Special Needs

Second opinion, very confused

We adopted DD at birth and she caught meningitis in the hospital. At 4 months she was diagnosed with sensorineural hearing loss. We were told that her eardrums were too badly damaged for the cochlear implant. Our audiologist recently retired and we got a new one recently, and at our first visit with him he told us that she still might be a candidate for cochlear implant. He wants to send her in for an MRI, but right now we're just in limbo, waiting. I hate the idea of my baby girl being put under sedation for an MRI, and I have no idea what other tests they're going to do on her. We're both stressed out and confused, and I don't know what to expect.
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Re: Second opinion, very confused

  • Meningitis can cause damage to the cochlea and it can scar and start to ossificate(turn to bone) The ear drum has nothing to do with the success of a CI (cochlear implant) since the implant bypasses the conductive parts of the ear and sends sound signals directly to the brain.

    MRI and CT scans are the typical way a doctor will determine if your child is a candidate for CI's. They need the images/xrays to see how damaged the cochlea is. Time is of the essance. There is no other option.

    Sedation is scary but can be very safe. Our son just had a procedure today where he was sedated and the anethesiologist said we took a bigger risk just driving to the hospital this morning.

    There is another mom on here whose daughter had meningitus and cochlear implants. You may want to change the title of your post to read "Cochlear Implant Advice/Question" so she sees it. (hit the "Edit" text at the bottom of your original post) She also has said that the yahoo group "CI Circle" was very helpful for her. Lots of big hospitals do CI implants. Here's a link to one near me which has a lot of information that may be helpful for you.

    https://www.hopkinsmedicine.org/otolaryngology/specialty_areas/listencenter/cochlear_info.html

    I know how hard it is to learn your child is deaf/hard of hearing. Our son wears hearing aids and has mild-moderate loss. He is not a candidate for CI's, but we know a bunch of kids at his local school for the deaf who have has CI's. Take a deep breath. You will get through this new bump in the road.

    ..

    WAY 2 Cool 4 School


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  • I thought of more. I can also see why you are struggling. You have a child who is deaf and told that there is no hope of hearing and you start the journey with your Deaf child. Now all of a sudden, someone is telling you that hearing is a possibility but you have to act fast!!!! How scary is that?

    You can really only educate yourself as much as possible about the CI process and go from there. It is a lot of work to get them "hearing", especially if she has been completely deaf almost from birth. If I were in your shoes, I would take it one step at a time and just see if CI's are even an option. What does the Dr. think the possibility of success will be. You will need to get an ENT (ear nose and throat) doctor on board. Get the MRI and decide from there.

    Someday down the line your daughter will ask why she didn't get a CI. I would want to be able to erase any doubt in my mind whether it was even possible so I could give her the best answer possible. Good Luck and Hugs.

    WAY 2 Cool 4 School


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  • I agree-- they are very careful with sedation and your LO will be strictly monitored. It was hard to deal with when my little guy had tubes put in his ears (had temp. hearing loss from chronic ear infections), but the procedure made such a positive difference in his life. It was completely worth it. 
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  • I dont know how old your DD is but Arianna had an MRI when she was about 2 months old and they didnt even sedate her. They just swaddled her real tight and she did very well. Didnt cry or anything. I cant say the same for me though.

    She was sedated when she got another at 6 months and I think it was less hard on me because she didnt know what was going on, it was harder to watch her be in there looking around for me. She recovered very well.

    Good luck and I hope you get some good news! 

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  • imagepandabear12178:

    I dont know how old your DD is but Arianna had an MRI when she was about 2 months old and they didnt even sedate her. They just swaddled her real tight and she did very well.

     

    I think for a CI MRI workup they need to do a lot more image cuts in the ear area because each structure is important to check. Not sedating (especially a two year old) could give you very blurry results and would be a waste of time for this particular type of MRI.

    Nate had an un-sedated MRI at birth and then another one 6 months later sedated. The sedated one was much, much clearer to the effect that his brain abnormality diagnosis changed from missing a portion of the corpus callosum to having the entire corpus callosum. Big difference.

    WAY 2 Cool 4 School


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