Waiting For Genetic Testing Results

Waiting for genetic testing results is nail-biting scary. Most genetic testing also takes a long time, so that adds to the worry. Recently my daughter, Sammi has undergone genetic testing for Narcolepsy and for Long QT syndrome. Both tests take about 8 weeks to get results.

The Narcolepsy genetic testing can have some false positives, but we decided to have it done. My husband and I feel that if it comes back negative and her next sleep study (after her tonsillectomy) comes back normal, we’re on the right track. Then we’ll see if Narcolepsy and other sleep disorders can be ruled out. We’ll deal with a positive result if happens.

The Long QT genetic testing has much more importance. I really don’t want to go into the significance of it, but we will know which way to proceed with treatment if it comes back positive. As of now, we are keeping Sammi off the list of medications that can cause Long QT symptoms. The pediatric cardiologist explained that we may have to use all of those medications with extreme caution even if the genetic testing is normal. So we wait.

The ENT doctor had hoped for results of the Long QT testing before Sammi undergoes her tonsillectomy, but with school approaching at the end of August, we’re pushing for the surgery as soon as possible.

All Chidren's Hospital

Throughout all this, my daughter has been a trooper. One who was once afraid of injections and blood draws, she had both blood tests done without a tear. And we’re so grateful that All Children’s Hospital has the lab right there to do the genetic testing.

Have you had genetic testing done on your child? What was it like to wait for the results?

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Connie Roberts

Professional Blogger
Living in the Tampa Bay area, I'm lucky enough to see beautiful sunsets almost every day. Although life can be difficult at times, focusing on the positive and being with my family is what gets me through.

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Comments

  1. I had an amnio with Nolan because they thought he was going to have Down’s Syndrome (he doesn’t, but he does have a birth defect. That wait was awful, and they called us back pretty quickly ((after just about 2 weeks I want to say? Much faster than usual). We also had Lennon’s DNA run (nothing has come up so far) and are about to go in on Aug 1st as a family to have ALL of our DNA run because we have too many issues to be “normal” (ha, ha). These are much easier because we already know there’s an issue, we’re just waiting for a name. Of course you’re sitting and hoping its not something awful, but I guess you just can’t let your mind wander…I’m probably not being very helpful. But in any event, you’re not alone. I know the waiting can be VERY hard, particularly when its such a LONG wait. I’m always here if you want to vent. ((Hugs))
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  2. I hope everything will be alright, good luck and I’ll pray for you!
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  3. I can’t imagine. I have trouble waiting for traffic lights to turn green. Genetic testing for my kids? I would be a mean, bitchy wreck.

  4. hang in there !! prayers with you !

  5. Wow. Such tough stuff you’re dealing with. My thoughts are with you.
    Jessica wrote this fabulous post..[Almost] Wordless WednesdayMy Profile

  6. I can not say I know what you are going through but I will tell you, you will be in my thoughts and prayers. I have friends with a 1 year old down syndrome grand-daughter and I can tell you, she is amazing and we all love her. It is beyong painful how she is treated by others. We are fighting along with you for a cure. Than you for the fight. stopping by from #commenthour

  7. I can not imagine what you are going through. I am sending out some positive thoughts and prayers your way and hope for the best. Visiting from #commenthour

  8. I hate waiting for medical tests results, but it’s better to have them done than ignore them. We have so many medical tools now, that not using them may cost our health. Hope everything turns out fine.

  9. Hi! I’m stopping by super late from Comment Hour. Congrats on being selected! As for your question, I do not have children yet, so I have not had to do this. I do, however, know that some of my friends have done some genetic testing on their children for various reasons. They’ve said that peace of mind is the best thing that comes from testing. Hang in there, and I pray for favorable results!
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  10. This must be a difficult time for your family and I hope your hanging in there ok. After my son was born the newborn screening they do after birth showed that he tested positive for a rare genetic disorder that is serious and sometimes fatal. There are a ton of false positives with the test so we had another more specific test done and had to wait over a week for the results. It was the worst week of my life, and when we finally got the call that he did not have the condition, it was the biggest relief of my life. I hope you get some answers really soon!
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  11. I’ll be thinking of you!!

    We just found out last week that my son was diagnosed with a developmental delay and being asymmetrical. We got genetic testing done today and they are telling us it will be 21 days until the results are in. The waiting is terrible!

  12. I am thankful I haven’t but am afraid my daughter is showing signs of Lupus and she will need to be tested if it continues.
    Interestingly enough my niece AND nephew acquired Lymes from their Mom, found through genetic testing.
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Trackbacks

  1. […] This will be her first time away from us since being diagnosed with Sinus Tachycardia, possible Long QT Syndrome , POTS and Anxiety. But, I have no worries. She’ll be well taken care of. Alicia and Scott have […]

  2. […] calculated wrong and there was nothing to worry about. Instead, more abnormal EKG’s turned up. Genetic testing for Long QT was done, which turned out negative. We were reassured that the EKG’s were a fluke, […]