Is a Cochlear Implant Appropriate for a Highly Active Kiddo???

[Atlanta]

New here and looking for some input from other parents! 

My daughter is 4.5 yrs and was diagnosed with profound unilateral sensorineural hearing loss in the last year but has clearly been suffering from loss for longer. Her other ear is unaffected at this time but we have been told this could change as she ages. We are very closely leaning towards getting a cochlear implant however I am concerned about making this decision for her without taking everything into account and then having her resent that choice. 

I am particularly worried about her ability to comply with the restrictions around activity, especially in the time immediately post-op, but even extending to regular restrictions with contact sports. This is a kid who just WILL NOT sit still. She is excessively physical and utterly fearless with every interaction with the world and other people; in fact, we had planned to put her in martial arts before all this to help her learn better boundaries for herself and others. She has siblings and they regularly wrestle/tumble/etc so removing her from the situation is not much of an option, at least not for more than a few days.

She is also extremely sensitive to sound and environmental changes. Since she still has normal hearing in one ear, I am worried about causing a long-term problem (like tinnitus) in a situation where intervention isn't absolutely necessary. While I think the potential benefits of gaining bilateral hearing would be incredible and the earlier the intervention occurs, the better, is this process even going to be possible?

[Mary Beth]

@Atlanta

Welcome to HearPeers.  It’s great that you are considering all possibilities for your daughter’s single sided deafness.

There are various ways of securing CI processors in place for young, active children.  Med-El has several wearing options and you will find lots of other creative options online in Etsy shops- many designed by parents of young CI users.

Wishing your daughter the best.

[Atlanta]

Thank you for the suggestions Mary Beth. I will look into those. We are hoping that an implant will help her with sensory issues long-term, but I can't help but think it's probably going to be a VEEEERY long summer of recovery and post-surgical restrictions. 

[Mary Beth]

Keep us posted @Atlanta!  And good luck!

[Jennifer-]

My son also has profound unilateral sensorineural hearing loss in his right ear and completely normal hearing in his left. He was implanted with his cochlear implant a little over a week after his 2nd birthday. We initially tried a bone conduction first, saw no improvement and decided to move to receiving a cochlear implant. He is non-stop active from the moment he wakes up. If he’s not running and jumping off the couches or at the park, he’s flipping upside down, jumping in the trampoline, hanging out in his swing or spending hours in the pool. He has the new Rondo 3. After his  activation day yes it took a some time for him to get adjusted wearing it. He would only do a few minutes at a time. Now 7 months later he’s wearing it for 12-13 hours a day. There are different tethering devices or hats available, but I made him his tethering device which is more secure. As for the surgery, he was perfectly fine the following day and recovered quickly. Best of luck to you!

[Mary Beth]

@Jennifer

I am interested in info on the tethering device you made.  Will you describe it and post a picture?

Wishing your son the very best!

[Atlanta]

@Jennifer-

Thank you so much for that info. It is very helpful to hear about the recovery and how your son has adjusted. I would be interested in seeing the tethering device you mentioned if you would be comfortable posting a picture! We had a surgery date that unfortunately had to  be rescheduled so it looks like I have a little more time to be ready. 

[Jennifer-]

He’s at daycare right now but I’ll try and snap a pic of one of the makeshift one I have on him when I pick him up. A lot has been trial and error in terms of material and length and fasteners to the Rondo itself as well as what I thought would be secure, but safe in case he pulled them off. I literally went to the local craft shop the week after he got activated and searched for things I could use. The elastic tether that comes with the new rondo 3 snap pretty easily if your child doesn’t like wearing their implant and you can only Retie it so many times before you run out of length. And I know some posts from other places I searched on the web said fishing line, but wrapped enough times or pulled hard enough even by an adult finger will cause damage so I couldn’t even imagine my hyper son not getting hurt with it. The safest one I made was with cord using the original C-clip that attaches onto the Rondo itself. The cord was thin enough to loop through the holes of the clip, which I then added extra cording after and weaved them together to thicken it enough that it would hurt his fingers, wouldn’t snap apart, but light enough that it didn’t add any additional weight or pull to the Rondo. I also still used the clothing clip as it’s been the safest option for him until I can find another clip to my liking. That one worked the best. 
The tether he has on right now is an experimental one that I’m trying to see if he likes, using leather cording which is still lightweight but thicker. I was planning on trying to do interchangeable tether designs so he can pick which one he wants to wear later to go with the skin on the cover of his Rondo, but I’ve been busy working in the hospital and his current tether works fine. 
 

There are a lot more options for tethering like hats, headbands, hair clips for over the ear devices, but not too many options for the rondo, or at least that I couldn’t find.  I’m sorry the surgery got rescheduled. If you need more info you can message me. I was so lost at first and honestly still feel like that sometimes lol. I ended up finding out a friend of mine’s son had bilateral cochlear implants not too long before my son and she has really helped me. It’s always good to have someone to talk to that can relate. 

[Mary Beth]

@Jennifer

I am always so impressed with the solutions parents come up with.  Looking forward to your pic when you can find time to post it and wishing your son the best!

[Jennifer-]

Rondo3 tether

hopefully this link works lol

[Mary Beth]

@Jennifer

thank you!  The link works fine.

Are you clipping this to hair or a shirt? If you are clipping it to a shirt….the clips on ear gear covers are very secure.  I use those in the ocean and they never detach while I ride the waves.  In my hair…. I have modified secure lines to use wig clips.  In case you are looking for other clip options.  I really like the thin leather idea.  Where did you get strips of leather like that?

 

 

[Jennifer-]

Oh yes, I’ve seen those clips. His hair is pretty fine and while he tolerates the rondo on his head, he doesn’t like much else there lol. The leather cording I picked up from I think Michael’s if not Joanne Fabrics.