DD's hearing - UPDATE

[mom1mg]

Updating on DD and more questions... So it seems like it is a neuro or developmental issue that was causing her to not react to sounds in her left ear. All of a sudden she hears EVERYTHING. She didn't have an ear infection, there was no cause for her profound inability to respond to sound on that side. Up to the 10th of Feb she wouldn't respond to any sound at all on her left side including an IPOD ear bud with metal music held next to her, clapping, etc. On Feb 11th after supper out of the blue she responded to something she heard her brother do and her hearing has only improved from there. She can now recognize her name being called from across the room towards her left ear quietly!!! So long story short her ped (given our very medically complex family history) and some other issues she is having with swallowing, low tone, and not making really any sounds is sending her for a whole swack of testing including DNA testing. She has a swallow study next week and will continue to work with the speech therapist. Right now our speech goal was to get her copying movements. She could never copy sounds because she didn't know how to make them so we were to start by getting her to copy large body movements like clapping so she would know how to play the "game" and we can eventually move towards facial expressions and sounds. We are two steps forward in her hearing but one step back in not knowing what caused her to have ten months of hearing loss or inability to respond. She continues to be very visually aware, to explore her surroundings and to be VERY happy although super quiet! Oh and she LOVES music now and bounces up and down to "dance"













I see there is another thread here and I didn't realize we had so many DS families that could help point me in the right direction!

Our youngest DD is 9 months. She is followed by our version of early intervention because she had low tone and wasn't meeting her physical milestones. She JUST learned to sit up and crawl this week

DD doesn't babble in the traditional way. She makes a raspberry horsey noise and sometimes an aahhhh or eeehhh noise and the occasional growl or grunt. She also didn't seem to respond to a lot of noise but we have a super busy house with a LOUD dog so I thought maybe it was just too much for her and she was ignoring things as there was just too much going on. She is SUPER content and a very happy baby who has AMAZING eye contact - she can catch your eye from across a room if she wants your attention - like her vision contact seems to be WAY better then our other kids at the same age.

Anyway the EI worker decided we should do a hearing test at the health unit just to make sure that everything is ok. The test didn't go well. It was in a booth and DD watched a toy infront and then they would play a sound and a toy would light up when she turned her head. All the ones on the right she did really well. She missed almost every single one on the left. EVENTUALLY at the very end of the test she would sometimes turn RIGHT when there was a noise on the left but I think it was more because she was getting bored and wanted to find the toys. The lady also stuck a probe in her ear of somekind. So at the end of the test they said "she can hear fine but she is at about a two month level for her ability to respond to sound". That was it - I was shocked and didn't think to ask what to do next and they didn't give me any follow up or anything.

I went to the Dr and we are being sent to the ped. The dr didn't have the reports but wasn't impressed that the health unit didn't seem concerned at all that DD isn't responding normally.

Just to check DH and I took an ipod and held the ear bud up to DDs ears. On the right side she turns to the sound and on the left she doesn't respond at all. Same with clapping, whistling she doesn't even blink. Then DS played a game with her tonight where he was making a babbling noise and faces and she laughed everytime he made the noise. DD thought she could hear! But then I got DS to do the exact same motion with no sounds and she laughed just as hard so I don't think she was actually responding to the noise but to the vision part of the game.

Anyway in a few weeks we should have a date to see the next dr and I don't know what to do - What tests should I ask for? Who should we try to see? ENT, NEURO, speech, the early hearing loss program? Is there anything else I should or could be doing before we get to see the Drs as it will likely be a month or more before we see all of them?

[BCGamerMom]

Your IDP worker (I assume you are working with IDP) will get the results from the health unit, so should your doctor and the pediatrician if they were on the referral form and they will be able to give you more information. I'm amazed the health unit said anything to you at all, when my dd had the same test done last year (In Vernon) they just told me my doctor and the SLP would get the results.

[mom1mg]

Originally Posted by BCGamerMom Your IDP worker (I assume you are working with IDP) will get the results from the health unit, so should your doctor and the pediatrician if they were on the referral form and they will be able to give you more information. I'm amazed the health unit said anything to you at all, when my dd had the same test done last year (In Vernon) they just told me my doctor and the SLP would get the results.

Really. Huh - we've had hearing tests before with other kids and have been told they were fine at the health unit but that was a long time ago. DSs 1 & 2 have/had speech issues. Maybe they are doing things differently now though. It just made no sense to me the total lack of a follow up plan. I wish they hadn't said anything then. I think my reaction would have been the same regardless though. It was obvious to me that the test didn't go normally. I already have a SNs kiddo so I wouldn't have been calm enough to quietly wait for a report anyway. We have a brand new family Dr who didn't even know we were doing the tests so it is good to get her up to speed. My ODSs SLP suggested following up on a medical route but didn't give specific suggestions since DD isn't her client and isn't in the age range she works with. I already mentioned it to our IDP worker as well obviously but they are trained in general child development (I've seen their training program I used to work in the office of an IDP center) so she is talking to their SLP because she didn't have any suggestions. I've heard from a few people to "practice listening games" which is about the stupidest advice I could imagine since 1) she can't hear and 2) I don't know what I am supposed to be doing. (Sorry that sounds terrible but it just doesn't make any sense to me how we are supposed to be "pointing out sounds" to a child who doesn't RESPOND to sound. She doesn't aknowledge any sound even on her "good" side she doesn't really seek out noise or look for where a sound is coming from etc and everything is like "when the phone rings help baby identify the noise" but she doesn't even know the phone is ringing. Her only response to sound is on the right side and is more like a reflex - blinking with a loud noise etc nothing that I can work with without some serious guidance.) We talk to her and play with her and I will learn sign cause that isn't going to hurt but I'm a hit the ground running kinda person so I need to know what else my future holds from BTDT mamas

ETA - I have a kiddo with autism and this isn't it. She is VERY engaged visually - loves people and faces so it isn't a lack of wanting to respond. I *think* she isn't mentally challenged - obviously in a tiny one it is hard to really tell but I *think* it's all hearing related other then her tone issues which are not rare for our kids (4 out of 5 are IDP babies and only one has any sort of congnitive issues.)

[mibarra]

If you are concerned you will want an Auditory Brainstem Response (ABR) from an ENT. If she does have hearing loss then you'll also probably want an Audiologist and to begin SLP services. That's about the age my DD was identified. Please feel free to PM with any questions!!

[mom1mg]

Originally Posted by mibarra If you are concerned you will want an Auditory Brainstem Response (ABR) from an ENT. If she does have hearing loss then you'll also probably want an Audiologist and to begin SLP services. That's about the age my DD was identified. Please feel free to PM with any questions!!

Thank you! I'm googling now I didn't understand the test we already did - specifically how after they put a probe in her ear they decided she could hear even though her responses indicate she can't. It makes me think it must be a neuro issue and not a physical issue with the ear itself. I KNOW I should just wait but it takes months here and if I know what I want I can usually force the process to go a bit faster by looking for alternate routes and providers.

[mibarra]

Originally Posted by mom1mg Thank you! I'm googling now I didn't understand the test we already did - specifically how after they put a probe in her ear they decided she could hear even though her responses indicate she can't. It makes me think it must be a neuro issue and not a physical issue with the ear itself. I KNOW I should just wait but it takes months here and if I know what I want I can usually force the process to go a bit faster by looking for alternate routes and providers.

It is very difficult to test babies. The sound field test, when they turn to beeps, is not always as accurate. They don't look JUST for turning towards the sound in a child that young. They also look for subtle cues like startling, changes in expression, and direction of eye gaze. The problem is probably with the cochlea, called Sensorineural Hearing Loss, this is most common, rather than some kind of anatomical problem with the ear itself. Neurological would be Auditory Neuropathy, which is more rare. My DD has both. They will probably want to repeat the booth test.

[mom1mg]

Thanks for your time! Can you tell me about your DD? Does she have any hearing? I'm just not sure what I am supposed to "do" with my LO I always thought she was "mellow" and "ignored use because it is so crazy here" but now I know that she isn't just hanging out because she doesn't feel like making contact with us. I'm trying HARD to make way more visual contact - like if I walk past her while she is playing I will MAKE SURE I catch her eye but is there anything else that helped with your DD?

[mibarra]

Originally Posted by mom1mg Thanks for your time! Can you tell me about your DD? Does she have any hearing? I'm just not sure what I am supposed to "do" with my LO I always thought she was "mellow" and "ignored use because it is so crazy here" but now I know that she isn't just hanging out because she doesn't feel like making contact with us. I'm trying HARD to make way more visual contact - like if I walk past her while she is playing I will MAKE SURE I catch her eye but is there anything else that helped with your DD?

We began signing. Signing Time videos are awesome for basic sign. We immediately got her hearing aids and began SLP therapy. It took them a long time to figure DD out, but turns out she was basically deaf and now has cochlear implants. She hears great and talks a ton now with her implants, but we still use sign too because she doesn't wear them sleeping or in the water. She goes to a special preschool program designed to teach oral language to deaf/hearing impaired kids.

There is such a WIDE range of hearing impairment, and what you do will depend partially on how much hearing your child has. Just ask lots of questions!

It is important to follow up. Kids learn oral language by hearing it. So it's important to get any issues identified and begin any necessary therapy soon.

[mom1mg]

Thanks. It seems like DD is pretty affected. As I said I thought she was just mellow cause she didn't seem to care about the noise around her. She appears to have one good ear but even with hearing well on that side she ignores or doesn't hear A LOT of what we are doing. I suppose it could be developmental but even then it seems like we are in for a long road. At least she is happy and trying to engage.

[mibarra]

Originally Posted by mom1mg Thanks. It seems like DD is pretty affected. As I said I thought she was just mellow cause she didn't seem to care about the noise around her. She appears to have one good ear but even with hearing well on that side she ignores or doesn't hear A LOT of what we are doing. I suppose it could be developmental but even then it seems like we are in for a long road. At least she is happy and trying to engage.

If it's truly hearing loss (and not fluid build up due to chronic infections), it won't go away or be grown out of. My father was also born deaf in one ear, and while he's mostly fine, he does have 2 issues:

1) He can't localize sounds (tell the direction they're coming from)

2) When it's noisy, he has MUCH more trouble hearing than the rest of us. He always picks his seat 1st at restaurants so his "good ear" is towards us or he can't hear us talk.