Sunday, October 4, 2009

Standstill

I'm looking for some advice and guidance. Aiden has been hearing for almost 7 months with his right CI and just over 5 months with his left, but I feel we're at such a standstill.

Aiden had a mapping appointment a couple of weeks ago. I didn't feel my usual warm and fuzzies leaving that appointment, but then again, Aiden's booth test results weren't what I was used to seeing either, not bad at all, just not as good.

His last mapping was the beginning of June, in which nothing was changed. Aiden's audiograms have been at 15 to 20 db, sometimes dipping to 25db, since each ear's third mapping appointment. This recent appointment (his fifth soundbooth since right activation and third soundbooth since left activation) he was hitting the higher frequencies at 20 to 25 db, but the lower and mid frequencies he was at 25 to 30 db. I know this is still good ... amazing in fact, but to me, it was a drop in over 10 db at some points.

When I brought up that his past audiograms were from 15 to 20 db (with a speech awareness threshold of 10db), she told me that they don't like to see audiograms at 15db because hearing with a CI can get distorted at this point. Is this true? And if so, why was it okay in the past that Aiden was testing at this level and all was great? (his current audi is on leave, so this was a new audi that I felt very comfy with).

I walked out of there knowing that 25 to 30 db is still SO amazing and also took into consideration that Aiden was not his typical "great, easy to read" tester. There is typically no question when he hears a sound, as he looks right at the speaker it comes from. This time, he played shy, hung his head low. The audi. said she could tell when he heard something based on his eyes.

So my questions:
  • How often are your child's maps adjusted?
  • Have you ever heard that it's "not good" to be at 15db or lower with a CI?
  • How long do your child's soundbooth/mapping appts typically last?
  • What should I be looking for at this point to tell if Aiden's maps need adjusting?
  • LVAS/EVAS moms/CI users - do you see good hearing days and bad hearing days due to the LVAS/EVAS?
  • Did you find your child went through standstills with language development?
  • The only lings Aiden is repeating at this point are /ah/ and /m/. We hear very few /oo/ in his speech, but no /s/, /sh/ or /e/. Should I be worried about this?

The other reason I'm getting more concerned about his recent results is that he seems to be at a standstill with language. Last month we had a small language explosion - new sounds, new words, and all with good consistency. In the last few weeks, we've seemed to have lost it.

For awhile, he was always saying "mil" (milk), "ah-da" (all done), and "um-um" (yum-yum), among a few others. He's not saying these nearly as much as he used to. Then again, we've began to focus on new vocabulary feeling he had these others down quite well. He has picked up a couple new words, such as "baaaa" (for sheep), "mmmma" (for cow), and "bock bock" (for chicken - thank you Elmo). We've been working on these "new" farm animal sounds since day one though. The only new vocabulary he's even tried to imitate is apple, and that was just a couple times. It seems he's resorted back to his good ol' "mmmmm" for everything he wants lately. I hold out though and keep repeating "more" or "milk" or whatever word it is I know he knows, and sometimes, he'll eventually say it.

This is such a hard stage. At home, when I do the lings, he responds by pointing to his ear and saying "ah-na" (I heard that). So I know he's hearing them. I just wish he could tell me what they sound like to him. I wish he could tell me if something sounds funny. It just all seems like such a guessing game right now. Ugh.

14 comments:

Naomi said...

I can't answer most of your Qs, because we've only been doing this for a month, but our audiologist says the same re:dB. She said that research has shown that being able to hear at less than 15-20dB with a CI is not useful and in fact can make speech discrimination worse (because they are hearing too many of the meaningless background sounds).
Re: MAPing - our centre seems to do more than most, but their standard schedule is weekly for 6 weeks, fortnightly for a few months, and then monthly for a year. I guess in regards to language development, most normal kids have periods where they don't seem to be learning anything expressively, but then a few months later they have an explosion of language. Big hugs to you, and I hope that you get some answers soon.

Melanie said...

Noah was going to the audi every month for at least the last 8 but now we are only going every 3. He had lots of issues, though. I think typical is every 3.

15 dB is AMAZING- but it's not everything. Is his audiogram "flat" across the frequencies? If he is dipping in the highs, that's why he could be missing the /s/ and /sh/. Peas is still not consistently hearing /s/ from far away and he is 12 months out. Takes a long time.

Our appts. are usually an hour. Depends on how long Peas will sit.

Peas has LVAS too- but since he has no residual hearing left, I assumed it wasn't an issue? Maybe it is and I need to ask?

Peas has been hearing for 12 months and he is just now having a language explosion. All kids are different.

Peas repeats all lings except /s/ He can't figure it out. We are working on it. Make this the focus of your AVT sessions.

Hope that helps! :)

Kel said...

Here's where I'm at... Danny has just hit the point where he goes in every 2-3 months for mapping rather than monthly. He hits 20-25dB with his map during testing, speech thresh hold a bit lower than that...and he is not a very easy tester, just barely starting to do VOA. I'd never been told that 15dB or higher is bad; they seem to be quite happy with where he's at, explaining that he hears more than he responds to right now (which makes sense, I guess?) Our soundbooth appointments are scheduled for an hour, and that's usually enough, though we've done everything from half an hour (when he's being particularly uncooperative) to an hour and a half.

Aiden is a fair ways ahead of Danny for expressive language. (Danny is 7.5 months hearing bilaterally.) He repeats /ah/ and /e/ for lings, and has vocalized /m/ and /oo/ but doesn't repeat it on checks. That is his only word. No animal sounds, no all dones, nothing but /m/ for more. I say that because hopefully it will give you a bit of comfort that things are going well with Aiden, even if I'm sure they aren't as fast as you would like at times. (Don't we always wish for more, better, faster sometimes?)

Language standstills are quite normal, by the way. Both of my boys have had them. Eric (my hearing son) would master a word and then drop it for a month or two while he worked on new ones.

leah said...

We definitely have language plateaus in our house- Nolan will stay at the same "level" (or even drop a few words), then several months later have another "explosion." Sometimes I think language acquisition isn't so much like climbing a ladder as it is climbing a zig-zag.

Renae said...

Everything listed here by the other mommies is what we are told too... One thing our SLP always tells us and has from the very beginning (since Briggs has been 3 months old)...you will see huge explosions and then there will be a stand still...if that is the case, don't be alarmed... it is very normal and you have to remember that Aiden is technically only 7 months old when it comes to hearing... 7 month olds don't do as much as Aiden... he'll get it and you'll see a big jump... the most important thing is that the child is understanding... the words will come!!! Our mapping appts. last 2 hours and they were at 1 week, 1 month, 3 months, 6 months and then yearly. Because the implants were placed on seperate surgeries both implant maps are accessed at each mapping appt. so we get a little bonus. :)

tammy said...

Thanks so much for your responses ladies! This is very helpful. I have to say too, I am SO proud of all our munchkins!

Question:
- When you are in for a mapping appointment, do they adjust the programs? They haven't made any adjustments to Aiden's maps at all (except for the initial "turning up" programs we went through in the beginning). This is what I'm most concerned about. Even Aiden's AVT was a bit perplexed.

It is so good to hear that other kiddos, hearing included, go through these plateaus. Aiden's siblings are older and I just don't remember this happening.

Melanie - I didn't know Peas had LVAS?!? Just one more thing in common! ; ) I have heard that even with CIs, their hearing can flucuate. Aiden has an ear infection right now and I definitely see a difference in his balance and he really fought me putting on his CIs. I was going to post about this on the LVAS list serv.

Kat said...

Our audi is very happy to see Thomas at the 20dB level bimodal with LING & then speech at lower levels. She explains it to me as when the babies are tested as much as our kiddos are that they become accustom to hearing the various sounds and they are simply not as interesting as voice -- our babies learn very quickly how to "play" the booth tests. Do you have a second audiologist in the booth with you? Our audi runs the booth & we have another audi "reading" Thomas.

Regarding EVA/LVAS, I was told by Dr. B that it won't fluctuate any more because any residual hearing was taken away at surgery. I see the fluctuation in his HA ear only.

Thomas has gone in fits and spurts on expressive language, too -- even before CI. For example, he was saying "bye-bye or bay-bay" all the time for weeks. Then, it was gone for two weeks and I just got it back in our session here at home this morning. Also, I found success switching LING up on him with different airplanes, train versus cow for (oo), I would go to sleep at (sh) versus having a baby, etc.

Okay...so all this being said, you know that your gut is one of the best tools that you have. Keep a journal daily as to what you're seeing and hearing from him. After two weeks, if you don't see an improvement, I'd contact the audi again for additional mapping sessions & booth testing.

Kat said...

Sorry to post again, but you got me thinking about the acceptable levels of hearing across frequencies. I remembered that Jane Madell did a talk at Cook's about technology & made me remember her referencing the "speech string bean" not the "speech banana" as an acceptance level for hearing.

Essentially, she looked at the very top of the speed banana as the acceptable levels for hearing -- nothing lower than 20db across all frequencies was considered success in her mind.

Again, sorry to repost...

Bright Family said...

There have been many times in the past two years that I have felt this way and all I can recommend is to wait and see that he has been learning so much during this "standstill". I'm sure he is taking everything in and it will be only a short time before you see another explosion!

Our appointments usually last an hour and our audiologist does not want to see 15db when testing in the booth. She said that when they hear "too good", they become sensitive to all the noises around them and may start disliking their equipment.

If Aiden is responding to all the lings and seems comfortable with his ears, then there probably is no reason to adjust them. At six months post activation, I did ask the audi to re-run the NRT to see if the levels had changed and she made minor adjustments based on the results. At this point, we were going the our CI Center ever 6 months, but we live far away...

Be patient and enjoy him!

Kel said...

I'm lucky that my 2 are so close together, so I can sort of remember what my hearing child went through... In fact, that is how I keep myself from worrying when Danny does speed through like some of the other CI kiddos in blogland, because he is progressing at exactly the same speed his older brother did. Someone else mentioned remembering he is really just a 7 month old for language...imagine a true 7 month old saying as much as Aiden does!

As for mapping sessions, we just reached the point where we did not tweak his program at his last session. We'd been doing monthly turn ups the first 6 months, then his a "good spot" his audi said. We'll go back in November and see if they tweak or leave it alone again, but his programs are 2-3 months old at this point.

tammy said...

Kat, thanks so much for your responses! and seriously, don't ever be sorry to post - you are a wealth of information! Were we at the same Jane Madell conference? I need to go check my notes ... but then again, we saw her when we first heard about Aiden's diagnosis (she held him while she talked!) and I didn't take much in. Miss you girl!

Drew's Mom said...

1. Mapping Frequency: Drew now (at two years, four months post implant) sees his audiologist about every four months. The longest we have gone between appointments is about five months. And I can usually really tell when it is time for a mapping, as Drew's speech with change a bit, become unclear, and we'll have a stall in language development. We have NEVER gone in for a mapping to have NO changes made (expcept for the mapping appointment where I was pissed afterward, took him for a second opinion, to confirm my concerns in /o/ and /m/ confusion). I guess my point is, there is always adjustment.

2. Level of Hearing: There is a "dynamic range" for the implant that only allows about 40-60 db of sound to be coded. The all other sounds are put in that range. So, a really soft sound of 5 dbs is raised to 20db, a really loud sound, say 90db is lowered to 60db. But overall, the implant can only code 90db of sound. (I hope I'm not confusing you!). So, if your child can hear at 5db, he can only hear sounds to 95db. Anything louder would have to be picked up by residual hearing. So, you have to be careful how low you make the lowest hearing level. Generally, in my experience, most audiologists are happy at 15db to 20db, becuase then you are in a range where the loudest sounds (at 110db) can be picked up by residual hearing. I WOULD NOT, in any shape or form, be happy with any threshold level higher than 20db. (Again, insert my horrible experience that resulted in changing audis - Drew was at 25-30db at the lowest frequencies).

3. Standstills: Absolutely! I found that if Drew was making progess in gross/fine motor skills, language stalled. So, when he started walking, language stalled. When he started really working on coloring, language stalled. But, I could always tell WHAT he was concentrating on, and that helped ease the language fears.

4. Adding Lings: I hate to answer this, because each kid is different and I don't want to overly concern you. But, you did ask...Drew added the /s/ sound about three months post activation. (See 10/6/07 blog; On 2/1/08 (7+ months activation) I talk about the /s/ and /sh/ sound being a work in progress. So, he said /s/ but wasn't using it.) At six months post activation, the only ling we had not heard him say was /sh/ - see 12/29/07. Sorry, that's a little jumpy, but I'm going through old blog posts looking for dates he completed some of these langauge milestones.

My overall OPINION, and it's just that - and OPINION, is that a Mom's instinct is usually right. If you are concerned, there is no harm in getting a second opinion. And, from a Mom that did just that, I am thankful every single day that I did. We do not need to accept hearing at 25db at any frequency - it can and SHOULD be better. One day with a bad map is one day further behind our kids are. I can't even imagine if I would have let Drew go on after our bad mapping where no adjustments would have been made - oh, it's just awful.

Mom to Toes said...

Tammy... this sucks! I'm sorry you're hitting hurdles.

Are they doing Aiden's booth testing on the same visit as the mapping? We have found that Erin just can't handle booth testing after an hour long mapping session, so we schedule the appointments a week apart. We do mapping one week, then a booth test the following week when she's fresh. If something suspicious pops up during the booth testing, we hook her up for a mapping session to tweak what was missed.

As far as plateaus are concerned, we've experienced what other families have: Erin had plenty of them. It can be very discouraging. Particularly if you have concerns about his mappings.

Erin is currently mapped every 6 months. There are always some changes, but generally they are very minor tweaking. Erin's audi is fantastic at reading the little ones. I can only think of one time where it was apparent her map wasn't working for her, and that was when we saw a different audi. We then pushed to continue being seen by her first audi. She was referring patients so she could spend more time teaching (she's a Case Prof as well). But she is so much more in tune with kids than the other audis in her practice I refused to let her go. A good map is so critical.

If your gut is telling you Aiden's audi is missing something, push for a second opinion. It does sound odd to me that he never has any adjustments made - particularly at his age.

Lucas'Mommy said...

I'm waaay late, but here I am!

I just know that he's going to really take off soon.

Lucas did, right when he hit 7.5-8 months post-activation. Things just somehow clicked.

I would be concerned about the maps and loss in dBs. It's good that you're pursuing that....

I know it's frustrating. I was frustrated for many later months, and then there was a ta-da.

I can feel it brewing............ :)