Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 my daughter has had many ABR's they all say she is profoundly deaf. We have tried hearing aids, she has a BAHA and now we have gone for 3 different opinoins for a Cochlear Implant. We are now told by CHOPS (Childrens Hospital of Philadelphia) that ABR's in CHARGE children for some reason haven indicated one thing but are actually different. Her recent testing shows she hears at 65dcb, and the ABR from 6 mos ago showed a profound loss. After 10 years, i am going with my gut and what we see and we think she does have some hearing. Today, we went to ENT b/c the audiologist saw something yellow, and it appeared to be blocking. It ends up she had a big blob of wax, under it was " puss " and it was swollen, and bloody. HEaring in my opinion remains to be one of the biggest mysteries of CHARGE. I would go for another opinioin or 2. cathie, mom to erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 Cathie, We are affiliated with A.I. DuPont Hospital for Children in Delaware, but we live 20 minutes outside of Philadelphia. Are all of your Doctors at CHOP and have you been pleased with them? Your right, you do need to go with your instinct, which I feel is that Raegan does have " usable " hearing, however she definitely does have a loss which needs to be addressed. Thanks for your advise. Judy NPTQueenie@... wrote: my daughter has had many ABR's they all say she is profoundly deaf. We have tried hearing aids, she has a BAHA and now we have gone for 3 different opinoins for a Cochlear Implant. We are now told by CHOPS (Childrens Hospital of Philadelphia) that ABR's in CHARGE children for some reason haven indicated one thing but are actually different. Her recent testing shows she hears at 65dcb, and the ABR from 6 mos ago showed a profound loss. After 10 years, i am going with my gut and what we see and we think she does have some hearing. Today, we went to ENT b/c the audiologist saw something yellow, and it appeared to be blocking. It ends up she had a big blob of wax, under it was " puss " and it was swollen, and bloody. HEaring in my opinion remains to be one of the biggest mysteries of CHARGE. I would go for another opinioin or 2. cathie, mom to erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2006 Report Share Posted February 4, 2006 Crystal, Thanks for responding. Our girls are close in age. Have you started signing with Eva? How has she responded? We are having a review for Raegan's IFSP and we will be adding Speech Therapy. Does Crystal get Speech Therapy and Hearing Therapy? Just curious! Thanks. Judy supermama95 wrote: Eva has a complete loss in her left ear and a seveare loss in the right so we only aid the right. I dont know why they would aid an ear that is good. Maybe down the road if it gets worse maybe but if she can hear out of it then its a good thing. MAybe aid the one that has somewhat of a loss. I think your daughter will be fine and wont really need sign if she has good hearing. Good luck and I hope you get it all figured out. Crystal and Eva (9 month charger) > > Hi, > I'm writing to ask a hearing question. Some may remember me, my daughter Raegan is now 8 months,she just had Open Heart Surgery in December. I tend to lurk and don't get much time to read everything. Raegan just had her third ABR and the results indicate that her right ear has moderate to severe loss and her left ear has normal hearing. In past test the left ear looked like it was mild, now normal. I received a call today from the audiologist and she went over the results with me. She informed me that she reviewed the results with her colleagues and they feel that at this time Raegan does not need hearing aids. I am very confused because the point of this third ABR was to pinpoint a degree of loss in both ears and get aids, she was fitted for them during the test on Monday. I have spoken with my hearing therapist and she is having my Early Intervention Audiologist contact me, she did not know what to do in regards to aids as well. She did say that it could be harmful to aid the > ear that is normal. Hearing loss and amplification are all new to me, I was a special education teacher, but never had any hard of hearing students. I am just wondering if anyone has had similar ABR results and what you have done regarding hearing aids. > > Thanks, > Judy > > > Quote Link to comment Share on other sites More sharing options...
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