Grommets: not the result we expected

[Arabica]

DD (2 in July) has global developmental delay with no diagnosis, and her speech/language development is probably the most delayed thing about her. When we discovered she had glue ear and a combination of sensorineural and conductive hearing loss (threshold around 50db, both ears) we hoped (and were led to believe) that grommets might make a big difference, but there has been no change in her ability to communicate.
I still haven't had proper follow-up but her permanent hearing loss is probaly only around 30-40db which the consultant told me briefly by phone, wouldn't account for her total lack of speech, babbling, pointing or even copying of makaton signs--save for the very occasional 'hello' or 'goodbye'.
I don't think there's any concern that DD is on the autistic spectrum.
Just wondering if anyone else's child had a similar sort of speech/language delay at her age and how it's been tackled? She has SALT support but we're waiting to see audiological consultant on 25/6 before our next appt with SALT.

i have no words of wisdom - sorry.

However, Im almost in the same situation...

DS5 is just 2, has GDD too (ability of 12mth) (no DX) and his speech/communication is that of a 6mth old. We have not had a hearing test done tho. SALT says to be on his level (ie only talk about what hes doing) and 'model' (ie keyword only repeatedly). BUT he used to point and even do about 3/4 makaton signs and say maybe 2/3 words - but nothing now (no babble ever, no pointing now, no words, no signs, nada - but a gorgeous smile!) we have just been referred to CDC.

Why do you say that you are not concerned about autism? i was just wondering why it was that you were fairly sure that it wasnt that Do the professionals think its something -but havent tested for it yet? is there a suggestion at all at the route of your DD's problems? Am I right in believing that even babies who are totally deaf babble until about 6mths where they stop again? Sorry to ask so many questions, and i must sound really rude Im sorry if it comes across like that.

forgot to ask, does she understand what you are saying to her? perhaps if she doesnt understand thats why shes not talking? Our salt says that understanding is the first step before communication. im sorry i dont have any answers for you - just more questions

Hi arabica. This sounds exactly like DS2! Grommets and hearing aids have not really improved his speech to the degree we had hoped. Eight months ago we were referred to a Cleft lip and palate consultant, as he would drink through a straw and some would come through his nose. We got a diagnosis only on Monday which showed that his soft palate does not meet the back of his throat, therefore not enabling him to make sounds correctly and in most cases not at all.

We are now awaiting confirmation of what operation would be appropiate as his confusing medical background makes him high risk for more surgery.

Keep asking the questions of the medics - you are doing a great job for your DD!!

p.s kerrymum is also right that her speech may also be down to her young age!

We were also told this but I just 'felt' there was more to it. Good luck!

cazcaz: arabica mentions that her DD is non-verbal. I think that at 2 she should have some speech, even if its just odd words, or even babble - obviously im no professional, but lack of gesture too is a bit of a worry.

misscutandstick, why has your DS not had a hearing test? They are routine in babies these days. DD is 5 and we had one, and not just that crap of a HV clapping her hands behind her or jingling some bells, proper equipment. It worried me at the time as it was in a local health centre that we do not use and there seemed to be no provision for dealing with worried parent or child with potential problem on the day, I assume you would just be left to wait for a letter or something.

Sorry the lack of gesturing went over my head!

Yes whilst our little boy at this age had NO intelligable speech he was gesturing and starting makaton signing.

However he did not make any noise really at all untill he had speech therapy on a regular basis and he now doesn't stop making 'noisy speech'. Of course this may also be due to his hearing being sort of corrected.

Aarabica I do feel for you it is extremely worrying, and I think I remember from your previous postings that your DD has other difficulties.

Hi Arabica. Dd3 was in a very similar position back in October when she had her grommets done. We were hoping that the combination of grommets and hearing aids would do wonders for her communication, unfortunately it hasn't. She has made improvements but I would have to say that that didn't happen really until she turned 2 in March, she has since learned to point, wave and has learnt a few basic signs (her favourite being chocolate!) as well as varying her babble (she has one word at the moment). It is coming, slowly, but definitely making improvements. Dd3 has a teacher of the deaf that we see every week, she keeps telling me that sound has to go in for a long time before you get anything back. Nt babies have sound going in for about a year before they get their first words, your dd hasn't had that so will need to catch up. Apparently it takes some children a lot longer than others to start speaking, but in the long run, they end up the same. Dd3s ToD says that learning to listen is really important and I have noticed that she really concentrates when shes spoken to, so shes definitely taking it all in. She has also learnt recently to follow very basic instructions, like get your bottle, get your shoe (so long as she can see them).

Ask your audiologist to refer your dd to the teacher of the deaf, I think most areas have them and ours has been absolutely fab. Try to get as much salt input as you can whether that is from a ToD or a salt. Also get on to the ndcs, the site has an awful lot of info and their parent place is good too. They also have a very good helpline as well as running weekends for newly diagnosed families, some of which are for children with additional needs.

I hope that's some help, dd3 is making improvements now, but it has taken a lot longer than I thought it would to get going.

That's very interesting, bigcar, about the year of input before NT babies respond to speech. Except, she was wearing hearing aids for about four months before the grommets were fitted, so she would've been hearing some speech then.
We do have a teacher of the deaf but I think she was expecting us to go away after the grommets were fitted. We also have a SALT but as I said in my OP, she's waiting to hear what the audiological consultant has to say.
cazcaz & kerrymum, no, she doesn't really respond when I talk to her, even thought I reinforce as much as possible with Makaton at the same time--I can't ask her to fetch a book and expect her to get it, for example. Despite this we try and do as much makaton as possible and I think she might understand 'more' and 'drink' (very useful in later life!)
Miss C&S, DD has never had any babble; she makes some sounds, but not the pre-speech sounds like dadada or aba, aboo, that DS made. She also doesn't have special sounds for people or situations. She does, however, have an interest in people, makes eye contact, copies her brother when he's rolling around the floor or bouncing on the bed, and smiles a lot.

DAVROS: the paed asked me if im concerned at DS's hearing, i explained that he clearly does hear some very quiet noises (door creaking, keys jangling, stairs creaking) and so i said that i didnt think that it was a problem. Although sometimes pans can clatter above his head and he doesnt even flinch! So he didnt organise one. But DS has been referred to CDC so i WILL request one anyway, just to rule anything out. Thanks for asking

Cazcaz: im sorry after re-reading my post it sounded like i was verbally slapping you im so sorry, many apologies.

Arabica: {hugs} Firstly Apologies: I suffer terribly from 'foot-in-the-mouth disease' and tend to go blundering in when a softly softly approach would be much more acceptable. Its strange that you say "She does, however, have an interest in people, makes eye contact...and smiles a lot. My DS is the same, although his eye contact is not brill (maybe up to about 2/3secs at the most). And hes such a happy little chap. Its strange because you say that your DD cant be on the spectrum BECAUSE of this, and yet I am convinced that DS IS on the spectrum in spite of this. I was just a bit concerned that she will copy the actions of her brothers, but not the action of communication (signing, pointing, etc)

However, that said, you know your daughter and im sure you're right - usually a mum knows these things way before a professional does even with all their tests and equipment.

miscut - thats okay. I should have read the OP more carefully!

arabica - I hope the audiology consultant can shed some light for you, and that you don't have to wait too long for the appointment. It may be that her hearing has deteriorated and that her aids need re-setting.

It may be worth checking with your pead about whether or not anyone has looked properly in her mouth for the muscles that help speech. Our DS had his tonsills out, doctors were (and still are) always looking in his mouth and nobody had spotted it. He also made no babble sounds and was a constant drooler.

Good speech therapy on a regular frequent basis should help even the most severe of cases. It's getting it that can be the problem!

Yes, I think she's been checked pretty thoroughly to see if there were any problems with the muscles that are used for speech. She does have hypotonia and has had feeding problems from day one, so there's been quite a bit of attention paid.
I did ask DD's developmental paediatrician about AS at our last appointment but she isn't concerned. DD doesn't appear to have any problems with sensory issues either, doesn't mind crowded places or noise or textures of food/objects. And she is very communicative in her own way. Just not by using her voice.

Hi Arabica, whenever I read your posts about your DD I'm struck by how similar to DS2 she sounds.

He also has hypotonia and also had feeding problems, in fact it is only in the last six months we have got the eating sorted! He will be 5 in Ocotber.

I also felt that often he just did not have the energy, he was very ill and underweight, almost silent BUT he also made great eye contact, big smiles, lovely cuddles etc.

In September we finally got to see the right speech therapist for his kind of difficulty, (pre - diagnosis) and she has done wonders regarding the hypotonia around his mouth, he even looks slightly different. I guess what I am trying to say that even with these difficulties children can make improvements.

Hi Arabica. Dd3 has been seeing our teacher of the deaf since last June and has been aided since September, as it turned out her grommets didn't make a blind bit of difference to her hearing (both have already fallen out), it really has taken her a long time to get going with her sounds and signing. Her hearing aids were originally set very conservatively and she wasn't quite getting enough sound, as she has had more hearing tests they have been able to tweak the settings and it has made a difference for her. Are you still using aids? If not your dd could still be missing some of the more subtle speech sounds. Our ToD lent us a sound meter for a week which was really good, we could hear for ourselves exactly what the loss she had meant, as well as having a who could shout the loudest competition. I was seriously disappointed when I didn't win not sure the neighbours were impressed!

Hopefully the next time you're at audiology they will be a little more supportive.

I just wanted to say thank you all for this thread. It's the first time I've felt that someone has a child similar to DD1 (GDD, no DX).
It's helped me realise we're not the only ones out there .

Also DD1 is waiting for grommits/adenoidectomy and fingers crossed, we're hoping it will help hearing and inturn her speech .

Hi cktwo! There are a few of us around with children with GDD and no dx. How old is yours?
bigcar, it's interesting what you say about the hearing aids not being set correctly. What kind of hearing loss are you dealing with? I think DD's might be mixed, ie some sensorineural but also some permanent conductive deafness too.
DD's bone conductor hearing aids seemed to make no difference whatsoever, pre-grommets. As she hasn't been seen by anyone after the operation, she hasn't been wearing them since.
Now we are sure she can hear much better--DD will turn her head for subtle noises like my phone bleeping when I get a text message, or someone coming upstairs, or music on the radio/TV when the sound is fairly low. She never did this with the hearing aids on.
cazcaz, glad to hear your DS is getting good support, I think I will too, but it's all been delayed by the follow-up audiology appt taking so long. We have ENT follow-up this week so we can discover if the grommets are still in there (I assume that's what they do!)

Dd3s loss is mainly sensorineural (profound left, moderate right) but she also suffers with glue that seems to fluctuate. I don't know much about permanent conductive deafness but it sounds as if removing the glue as made a big difference, maybe you could ask about changing to a behind the ear digital aid to see if that would help. Our audiology department seem to work on the principle of, if you don't ask, you don't get, they weren't originally going to aid dd3 at all (!!!!!) of course the audiologist usually knows best but children are all different and what suits one doesn't necessarily suit another. I usually ask if we could just try abc till the next appointment, they've been pretty good so far. In my rather limited experience it's all a bit trial and error at this sort of age, how they tell sometimes whether dd3 has responded to a sound or not is totally beyond me! I think normally when they get to around 3 the testing starts to get a bit more accurate and therefore setting the aids is more accurate (they can adjust volume at different frequencies), each time we go they adjust the setting on her aids slightly and each time there seems to be a change in the sounds she makes.

Like I've said before it's a slow process but we are getting there. Especially when hearing isn't the only problem, dd3 seems to have so much going on sometimes I wonder how she takes anything in. Thankfully she is a happy little girl, well most of the time anyway, it's just me that is slowly turning into a nervous wreck

My DD1 is 3.5 and we've just found out they will not be operating until September/October but I shouldn't complain too much cos we insisted she was seen at Manchester rather than our local hospital.

Nervous wreckage here too bigcar I think when there's lots going on, you have to rank the different issues in order of priority, ie we didn't worry too much about the hearing side of things when she wasn't eating and had a succession of nasty viruses. Now she is staying healthier (hopefully) and she is eating well, we can devote a bit more energy to her hearing and speech.

My DS2 has grommets, and he had a hearing test yesterday. Results were inconclusive. They measured him up for an aid in November, but we were able to get grommets done really quickly and the results from the ABR done at that point showed he had "normal" hearing.

His responses to sounds are varied, and while he is making more sounds he has no words (at almost 19 months).

He was a bit poorly yesterday, so they want to see him again in about 6 weeks. They want to do another distraction test I think. They seem so unscientific to me. I asked about another ABR, and they said they probably wouldn't do another one.

In the meantime, his speech (or lack thereof) is getting further behind and we don't really know eactly what is going on with his hearing!

(He really put one over us - he was so miserable at the drs, but as soon as he got home he was happy as larry, playing with his toys, and laughing at me!)

Hi mm22bys. I know what you mean about the distraction tests, how they work it out is beyond me! Last time we went dd3 wasn't really in the mood at all, still not sure how they figured out if she was reacting or not. The problem with the abr is that most places have equipment that tests at one frequency at each db level. So hearing could be normal at one frequency at a certain db but not at a higher/lower frequency at the same db, iyswim, so although it is a scientific test, it's not necessarily 100% accurate. The distraction test, or even the scary puppet things can be used to test at different frequencies, so although much more dependent on the skills of those carrying them out can be more accurate. Hopefully next time your ds2 will decide he wants to play along, typical isn't it

Arabica, we are still trying to crack dd3s eating, she's finally off the high calorie prescription milk but lumps are still a bit of an issue. It's on the list though, we're definitely getting there too!

We've had so many distraction testes done and whilst DD1 didn't really fail she was borderline so they kept telling her to come back in a few months.
Nothing ever happens so we asked are GP to refer us to Manchester as there was a ENT consultant we had heard on Radio 4 and thought he might be able to help. We felt DD1's hearing was getting worse and as a result so was her speech. So we've binned the local hospital and after one appointment with Manchester she's now lined up for her op later this year.
Anyway the moral of this story is you've got to fight for everything you can get, and if you think the doctors arn't interested in your DD/DS, do some research and go elsewhere.

Have finally had a follow-up appt at Gr Ormond St. After waiting 2hrs they did a tympanometry test and got a flat line. Dr had a look and discovered DD's grommets are blocked--apparently (and excuse the yuck factor) it looked like 'old fluid and dried blood'. If the antibiotic eardrops they've given us shift the blockage and ther is still a problem, then she has permanent conductive deafness probably caused by malformation of the little bones in the eardrum. Which they don't operate on until children are older.

Now we have had a much more positive update from our usual audiology team in Hackney, who've found normal inner-ear hearing and just a mild, 35-40db hearing loss in the middle ear, consistent with the grommets being a bit gunked up--but they say no infection, just a bit of wax which should clear up all by itself. Back in 2 months for a re-test. No hearing aids needed at the moment!!
She still can't/won't speak, though!

At last some good news thats good to hear!