Discussing Genetic Testing with a Child

I'm with Suz T. I think if you make a big deal out of it will scare him to death. Short and sweet...

I would just say we are having some bloodwork done. No need to go into details right now. Please don't do that to your son.

There's really no need to explain to him the details at this point. We get bloodwork done to ensure that we are getting all the nutrition we need and are growing. Bloodwork helps our doctors have a better idea of our overall health.

At this point, there is no reason to go into the details or get him scared or worked up. Even if it comes back positive for those genetic markers, you don't need to freak your 8 year old out by trying to explain the condition to him that killed his dad. Just don't go there. Genetic testing determines a predisposition for certain diseases, but it does not guarantee that he will have those diseases. If he tests positive for those markers, you stay watchful and vigilant, and when he's old enough, you inform him. Right now, he's not old enough and doesn't need to live his life in fear.

I would just refer to this as some routine medical testing for now.
Best!

Beyond telling your son that you will be getting testing. Fiind something fun to do also so this trip isn't just about the testing. There are tons of fun things in PA and if your appointment is timed right you could squeeze in that fun thing and it won't be wo worrisome for you or your son.

Are there any fun places near the testing sight?

I would check and see for certain.

Yikes,

I am so sorry you lost your husband.

I would do what others have said and keep it at blood testing and routine healthcare.

I know for a fact if I told my daughter that I was genetic testing for something like that, she would be so anxious that she would not be able to function properly because she is a worrier and is prone to anxiety. I would never knowingly put her through that type of worry.

You know your son better than we do. It might cause him stress, anxiety and more to think he may die like his dad. I'd keep it simple.

i wouldn't go into any detail for which he doesn't request information. 'we need to take a long drive for you to get a medical test. it'll probably be kind of long, with lots of poking and prodding, but we'll go somewhere awesome for dinner afterwards, and stop for ice cream on the way home. got any requests?'
if he asks more 'it's called genetic testing. they take a look at the genetic structure of your body and what sorts of things you're predisposed to have. could be diseases, but could be some sort of creative genius! maybe you'll be the guy who invents jet-packs! if you could invent the next big cool thing, what might it be?'
and if he pushes it all the way, level with him, but keep it simple. 'your dad's cancer was a rare type. we're going to get you checked out just to see if your genes carry the marker that indicate you could develop it too. but honey, even if you DO carry the marker it doesn't mean you're going to get the cancer. it just means that we'll watch you more closely so if it did happen we could catch it quickly. it's just a precaution. do you have any questions?'
honesty, but no more info than necessary.
good luck!
khairete
S.

Are you concerned about him being scared or understanding what it is or both? At age 8, he will understand pretty good what you are telling him, so don't feel you have to water it down. Be honest, if he asks questions. (Like will it hurt? If it will, tell him). Reassure him it's okay to feel however he's feeling--sad, scared, etc. Have him think of some questions and write them down. He can ask the doctor(s)/nurse(s). Google some stuff--I know people shouldn't use Google as a doctor, but it can provide some good info and pictures. For example, if he's getting an EKG, you can find a picture online of someone getting an EKG to show him what to expect.

Our son is 7 and has had 3 open heart surgeries--he was born with 1/2 a heart. He understands A LOT and has learned to be an advocate for himself. We've always been really honest with him. If it's something we don't know or don't want to talk about at that moment, we just say, "Can we get back with you tonight with that answer?".

I'm sorry about your husband and I hope the results are what you're hoping for with your son. I agree with the mom who suggested doing something "fun" while in PA. Are you going to CHOP for care? If so, your son is in GREAT hands!!!!! ((HUGS))

Routine testing...that's it. I wouldn't freak him or yourself out. The good thing about getting the testing done early is that you'll find something early if it's there to be found.

Definitely find something fun to do around the testing center or on the way there or back. You'll both need it.

Good friends of ours had a daughter who lost an eye at 18 months to cancer. They found out it was a gene from the dad. When the second one came, she was in an out of eye doctors constantly to make sure she was okay...apparently that type of cancer is found mostly in children, so by 13 she was told she wouldn't be expected to get it. But they didn't tell her why they were doing it because there was no need to worry her. When she started to ask, they were honest with her - she knew what happened to her sister. The girls are about 10 years apart.

I am so sorry for the loss of your husband.

I wouldn't tell him anything. I'd simply tell him he has some testing to be done by the docs office. Then when you get the results you talk to him when it's necessary.

Hopefully he won't have it but if he does then he needs to know something but I would not tell my 8 year old grandson that he had a genetic disorder that would lead to serious life threatening cancer. He'd live with that every day and every night. If he doesn't have any symptoms then I'd not say much.

I'm not really sure I'd tell him anything until it was necessary. That he was having symptoms.

Don't tell him much of anything other than we have to get a test run because the doctor says.

If it is a cheek swab really no biggie, if it is a blood test....you know your child best if they freak out over it or not...

No need to get into any details at all.

If he has it and starts showing symptoms etc. Then just explain his kidneys aren't working as well as they should and the doctor says, we are going to treat them "this way".

He is 8...the less he knows now the better.

I wouldn't tell him the real reason. That's just my opinion. I would suggest telling him that this a test that many doctors order for kids. That's it. Keep it simple.

I agree with the ladies, the less divulged the better. This will be more of a stresser for you, knowing what is actually going on, than for him. As it should be.

"We're going to the doctor. He will do x, y, z" For example taking blood, or whatever kind of testing they're going to do. Just so he's prepared. "I know it won't be too fun, so will get ice cream afterwards if you're good!"

My son (almost 9) is scared of needles, just the thought of going to the doctor fills him with anxiety every time (even though he probably can't even really remember the last time he had a shot.) So just knowing he's going would stress him out. Telling him what to expect would only be fair.

But the why's and wherefore's I don't think are necessary at all. The less said about that, the better. Spare him that.

I can imagine my son freaking out, thinking it means he has what his dad did, and so he's going to die, etc. No way to put a positive spin on that really. Just don't even go there, is my suggestion.