Ugh. Genetic Testing. — The Bump
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Ugh. Genetic Testing.

We just had my daughter's blood drawn for genetic testing yesterday. Today I found out that the wait time for this specific test (which tests all known deafness genes) is at least six months. So I get to spend another six months analyzing her every move wondering if she has Usher's. I was hoping that having the testing done would ease my anxiety but I think it has made it worse. Any tips for getting through the waiting period?
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Re: Ugh. Genetic Testing.

  • I'm a lurker but I have been through the genetic test wait.   I can't say that I've ever had to wait 6 months for tests.  That's awful and I'm sorry you have to go through this.  I did have to wait 6 weeks for genetic testing for Cyctic Fibrosis diagnosis for my son and to help me through those long weeks I made plans and tried to stay as busy as possible.  I contacted every friend and relative I had to set up an outing or a get together.  I cleaned my house nonstop.  I never laid around when I had free time and I tried to not be alone so my mind wouldn't wander to the "what ifs".  And I prayed.  I also asked my doctor for a prescription to help ease the anxiety, but that's not for everyone!   The good days and the bad days will come in wavess o it helps to have a solid support system for when your thoughts and fears get the best of you.  It will make you feel better to talk about it and get it out in the open so you can move past that wave.   I hope it all turns out ok for you and your daughter.   

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  • 6 months?  Wow.  I guess we were lucky.  They tested LA's cord blood and we only waited 2 months for the results.  I know it is easier said than done, but try to put it out of your mind since there is nothing you can do to make time go faster.
  • We've gone about that long. Your best bet is to stop worrying and try to focus on the daily challenges and accomplishments. Whatever it is, already is. You can do what the child therapeutically needs now and hope for the best. We have gone through so many rounds of genetic and metabolic testing, and still no answer. Many people never get an answer. That takes time to accept, I understand. But I thought I should mention that so that you are not blindsided.

    All that said, sometimes they quote you a longer time and then you get results sooner. But really, your best bet is to mentally shelve that topic.

    Good luck and hang in there. We understand! 

  • We had to wait 18 months for ds to have results back. Unfortunately, it had to be sent to England because that was the only testing site for that particular test. And it came back negative in August. So we're back to the drawing board. The wait was annoying, but we just carried on with things and dealt with what we knew.

  • The waiting is SOO hard. I've been there multiple times and the only advice I can give is to try to find things to take up your free time. In my experience it has NEVER taken the full amount of time they said it would. Some things came back weeks/months earlier. 

    I have a bad habit of "google". I spend way to much time looking up what we are currently testing and then it always comes back negative anyway. Such a waste of time in the long run :) I THINK we finally have our answer so I'm all about the researching now!  

    Z(Monkey) 6-30-07 and E(Bear) 9-6-10 Living life with my little warrior and his big brother :) image image image
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