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Glue Ear, Lack of Speech, Argument with Audiologist...What to do?

(19 Posts)
BlueberryPancake Thu 01-Oct-09 13:52:58

DS2 (2 years 5 months) had his second hearing test yesterday as he doesn't speak yet. At his first test (6 months ago) they told me that he had glue ear, but mild case, with 'no significant hearing loss'. However, a second test yesterday shows that he still has glue ear in one ear and the other ear has liquid in the tube between the ear and the nose but the ear drum is 'clear'. Again the conclusion is that there is 'no significant hearing loss'.

Now, I know I should trust my instincts, and I think that there is a hearing loss, things he should hear and he doesn't. He is nearly two and a half and only says four words (with a few words only said a few times).

We were refused a full peadiatric assessment twice because he everything else is OK with his general development.

We have seen NHS speech therapist but they don't do much becore child is three. He has a little group session once a week, but it is RUBBISH. really honestly rubbish.

Now, he had a major tantrum at both hearing tests. He is scared of the noises, the machines, so they can't do the 'subjective' test to see if he can hear a specific sound wave or not. So the test is done with a little probe in the ear.

I don't know what to do next. I had a 'argument' with the Audiologist who told me again that my son's lack of speech isn't due to loss of hearing, which I find really quite difficult to understand. How can a child learn to talk if he can't hear all the sounds properly?

I asked for a second opinion but I don't know if I can get another test. I really need to know what to do next, and what options are available. I just want to do everything that I can for my son to be able to express himself, he gets so frustrated with not being able to speak.

Any similar experiences? How did you manage to get an intervention? Why am I getting no acknowledgment that a loss of hearing - even though small - can cause speech delay and how can I get the appropriate support? Maybe a hearing aid? I was told that gromets were not recommended at this stage. But what else?

belgo Thu 01-Oct-09 13:57:30

My dd1 was almost four, and not talking very well when we realised she had hearing loss, and she was diagnosed with glue ear. She had grommets inserted and her speech improved very quickly.

She was older when she had the hearing test then your son, and so it was probably more accurate.

My dd1 was also prescribed nose drops to try and clear the area in her ear - it didn't help but has that been discussed with you?

BlueberryPancake Thu 01-Oct-09 14:03:29

He had nose drops during the spring. I think that it helped a bit, but it clearly hasn't solved the problem.

DS cried all the way during the test (the test with the sound waves and hand held machine, or anything asking him to react to a sound.) he did that the first time around, and again this week.

Grommets are not at all recommended at this stage, because it's not severe enough apparently. And there are some risks, especially as he is so young.

hatchypom Thu 01-Oct-09 15:01:44

I'd ask for a second opinion / different audiologist. The glue ear may be separate to an underlying hearing problem. Little ones are usually tested in a sound booth with a speaker in the corner when they hear a sound from the speaker they turn to it and get "rewarded" with a dancing flower or something similar.

trust your instincts, have you thought about a private assessment or therapy ?

Try googling the Ling sounds - these are 6 sounds that cover the whole of the speech spectrum and should give you an idea whether or not he can hear speech. you could do this at home with him dropping a penny in a pot every time he hears it (you sit behind him)

BlueberryPancake Thu 01-Oct-09 15:33:57

Yes we thought about private SALT but it's very expensive, we can't afford it right now. We didn't consider private assessment, I'll check how much we could have it for. But I have just called a NHS special unit in London that has private and NHS hearing checks for children, and they say that I can get an appointment there if I have a GP letter raising serious concerns. I might do that I think.

BlueberryPancake Thu 01-Oct-09 15:39:26

Oh yes, it was a test when he'd hear a sound (a scary wavy sound) and move his head there were puppets in a corner that would start moving. But he was terrified of the puppets. The Audiologist had a big beard and he is scared of man with facial hair! It's a test based on conditioning and DS didn't respond to that well. He was scared of the movement, and scared of the hand held noise machine with lights on it, he was scared of the audiologist!!!

hatchypom Thu 01-Oct-09 16:09:51

sounds horrible.... I've sat through 20 sets of the same and its never been scary. That sort of test is used with toddlers, if you think he's up to it the pennies in a jar is the next stage up ! Try it at home to get used to it. Men with beards can often be scary - note to dh

CarGirl Thu 01-Oct-09 16:14:44

My dd passed 2 NHS hearing tests but had very poor speech (and was very late starting). I was taking my older daughter for some private INPP treatment and the guy offered to do my youngest one a hearing test for free (he is a qualified johansen sound therapist too).

Well angry her hearing was awful it was very poor in the highest 40% of the frequencies but because it fell just within the 40 decibels she had been discharged by the NHS ones. She can now hear really well after using Johansen sound therapy plus she had one lot of speech therapy when she was 3.5.

In short I'd pay for a private hearing test and ask to see the results I am still fuming that they missed such a huge problem - clearly she wouldn't play the audiologists game properly because she couldn't hear very well not because she was being contrary (as they claimed at the time)

CarGirl Thu 01-Oct-09 16:17:34

One of my older dds too had poor speech etc and she had glue ear, it took her to have 2 failed hearing tests within 6 months before she got grommits (after 3 years of tests) by that time she was almost 5, hardly spoke at school etc etc. She was like a different child within 6 weeks of her grommits being done.

Glue ear has a huge affect on them because whilst they can't hear properly the brain forgets how to hear, then when it can hear the brain relearns how to hear and it can be long cycle of first the ears not working and then the brain having to relearn what to do IYSWIM.

CaptainUnderpants Thu 01-Oct-09 16:38:25

I paid for a private hearing test for my DS when he was 3.5 yrs, he had been having SALT but was n't progressing. Thw waiting list for hearing test on NHS was at least 3 months.

Got the hearing test - glue ear.

Went to GP got a referral privately for ENT consultant. Again by passed the NHS by 3 months . The cnsulatnt then put us on his NHS list fro grommets and have been seeing him on NHS ever since.

I suggest that you pay for private hearing test , get the results , go and see you GP get a referral letetr to see ENT privately to get ball rolling.

We do not have private helath insurance but a very good GP who wrote a fab referal. Our is a summer baby and was starting school in about 5 months when we had the referal.

It cosy us £30 for heraing test and £165 so see consultant privatetly.

HTH

used2bthin Thu 01-Oct-09 23:06:31

Hi blueberry pancake we spoke on my thread about my DDs glue ear. I've had a very similar situation with the audiologist insisting that DDs hearing loss isn't enough to have caused her s and l delay. Then the SALT refusing to see her as there wasn't much she felt she could do if DD can't hear clearly! It is so frustrating.

DD was also scared of the stupid puppet things so just watched them the whole time. Have you seen ENT or just audiology? I am not sure why but we've only been seen by audiology. I am waiting for the inevitable ear infection (with winter colds) and asking the GP to refer us back to audiology again.

BlueberryPancake Fri 02-Oct-09 10:20:07

We saw ENT twice, but both times we were told that the liquid was 'clear' liquid, that it wasn't very thick, that there was no puss or infection, and that there was some vibration of the ear drum 'within the normal range' but it was still much lower then a normal ear.

I just don't understand why someone wouldn't want to confirm that there might be a correlation between the fact that he has glue ear and the fact that he doesn't speak. He doesn't even imitate speech.

I have made a few calls and I am getting somewhere with getting a second opinion...

used2bthin Fri 02-Oct-09 20:26:33

Who are you going for a second opinion with if you don't mind me asking?

The speech thing is absolutely infuriatng I know. I spoke to someone at the national society for deaf children who was saying how huge an impact on speech glue ear can have. I mean, my DD had it all last winter and possibly the one before, at exactly the age where she would have been learning different sounds. I am a bit ranty about this but it is something that is just so frustrating I really really understand what you mean.

A year ago my DD had one phrase/sound that she used for everything, she has only recently begun to imitate again and I am guessing that it is because she has got one ear free of glue ear-one ear is better than none. It has made a big difference to how I feel about it as well as her speech, it can be so disheartening when they don't repeat.

MavisEnderby Fri 02-Oct-09 20:32:06

I would insist on a second opinion and nag your GP for a referral to a developmental or community paediatrician,it could be an issue with hearing if you say he has some abnormal range but a second opinion could help eliminate any other issues.I am sad as it feels to me that you have some doubts about other issues than hearing,and having had a fabulous,supportive and wonderful service from nhs with regards to own child who has hearing and sn issues it is sad that you feel no one is taking your concerns seriously.Have you other worries?Have you tried posting on sn for any advice?

MavisEnderby Fri 02-Oct-09 20:38:41

Also in the meantime could you try signing classes with your dc.It is a very good way to supplement speech and allow and outlet for communication.

goingtohaveagoodnightssleep Fri 02-Oct-09 20:44:18

I would also ask for a second opinion.

My dd2 was a late talker but not so late it was a worry. She failed her hearing test three times with the hv but I did not follow it up as she started talking so I assumed she was okay. Over the past year her hearing had got really bad, she is 5, so the gp refered her to an audiologist. SHe was borderline after her first test and then six months later, which was this august, she really had very poor hearing. I used our private healthcare to see an ENT specialist but her hearing suddenly got better a few days before we saw him. He did his won test and even though I tohught she could hear well he said she had a bad enough hearing loss to warrent grommets. SHe had them inserted the next day. I have really noticed an improvement, her pronounciation is so much betterand she is asking how to say words. I really wish I had taken more notice sooner as she is behind in her school work and I could have prevented it.

I hope you get it sorted soon.

BlueberryPancake Fri 02-Oct-09 22:05:40

As for second opinion, I called a London hospital that has a children's audiology unit and they said that if I have a good letter from my GP I could go there, not private but on NHS, as in my borough the only audiologist is the one I saw, and I am entitled to a second opinion. In the meantime, I have booked a provisional appointment with a private clinic in London. It's over 160 pounds so I would obviously prefer not having to go there.

DS signs, he knows about 30 signs now and he has started making up his own! He has 'invented' a sign for bowl of cereals! He now uses signs 'instinctively' as he signs to me to show me something. If he hears a helicopter, for example, or sees a butterfly or cat, he will sign it to 'share' it with me. I know that he badly wants to communicate!

I had another telephone conversation with the Audiologist, who is now very cross with me, and he said to me clearly and without doubt that he believes DS has never had a significant hearing loss and that his lack of speech isn't due to a hearing loss.(even though he had/has glue ear!!!)

used2bthin Fri 02-Oct-09 22:16:53

Ah I think you are doing the right thing to get a second opinion-that audiologist sounds a bit like ours, she seemed to have decided before we entered the room that DDs issues were not down to hearing problems.

Apparently if a child has glue ear sounds are muffled, so how can they hear words clearly to learn them as other children can?!

Well done on the signing, I have been burying my head in the sand and had let the makaton tail off but am starting to pick it up again now.

Btw DDs SALT said to me that "absolutely glue ear can affect a childs speech, sometimes it doesn't, and sometimes it can hhave a huge impact"(conversation etched onto my brain...)

hatchypom Fri 16-Oct-09 16:38:45

Hi blueberry any news ...

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