvenile Huntington, unfortunately as young as two years old.

We talk about Huntington as being an adult onset disease and the most common ages of onset are in the thirties or forties. But I've seen people in their teens, twenties, thirties, forties, fifties, sixties, and seventies, with onset of Huntington. And just the word onset makes me crazy because I don't even know what most physicians are calling onset. I often can take the history back at least a decade and find that there was some emotional disturbance way before "onset" was even noticed. There may have been depression, poor judgment, some emotional sign might have existed way before and just went unrecognized.

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