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Olivias test came back elevated at the hospital. We are waiting on her second round to find out what we do from here.
I have done VERY LITTLE research on this becuase i dont want to scare myself. The little bit i read the other day went from me feeling better to feeling worse. I was tested for this when i was pregnant. My test came back negative ( you need both parents to be a carrier for baby to get it) however the more i read the more i found that they may not test for all types of CF, like the more rare ones.
Im trying to tell myself that everything is most likely fine, but then that voice in the back of my head says that people get rare diseases all the time.
Her pedi says that sometimes the hospitals test too early and that causes some discrepancies with the results. He also said that sometimes genes can mutate, even if both parents arent a carrier, so she could still end up with it.
Just wondering if anyone has experience with this test coming back elevated for their baby.
I don't, but know that I'll be praying for good results! I'm sure she's fine - think about all those darn tests we take during pregnancy and in the end its alll usually fine, even though its so stressful at the time! Hopefully someone else can answer your question though!
I don't have any experience with this other than my friend with both parents that are carriers and she has it. Her brother is a carrier, but he does not have CF. When will you go in to get more testing done?
Haven't been on in a while, but saw the topic and thought to post.
Hugo had the CF test this year in a children's hospital because of his severe illnesses/hospitalizations this winter. We needed to rule out CF. Thank God, the final result came back negative, but I know how scary it can be to go through. Sending hugs and hoping for the best.
In a way, it's a good thing they screen newborns now so you won't have to go through the wringer later if your older child develops problems. They didn't have the newborn screening when either of mine was born.
Worst case scenario... many kids do live with CF with medical intervention... but thinking of it as a possibility is terrifying. Hang in there and keep us posted.