Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 , My daughter was tested with the newborn screening test and failed (she was noisy breather) and then passed a follow up test at 6 months. When she was 15 months old we found out she had moderate hearing loss. Last year (when she was 3) her loss progressed to the severe range and it was then we started asking what was causing it and what we could do to stop the progression. After some research on our pediatrician's part we had tested and found that she has the connexin 26 gene. I'm no expert, but I can tell you what the genetecist told me. The genetecist told me that some children with connexin 26 may start off with normal hearing and then lose some during their first year. I don't think the results are conclusive (there's not a ton of data with very young children losing their hearing in the first year and I guess it can be hard to determine mistakes in testing from a test with normal hearing at such a young age), but when I mentioned that passed the hearing test at 6 months it wasn't suprising to him at all. The genetecist told us to monitor our son (then 2 with normal hearing) because he could lose his hearing later (so far no problems there). Hearing loss does not run in either of our families anywhere so we were very suprised when the results came back positive. I've also been told by our ENT that most times the cause of hearing loss goes undetermined. I think we were blessed to find out the cause because I was questioning what we might have done wrong to cause this (I think it is a natural response from a parent). You may want to consider having Jakob tested for the connexin 26 - it was a simple blood test. I hope this helps. Cheryl (mom to - 4 1/2, sever hearing loss and david 2 normal hearing) > I won't rule out the gene but Jakob's situation is so different from most. He wasn't born profoundly deaf. This may be something that we can never figure out. Thanks for the website. The mercury in the MMR vaccine is exactly what I thought caused jakob's hearing loss. I'm going to try to get in contact with the woman who did all of the research on it. Thanks for your help. > > Quote Link to comment Share on other sites More sharing options...
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