Advertisements
Dh and I are waiting to hear if we will be allowed to adopt a toddler whose maternal grandmother died from HD complications in her 30s. The little boy's mother has not been tested, so the way we understand it, if his mother does have HD, then he has a 50% chance of also having it. But if she does not have HD, then he will not develop it. The mother does not want to be tested herself.
I understand that there is controversy within the HD community regarding whether or not to test, and that testing children under 18 is not allowed. So we are faced with taking the risk if we adopt him, and waiting until he's 18 to even have the option to test, and at that point, it will be up to him to make that decision.
Anyone have any pearls of wisdom regarding this?
Is it true that you cannot test a child for HD? Why is that? Are there any environmental factors that can help postpone and/or lessen symptoms of HD?
Thanks for any feedback.
Like
Share
I don't know if it's legal or not to test under 18 but I have a friend whose mom died of Huntington's and him and his three sisters refuse to be tested. There really is nothing you can do if you have it so many people resist testing because they feel it will only lead them to feel dread, waiting for the symptoms to show up. Good luck!
Advertisements
Thanks for your thoughts. I'd hope that if we adopt him, our son would be tested before he went on to have kids and possibly pass HD on to them. The way I see it is that w/o knowing, we suspect that it will happen and are just waiting for the symptoms to confirm it anyway. Perhaps others assume it won't happen unless there are symptoms, but dh and I would assume it is there. So if testing confirms it, nothing changes about our vigilence, but if it proves no HD, we can stop going through life waiting for it to happen.
I wonder if the prohibition against childhood testing is indeed true, if it's only in the US. I mean, children are tested for HIV, cancer - both eventual/possible killers. So I don't see the difference between knowing your status for those and for HD. Especially since you can pass it on to your kids.
I doubt the childhood prohibition on testing is true. My guess is that CPS cannot over-ride mom and have it done against her wishes. That would make sense. Here is a good link. Read down to the portion on diagnosis. A portion of the national health care law that just passed deals with genetic testing. You may want to look it up.
As far as my friends hubby, he just prefers not to know. They do not plan on having kids. My friend made it known that he would have to be tested before they had children so as not to pass it on. Believe it or not, none of his three siblings have gotten tested and they have chosen to have children anyway.
I personally would probably get tested. I guess in his mind and his siblings minds, it would just make things worse since there is no cure or treatment.
Advertisements
A really good and reputable online resource is the Mayo Clinic. You can find information on Huntington's at their website: [url=http://www.mayoclinic.com/health/huntingtons-disease/DS00401]Huntington's disease - MayoClinic.com[/url].
Another good resource is the National Institutes of Health. The link to their info on this condition is [url=http://www.ninds.nih.gov/disorders/huntington/huntington.htm]Huntington's Disease Information Page: National Institute of Neurological Disorders and Stroke (NINDS)[/url].
Many people choose not to go thru the genetic testing for this disease. I don't know if any of you are old enough to know who Arlo Guthrie is. His father, Woody Guthrie, was a very famous folk singer who died of Huntington's. When the test first came out, several of Arlo's siblings decided not to do it. They felt it would be harder for them to live productive lives if they tested positive and knew what waited in their futures. I can't say I blame them. I don't think I'd want to know either.
Huntington's runs in my family. My great grandmother had it and died from it, and so did her son, my great uncle. My grandma, his sister, did get the testing done, and was negative, so her daughter (my mom) and on down the line are all safe from it. I can still remember when she told us all we were safe. It was such a relief! It is a terrifying disease. I was in college when my uncle died. I have more memories of him sick than well. Be sure before you adopt this child that you really consider what it could do to him. It will be so hard for you, as his parents, to watch. My uncle went from an opthamologist with a thriving practice, to complete dementia in a very short time. On a side note, this uncle and my grandma had one more brother who was killed in a car accident when his kids were very young, so he never knew if he had Huntington's or not. They have all chosen NOT to be tested, but one is beginning to show symptoms, so we suspect it has not died out completely in our family. He doesn't have kids, but others who have a chance of having it do. If I was still at risk, there is no way I would have had kids without finding out first.