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CI and Down syndrome


Mary Beth E.
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Hello! My 7-year-old daughter is scheduled for her CI implant in November. She has profound SN SSD and also has Down syndrome. We are currently trying to decide on which brand. I’m leaning toward the Rondo. What stood out about Me-Del for you/your child? What questions are important to ask the rep? Does anyone here also have a child with Ds? 
 

Thank you in advance! 
Mary Beth E. 

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@Mary Beth E.

Welcome to HearPeers!  Wishing your daughter the best on her CI journey.

I chose Med-El for their internal electrode array options.  I love my hearing with CIs and am very thankful.

Rondo is a very simple processor to use.  Just be sure to secure it with one of the attachment options.  7 year olds are active!  Smile

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Thank you very much! I must admit it’s tempting to focus on the external processor and “add-ons”, I’m trying to learn more about the internal processor features for each brand since that seems way more important! 

Can you use Rondo with other hearing aids! How important is “synchronization” between both CI and hearing aid on other ear? 

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@Mary Beth E.

It is tempting to compare external processors and connectivity options instead of the internal components. But in reality, we hope to use the internal components for our lifetimes.  The external processors are updated every 5 years or so.  And the connectivity options are changing all of the time.

Med-El has a way for our audiologists to set our Rondo 3 or Sonnet 2 processor to match the delayed timing of the hearing aid.  It is in the software program our audiologists use to program our processors.

Let me link you to info about that 

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@Mary Beth E.

I tagged you on matching the timing of hearing aids 

and this is information about Med-El ‘s internals

https://www.medel.com/hearing-solutions/cochlear-implants/reliability?fbclid=IwAR0P_bBk7p2yDYtfmPeAuMpZf70N1nmAjHzopwSdaAXHCqON7i5QkakAMUU

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Hello!

@Mary Beth E.

My husband and I definitely had a hard time with this decision. Go with your gut. In the end we choose Med El and here's why:

  • Advanced Bionics (AB) - We LOVED the rep we had for them. If we had to choose a company on rep alone they would have won hands down. The rep has nothing to do with the technology and how it works for my daughter so we put that aside.
    • We also loved that they are the only company with a pediatric processor. They're theory about how people hear with the T-mic made sense to me. We did not like that they did not offer and would never be offering a stand alone processor. My daughter was implanted at a 2-processor site so we ended up with both an over the ear processor (Sonnet) and the stand alone (Rondo). I just couldn't discount the fact that kids can be mean. While I hope my daughter grows up to be strong and self-advocating for herself, I have no idea today what kind of insecurities she'll have in the future or what kind of preference she'll have. Eliminating the ability to hide the processor in her hair with the stand alone (Rondo) was not a decision we wanted to make for her. 
    • The other reason we ruled out AB was that their recalls were so recent. While I realize all of the companies have had recalls, I just wasn't comfortable with how near theirs was. 
  • Cochlear Americas - Cochlear is the majority brand were we live. We HATED the rep. She spent more time talking to us to us about her recent vacation then the actual technology. This was a similar experience with other parents we connected with during our journey. We called and got a new rep who was ok. The second rep felt like she was just moving us along in the process. Like there was no other choice to make but Cochlear. 
    • Cochlear focuses a lot on the extras. The blue tooth or accessories. They almost sold us on their water wear, and then I was like well.. the majority of the time my daughter is not actually in the water. Plus Med EL's Rondos can go in the water without water wear. Where they completely lost me was after I connected with another mother who's child had Med EL told me that her child could hear well enough without the accessories. That her child did not need to blue tooth to the iPad because she could hear it without it. That's when it really hit me. I want my child to be able to hear well enough without the accessories. Without the bells and whistles. Yes they're nice to have, but they are also the easiest thing for companies to improve/add/change later - the hearing technology is not.
    • We also felt that they had not updated their outside processor in quite a few years so based on our timing of implantation and future upgrades, our daughter would always have old technology.
    • Their over the ear processor was also very wide and looked ginormous on our daughter's ear.
  • Med El
    • We like everything the internal implant had the best out of the 3 companies: The MRI capabilities, the longest array, etc. We liked how there's an article out there somewhere about hearing music and sounds are better. The difference being described to us as live music vs radio quality. We liked how the Med El rep was a speech therapist by background and could explain to us more in depth how it worked and her own personal experience with kids that were implanted being successful faster. 
    • The water wear for the over the ear option is well... like a wet baggy that needs some work but to be fair... my daughter pulls off headbands/implants in the bath anyways so why bother?

It was a really hard decision and hard not to get distracted by the shiny accessories of the other ones. We had to really talk about what was important to us which was the piece being implanted in our daughter and the overall hearing she would receive. Anything else can be upgraded. 

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@Nicky Hemann

How are things going with your daughter’s CI journey?

I have both Rondo and Sonnet processors.  
 

Rondos in waterwear are fabulous!  It takes a few times to get comfortable with putting on the waterwear cover but after that it is much easier to do.  I LOVE how things sound with Rondos in waterwear.  Incredible!  Because they sink like stones if knocked off, I put my Rondos in waterwear covers… then in eargear covers with tether and clip (clipped to my suit or water shirt)… then under a nammucap (very comfortable).  Things sound terrific and I have been riding ocean waves every year with great success.  I love hearing in the water!

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Nicky, 

This is the exact information I have been needing from a fellow parent! Thank you so much for taking your time to reply to me with such a balanced and comprehensive report on each brand. I really appreciate it! I have yet to speak with the reps, but they have reached out to me and we are just looking for a time to meet. I just appreciate this forum as an opportunity to ask questions about Me-Del. 
 

We are targeting the stand alone Rondo processor for her on her left side, our audiologist thinks that the over-the-ear option will be too tricky for her with her sensory issues and her glasses.
 

Thank you, thank you in advance, for future questions I might have as I get further along in the decision process.

 

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