Genome testing...

laurding

Just got the call that we are approved for genome testing.  We have to decide if we want to know everything or just everything affected by what they "think" is going on.  We could find out a whole lot that we didn't even have on the radar. 

 

Anyone have an experience with this?  We are leaning towards everything, but it would help to hear someone else's experience.  

 

Thank you! 

preggersINschool25

I said I wanted to know everything but I won't get the results until the end of August. I would rather know something is coming and monitor it rather be ignorant to the problem.

kcisthebombdotcom

We are on the fence about this. We have seen a geneticist and her microarray came back normal. our current plan is to wait until she's three, see where she is developmentally and take it from there depending on what insurance covers.

my neurologist strongly believes that there's an underlying chromosomal abnormality causing my DDs delays/epilepsy. Developmental delays and dysmorphic features are common on my dads side. There's also a lot of college educated people in my family despite delays in childhood. Only one of my grandmothers children has a lower iq and significant learning disabilities which made him unable to complete school...but he also holds down a blue collar job, owns a nice home, and has a wife and kids so it wasn't a death sentence. Knowing what is wrong doesn't give you a whole lot of useful info as it something that can't be fixed and it doesn't give you a prognosis. At best, it can help you with services. I know it can help you with family planning, but with the prognosis so variable I don't even know if it would be compelling enough to change my mind about kids. 

My neuros recommendation was to give the technology a few years then move forward with testing. That's likely what were going to do. 

Rose.9.6.03

We did exome testing through a research study (yay free!) - but we were never given the option to know everything because it is research study.  In some ways, I'm glad we weren't given the option because it's a tough decision to make.  

There's so much information that can gleaned from genome testing, but that doesn't necessarily mean that we know what that info means or what to do with it.  I think, personally, I probably would just find out info relevant to the specific reason for testing.  Largely because I'm such a worrier and having information about everything would freak me out. But I can totally see why someone would want to know everything, too.

Sorry, I'm no help.  But good luck with your decision and the testing.