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Really just need support!

Posted by on May. 21, 2013 at 2:05 PM
  • 3 Replies
My daughter just turned 7 at the beginning of the month. When she started preschool at the age of four it was discovered that there was a hearing loss. I had never really noticed anything amiss with her. When she started school they do hearing screens. They sent a letter home that said she failed the screen but they would recheck her in a year. I did not think anything of this at all and we went through the next year mostly without problem. As the summer turned to winter though and the preschool classes were forced to have recess in the gym instead of outside, she started to really struggle. She didn't want to go to school anymore, she said that it hurt her ears. I talked with her teacher and there was nothing that they would do, She was forced to go to the gym with the class, even though she would sit and cry because of the noise. I just thought that she was being stubborn and didn't want to be in there. She has always had issues with very loud, startling noise. As the winter tuned back to spring and they could get back outside the problem stopped and she was ready to go to school without trouble. When she started kindergarten, the screen was repeated. She failed it again and she was refereed off to an ear, nose and throat specialist. We went to that appointment, and they did a more in depth hearing evaluation. The doctor came in and said that it was mild conductive hearing loss in her right ear, and that the loss was at 30 decibels in her right ear and 25 in her left. He said he would see her again in six months to reevaluate her. He said that it could just simply be an ear infection and he wanted to watch her. So again, we left and I let it slip away from my mind. She did not appear to be hard of hearing at all. She is very articulate, she speaks well, and has a huge vocabulary. So we waited another six months to be seen. Six months later when we returned she had just turned six. They reevaluated her and her loss had gone from 30 decibels in the right ear to a loss of 50 decibels. She had loss 25 decibels in six months.The loss in her left remained the same The doctor said that he thinks it is otosclerosis, but he is not going to diagnosis her because she is so young. He said that every symptom that she has is classic to otosclerosis but her age. So we left, still with no real understanding of what is going on, but we did have a prescription to get her fitted with a hearing aid for her right ear, and that is exactly what I did. I took her to Miracle Ear later that same week and had her fitted with the aid. The aid came in and we went to pick it up and get it tuned to her loss. When she put it in her ear and the man started to program it she started to notice sounds that she had never really heard before. She heard the whirl of the air conditioning unit, and the sound of him typing. It was amazing! My baby girl could hear sounds that I take for granted. And in that moment when it came into perspective for me, I looked back and scolded myself for brushing it off for two and a half years. For not noticing the signs that she was giving me that she could not hear. Looking back she would turn her hear so that her left ear was dominant. She could not localize sound if I would talk to her with her back to me. She would have to search to room to find me. But I was so thankful that the aid was working and she could hear. Miracle Ear does screens on her every six months. They did one in January and the loss was the same as it was when she got the prescription in June of the past year. The hearing aid is working, and there was not any new loss! We went a whole year without seeing her specialist. We just saw him again at the end of April. They did a new hearing screen, and before they ever did it, I told them that there was new loss. I have learned to really observe her. And even with the aid in she was starting to turn her head again to the left. She was saying "what" and "huh" a lot. I had to make sure that we were face to face to talk. I could not have my back to her, and she could not have her back to me. She was getting in trouble at school because she was not paying attention. So they did the tests and she went from 50 decibels down to 70 decibels. She has sever loss in her right ear and moderate in her left. She was at 30 decibels in her left ear. So we saw the doctor. Our appointment was at 3 with him, and he did not come into the room until 530. When he did come in he said "she looks good, we will reevaluate her in a year and see how she is doing" I wanted to scream. Really? She has lost 40 decibels in a little less than a year and you want to just wait and see how it goes? He told me there was nothing that could be done, it is the progression of hearing loss and otosclerosis. I then asked him if he was diagnosing her with otosclerosis, and he said no not yet. He told her that he was going to wait until she is older and let her make the decision weather or not she wants to get a stapedectomy to try to regain some hearing. I was furious at this. I do not want to wait until she can no longer hear to try to fix the problem. But he was gone, out of the room to put us on the schedule for next April. I left the clinic and came home to research and find a new doctor, and I took her for a second opinion last week. The doctor was amazing! He talked to me, he talked to her. He said there is no denying the loss, but if she were his daughter that he would want to know what is going on. That is exactly how I feel about it. He scheduled her with a specialist in Pittsburgh PA to have an exploratory tympanotomy so that they could take a look at the anatomy of her inner ear and see if there is anything that can be done to stop, or slow the progression. He also scheduled her to have a c/t scan, something that she has not had done. I have learned that I am the only person that will advocate for my daughter. I am tired of hearing that we will reevaluate her next year. She has lost so much hearing in such a short amount of time. I am okay with that if that is what is meant to happen. We have started to learn ASL, just in case she does lose all of her hearing and can not communicate with us. I can deal with hearing loss, it is not a life threatening diagnosis, we will adapt to the situation and do anything we can to help her. I am just so frustrated with her doctors because of the whole situation.
by on May. 21, 2013 at 2:05 PM
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Replies (1-3):
GleeFan
by Member on May. 21, 2013 at 7:01 PM
2 moms liked this

I can totally understand your frustration. I am so happy you got a second opinion and  in doing that found a good and compassionate doctor. 

I think having the exploratory tympanotomy  and learning ASL are excellent ideas as well. You sound like you are on top of it mama. Your daughter is lucky to have you.  :)

poohbearkfc
by on May. 22, 2013 at 4:37 AM
My best friends daughter also has hearing loss, and like you she pushes to get what her daughter needs. Stay strong. And yes I would suggest you learn and teach your family and daughter ASL.
SlapItHigh
by on May. 22, 2013 at 7:58 AM
Good for you for getting a second opinion!
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