Is there something wrong with my daughter??? - Hearing Disorders Message Board

barton93 · 07-30-2004, 12:30 AM

My daughter is 10 years old and has lost about 85% of her hearing bilaterally and wears hearing aids in both ears. My concern about this is that she was not born this way. She had frequent ear infections and strep throat as an infant/toddler and when she was 2-1/2 years old, she had her tonsils removed. At that time the doc decided to do a hearing test to see if any damage had been done from all of the ear infections and the test showed that her hearing loss was very minimal (she was still in the normal range but at the bottom end of it) so the doctor decided to put tubes in her ears while she was under anesthesia getting her tonsils out. Six months after the surgery, they did another hearing test just to make sure that everything checked out and all was well. She was 3 at that time.

When she was almost 6 years old she failed a hearing test at school. Right around that same time my husband and I had begun thinking that something wasn't right because she didn't seem to hear us too well. So, we took her to the doctor and discovered that she had a mild hearing loss and she began wearing hearing aids in both ears.

Within a year and a half she went from about a 15-20% hearing loss to about an 80% hearing loss!!! We have no idea why. We had her to every specialist imaginable and no one could figure out why her hearing kept deteriorating. Now she is 10 and is at about an 85-90% loss.

Now, recently............she has been complaining that she can't see as well as she used to, so we took her to the eye doctor and they said that she is farsighted.....so now she wears glasses as well. The doctor seems concerned that there is something wrong with her and wants my husband and I to take her to a specialist to see if there is something neurologically wrong with her! So, now I am spooked.

I also noticed looking at her hearing tests that she has had over the years that her hearing loss is identically in both ears. The hearing deteriorates at the exact same rate in both ears! When you look on the chart her ears on literally on top of one another as far as loss goes. Does this seem unusual???

Also, I had read somewhere on the internet that meconium ingestion in newborns can lead to problems like these, but now I cannot find that article anywhere. I have no idea what website I saw it on. My daughter did ingest meconium during her birth. Anything to support this?
Maybe I am just freaking out, but now I am scared that something is wrong??? Does anyone else out there have a similar experience? Or have you heard of some sort of condition out there that I should look into?

Biblophile · 07-31-2004, 08:17 PM

Hi Barton,
I wish I knew some answers for you. However, postlingal childhood deafness isn't as rare as you might think. There are still quite a few postlingals out there and as I recall they make up at least 5% of childhood deafness cases.
I do know that in about 20% of all childhood deafness cases, hard of hearing kids will eventually become deaf. You might find a cause but you might not. Most disabilties are idoipathic meaning that doctors,researchers and scientists don't know what caused the disabilty.
Has your daughter been tested for Usher's Syndrome? This is a syndrome which causes deaf-blindness. I have heard of some scary syndromes which cause deaf-blindness and many of them are those rare degenerative nereological ones like that little boy had in Lorenzo's Oil. I can totally 100% understand your fears and concerns in this case. I do hope everything will be allright. On the other hand, if your daughter's schoolwork is doing OK, then I wouldn't worry that it's one of those really scary disorders. Most degenerative disorders start out subtly and then go downhill.
Maybe a good idea would be to hook up with some parents who are also dealing with deaf and hard of hearing kids. Try the American Society for Deaf Children's parent-deafhh ********. It is an excellent ********, and there are even some parents of postlingally deaf kids on it, as well as kids with progressive losses.
I know it's in a parent's nature to worry....but your child is still going to be the same kid she always was....and she'll be a regular kid. Having additional complications isn't going to change that. She's just like anyone else except that she wears hearing aids. And I have to tell you, that I grew up in a VERY snobby town, and grew up VERY self-conscieous about my aids. Every single time I run into someone I knew from back then they always say " I never even thought of you as "different" b/c you wore aids. I remember running into my friend a few years ago. I was telling her something about how easy it was to get services for disabled students (I'm in college) and Carla looked at me funny and said " You're disabled?!?!?!?"

Last word of advice.....you may want to look into things like ASL and things like that to enrich your daughter's life and give her an edge. I know the thinking is that postlingally deaf kids don't "need" things like Sign and exposure to deaf culture....big deal...it might give her an edge and it might really really help her. Hope this helped!

barton93 · 08-01-2004, 11:58 PM

Thanks so much for your response. I'm am definately going to do my homework and see if there is some explanation out there. Maybe it is just coincidence that her vision is changing, but has nothing to do with her hearing. Either way....I agree it isn't going to make her any less of a person. It is just a scary thing to deal with when it comes to the emotional aspect of it. My daughter has moments when she is just very distraught over it and my husband and I do all we can, but we just cannot answer any of her questions because we don't know the answers.

We have been told by all of the doctors that we've seen that it would almost be impossible to determine what the cause of her loss is, unless we knew of family history of the same thing or that my daughter sustained an injury or something of that nature.

She does have a lot of problems in school. She will be entering the 5th grade in the fall, but she is technically only at about a 3rd grade level. She is in a deaf/hard of hearing program in school and I know that they do teach at a slower pace because of the disability. The school tried to mainstream her for a couple of classes and her grades dropped, so they pulled her out of those classes for now.

She is also fluent in sign language. I love that she knows it, whether or not she needs to rely on it. My husband and I as well as other family members, including my son have been taking sign language classes too. Some of the children that my daughter is friends with through school rely on sign language at home, so us knowing sign language means a lot to my daughter for that reason as well.

Thank you so much for the info you have given me. You did help me out.