3littlemen
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- Jan 28, 2011
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I just wanted to thank everyone who has given me support here and in the Parenting forum.
If you read my thread there, you will see that my son was diagnosed with permanent sensorineural hearing loss when he was 3 months and 4 1/2 months (we had 2 ABRs with 2 audiologists). Suddenly he started passing OAEs within the past month and doing very well in the sound booth in both SF and with the inserts...testing at 10dB on one ear and 15dB on the other to speech and narrowband noise.
I had to get a third audiologist (in the same practice) to get this answer. Grayson has had very inconsistent testing, but most of the testing occurred prior to 6 months of age. He is now 10 months.
The only explanation they had as to why he is testing at 10-15 in the booth with inserts and has present OAEs (prior to this month, he has not had an OAE since about 4 months of age) is that there was fluid undetectable at the limits of the equipment. It made sense because his tympanograms were a little off the past 2 visits this month, and they were supposedly up and down over the past 8 months, but I was NEVER told that, and they never even suggested it was fluid...they actually told me it was not.
So, yesterday he had tubes put in under anesthesia, and he did indeed have fluid in his left ear, which has been his worst ear on testing in the past. They then did an ABR. The ENT told me that bleeding and swelling from getting the tubes would negatively affect the test slightly, but he received 20dB for everything on the right ear, and since they are supposed to be within 5-10dB of behavioral, that correlates with the 10dB he got in the sound booth. For the left, it was almost normal except for 30dB in one place, but the audiologists (there were 2 assessing him) both feel that it was probably from the fact that he has had fluid in there and from the bleeding and swelling from the tubes. If he goes back and tests well in the booth as he has twice already this month, they are going to confirm normal hearing and he won't have to wear that one either.
I really cannot believe we have been on this roller coaster when it was just fluid. I LOVED my little boy unconditionally, and I truly didn't love him less or treat him differently because of his diagnosis, but no parent, hearing or HOH or deaf should have to go through a misdiagnosis like this. There were SO many red flags with his inconsistent ABRs (they were VERY different) and inconsistent OAEs (he could pass on the right sometimes). I'm wondering what damage these hearing aids set for a moderate loss have done...
Anyway, I just wanted to thank everyone for the positive support...you all are an amazing group of people. And if any hearing parents are out there who have had inconsistencies with tests, please get 2nd and even 3rd opinions as I did...if they were wrong with my son, they can be wrong with your child.
If you read my thread there, you will see that my son was diagnosed with permanent sensorineural hearing loss when he was 3 months and 4 1/2 months (we had 2 ABRs with 2 audiologists). Suddenly he started passing OAEs within the past month and doing very well in the sound booth in both SF and with the inserts...testing at 10dB on one ear and 15dB on the other to speech and narrowband noise.
I had to get a third audiologist (in the same practice) to get this answer. Grayson has had very inconsistent testing, but most of the testing occurred prior to 6 months of age. He is now 10 months.
The only explanation they had as to why he is testing at 10-15 in the booth with inserts and has present OAEs (prior to this month, he has not had an OAE since about 4 months of age) is that there was fluid undetectable at the limits of the equipment. It made sense because his tympanograms were a little off the past 2 visits this month, and they were supposedly up and down over the past 8 months, but I was NEVER told that, and they never even suggested it was fluid...they actually told me it was not.
So, yesterday he had tubes put in under anesthesia, and he did indeed have fluid in his left ear, which has been his worst ear on testing in the past. They then did an ABR. The ENT told me that bleeding and swelling from getting the tubes would negatively affect the test slightly, but he received 20dB for everything on the right ear, and since they are supposed to be within 5-10dB of behavioral, that correlates with the 10dB he got in the sound booth. For the left, it was almost normal except for 30dB in one place, but the audiologists (there were 2 assessing him) both feel that it was probably from the fact that he has had fluid in there and from the bleeding and swelling from the tubes. If he goes back and tests well in the booth as he has twice already this month, they are going to confirm normal hearing and he won't have to wear that one either.
I really cannot believe we have been on this roller coaster when it was just fluid. I LOVED my little boy unconditionally, and I truly didn't love him less or treat him differently because of his diagnosis, but no parent, hearing or HOH or deaf should have to go through a misdiagnosis like this. There were SO many red flags with his inconsistent ABRs (they were VERY different) and inconsistent OAEs (he could pass on the right sometimes). I'm wondering what damage these hearing aids set for a moderate loss have done...
Anyway, I just wanted to thank everyone for the positive support...you all are an amazing group of people. And if any hearing parents are out there who have had inconsistencies with tests, please get 2nd and even 3rd opinions as I did...if they were wrong with my son, they can be wrong with your child.
Good luck.
