Hey all,

I'm 3 months pregnant and planned to test the baby using a cvs test.
After lots of thinking we tested my husband and he doesn't have the affected gene!!! Yay us.

However, he has many, very specific, signs of the disease- like the piano playing feet movement that is very specific to hd.

Now that I dont need to check the baby I am very worried!
I was thinking about doing a genetic screen test for the baby but not sure they can see hd.

Could they have been wrong at mgh when they said he is negative??? Am I crazy to still think he has it?

Any thoughts or suggestions would be great now.

Best wishes,
Yael

Yael-

they can test the baby through cvs. are you planning to have cvs anyway? or just for this?

I know they can!!! That was the plan.

However, now that my husband is negative we don't have a reason to do the cvs.

Since I see very specific hd symptoms in my husband I'm very worried about the baby and afraid they made a mistake in the test.

Not sure what to do next....

MGH is an excellent hospital and it would really surprise me if they made a mistake. It is very common for people who test negative to wonder if a mistake was made for a good year or so and maybe that applies to family members too. I think it is because one of the ways that people prepare for the test is to think that they are positive so that if they are it won't come as a shock. Also, one of the reasons that people test is because they start to see 'symptoms' in themselves so they are already thinking that they have the gene.

I would be a lot less worried about piano playing feet than I would about irritability over trivia, odd memory problems (forgetting something that one has known for years), an inability to stop being angry even when the person discovers they were mistaken about the reason, difficulty in multitasking, and other cognitive and psychiatric symptoms.

Hi Yael,

Similarly to you, my family got the wonderful news that my husband was negative for the gene about six months ago (although we learned about six months after our baby was born). Yet, still, I sometimes wonder whether the lab made a mistake (it hasn't yet been a year since we learned the good news, so I'm placing us in that category of people Marsha describes who wonder whether a mistake was made for a good period of time after learning of a negative result because they had been convinced the results would be positive as a way of 'preparing').

Congratulations on your pregnancy!

Bluegrass

Thank you! I'm still worried about all this movements so have decided to check the baby just in case.

Unless I can have another reason for those movements I can't really let it go.

I'm a scientist myself so am always looking for a reason.

If people can talk about early movements they experienced I would appreciate that greatly.

Thank you
Yael