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.
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?