Problems with ds....hearing related/behavioural.

[pucca]

My ds (3.3) has a moderate hearing loss, which so far they have put down to glue ear, but not sure if there are any underlaying issues regarding the loss of hearing. We haven't got that far yet. He is congested all the time, dribbles still alot, and tends to have his mouth open alot even when sleeping. He is due another hearing test but they have said the audiologist has broken his leg so we may have a long wait on our hands, they do not seem to want to help, i even asked about cancellations, other areas, but this was disregarded. So its the waiting game.

I feel this has been a issue from him being a baby, his speech is poor, and he is seeing a speech therapist for this. He also has behavioural problems, infact has been fully assessed but because his eye contact is good they have now discharged him on this side of things, although i am still not certain. He eats odd things, such as washing powder residue, sand etc. He is quite aggressive, and displays some OCD type behaviour.

He very hyper all of the time, and it is really getting me down, he is not sleeping and i am exhausted .

He is also not doing too good in pre-school, he tends to play alone, and because of the hearing loss and speech problems, he is having difficulties mixing. He starts school in Sept (only just 4) and i just hope things don't get worse. I really need this hearing issue sorting out, i have spoken to the manager of pre-school, and will also have the headteacher involved (she is the SENCO) i am waiting on the health visitor calling me back.

I really cannot afford it, but was wondering if anyone knew how much it is for a private hearing test? also is it likely ds will get any additional help in school?

Has anyone been through similar, it is really getting me down, and my heart aches for my ds, i just feel like i have hit a brick wall at the moment.

Thanks

I think I'd go back to the health visitor/GP with your list of symptoms/concerns and ask if they will refer your son to a paediatrician. My son had chronic glue ear from the age of about 8 months. He had behavioural problems and struggled at school. He needed 6 operations, leading up to 2 major operations and reconstructive surgery when he was 12. He had a hearing aid for a while and now, aged 22,he still has a moderate hearing loss.
However, he didn't have many of the symptoms your son has and it's possible that your son has additional needs which aren't being addressed as everyone is focusing on his hearing loss.

Hello pucca, my DS2 has a moderate to severe hearing loss which is both due to glue ear and to a sensorinueral hearing loss.

You should be under the care of your local ENT department, where they usually run hearing tests with more than one audiologist. I am cross on your behalf that you are being fobbed off in this way. You could also ask for a referral to the specialist teaching service which will have a hearing impairement team who are very experienced in dealing with young children. They also help the intergration with school.

You say he has been assesed but it does sound as though there is quite a lot going on with him, for us a turning point was seeing a community paed. If they are good they will open up many avenues of help and support for him.

Does he have grommets or hearing aids at the moment?

(Sorry message is disjointed, am typing in a hurry)

Hi, I too have a son who has a hearing loss which is a mix of glue and sensual neural. I would suggest you contact the national deaf children's society (check their website for details), they have a free helpline and I am sure will be able to offer advice on how to access a hearing test and may be able to help with other issues too. there is also a chat area on the website where you can talk with other parents of kids with hearing problems.

Thank you all so much for all your help and advice.

I do feel as though i am banging my head against a brick wall at the moment.

What basically happened was, he should have had a hearing test to begin with back in January before anything else, but they mixed up the appointments so he bypassed this until now. He has been seen by a panel, including a paed twice, they have all pretty much said they don't think he has special needs, because his eye contact is good. They are pretty much putting everything down to the hearing loss (ds cannot hear under 50dB).

He hasn't got to the stage of grommets or hearing aids as i am being told this about the audiologist having broken his leg there is going to be a wait. I was also told he couldn't see another audiologist as they "tend not to swap patients, they see their own" as quoted by the lady i spoke to earlier.

Speech therapy are not really doing anything with him, apart from they keep assessing him, they said there is nothing they can do yet.

I have made an appointment with my GP at 4.40pm to see if there is anything he can do to help with it all.

Thanks once again, i really do appreciate it, as i just don't know where to turn.

Hi,
Either things have changed or your local health system is different to mine. My son had grommets put in immediately, before any hearing test was done. I asked my GP to refer my son to ENT and, at the first appointment, the consultant looked in his ears then asked me when he'd had breakfast. She then said she would do the operation as soon as she had finished the clinic. So we were seen at about 10am, my son had his grommets put in at 1pm and we were home by 8pm that evening. He had his first hearing test/audiology 6 weeks later. He was not even 3 years old at the time.

See what the GP says, then contact National Deaf Children's Society as said earlier: www.ndcs.org.uk/

Hope you get some help for you and your son.

I have been in touch with the NDCS and they were brilliant, they are going to get their Audiologist to ring me tomorrow for a chat, and they are also going to pass my details on to a regional family support worker.

Asteroids....Wow! that is brilliant...i only wish my area was the same.

Great news from the NDCS.

I think we were quite lucky and I don't know if things have changed now. It was almost 20 years ago but the ENT department there has always strived for efficiency and a quality service. My son had hearing check ups at least once a year for 17 years and didn't see the same audiologist each time. Seems a bit silly to make you wait just because someone is off sick.

Hope it all goes well with the NDCS.

pucca, sounds like you need to kick up a bit of a fuss! They tried this with us and it seems remarkably common, wait and see, wait and see, wait and see, put your foot down, politely of course, and tell them this is unacceptable. What does it matter who your ds sees, you need some answers so that your ds can get the appropriate treatment. Have you been referred to ENT yet?

Your LA should have a sensory impairment service including a teacher of the deaf, they should help even if it is just glue ear, they can advise your preschool how to make sure your ds is fully involved and give everyone tips on effective communication.

The NDCS is fab, their family officers are usually very clued up to how things work where you live, sometimes that little bit of insider knowledge can make a world of difference.

I have been told it is quite common for deaf children to not sleep well, a lot of dcs find the dark a little scary when you can't see anything, add on to that not being able to hear properly and it really doesn't help. Sometimes a nightlight can do the trick or leaving the landing light on, it's worth experimenting.

Bigcar...No haven't been referred to ENT, is that what happens next? (i am pretty clueless). My health visitor is lovely and has said she will look through ds's notes tomorrow (at a dif clinic) and will ring me back and chase it up.

Just got back from GP and he said there is nothing he can do, apart from speak to HV.

I am not going to let it drop thats for sure, i have waited the 6 weeks, and now i want the ball rolling so to speak.

Thanks once again

I would say the next step is ENT, I am shocked your GP hasn't referred him already. They will probably do another hearing test and decide on grommets/ hearing aids etc.

Also to back up what bigcar said, my DS2 gets very upset when he wakes at night, this is in part due to other difficulties that he has but the lack of hearing on top of the loss of other senses in the dark is frightening for them I think.

Good luck tomorrow.

Slightlycrumpled...After reading your post, i have just phoned my GP, i am lucky to have a lovely receptionist and she said hold on he hasn't got anyone with him i am sure he can have a little chat with you. She come back sounding quite put out to say he said "i have patients! no i can't".

I think she was shocked he wouldn't speak to me, i never knew ENT was the next step, i can't believe they are all making us wait, its ridiculous to me.

Pucca, that's awful behaviour from a GP!

Slightlycrumpled is right, ENT is your next step. I had to tell my GP to refer my son to ENT. I think GPs are very reluctant to refer people to hospital. I don't know why.
Suggest it to you health visitor and see what they say. Then, perhaps try the GP again. You may need to be very persistent and keep going back to the GP until they do something. Is there another GP at the same surgery? It might be worth trying someone else.

Asteroids...No unfortunately no other GP. I will get onto the HV tomorrow though definetly. God why is it so hard to get help for your kids?? it is so frustrating. It isn't like i am doing this for fun.

Thankyou all so much for all your help, and for keeping on coming back to the thread.

I am really cross on your behalf! Hopefully the hv will be able to refer, or maybe your speech therapist could drop a line to the gp about a referal.

You could pay privately to see an ENT consultant, but really you shouldn't have to!

as slightly said, definitely an ENT referral, at a loss as to why gp didn't do it for you. ENT deal with glue ear, will check hearing if necessary and then offer grommets/hearing aids, whatever you want to do. Has your ds had his tymps done to confirm that it is glue ear that he has? Have a look here for a bit more info, click on glue ear (2008) part way down, very good info there. Just see what the hv and NDCS audiologist have to say tomorrow, but a good trawl through the NDCS site will arm you with enough info to have some idea of what everything means.

Bigcar...What is tymps? i haven't got a clue what that is is it the machine they put in the ear? he had that done, with the graph.

yes, that's the one. Normally as soon as you get a flat line on that someone starts talking grommets pretty quickly especially if there is a reasonable hearing loss to go with it. A lot of places will want to wait and see if it goes on it's own but that's usually a decision taken by ENT not audiology and then of course as a parent you can argue against that if you choose.

If you have a look here part way down is an audiogram graph that shows at what db most speech sounds are at iyswim. A 50db loss means that your ds will be missing a lot of speech sounds, especially the softer ones like th, f, s etc which is probably why speech therapy isn't much use at the moment.

Bigcar...ah i see, there was 2 doctors, one i gather was a junior. They did that test with the graph but i didn't see anything, but the senior doctor said "have a look this is a very good example of glue ear". As he looked inside his ear too.

His speech is missing lots of sounds, almost every word ds says has at least one sound missing. He missing the end sounds too e.g bed with the "d" on the end.

Another thing is he doesn't talk in sentences. He misses the link words, so instead of saying i want to go the shop, he will say go shop. Recently he has started stammering too. He also freaks out sometimes at very loud noises.

Slightlycrumpled....You definetly hit the nail on the head with the sleeping problems, as for the first time, ds woke up and put his light on! he won't allow you to turn his light off when you put him to bed, but i always do later on. When i asked him why he wakes up he says its the dark.

I meant without the d on the end. Brain not functioning properly yet

Oh I really hope you see a more helpful doctor soon pucca. DS2 had his grommets fitted quite quickly after the diagnosis of glue ear when he was just 3. Sadly for him they weren't the cure as we later found out he has lots of other problems but he is due to have another lot inserted just after Christmas. He also wears hearing aids.

Some ENT doctors will also prescribe a three month course of antibiotics to drain the ear instead of surgery. I was always a little confused by this as out of all the surgeries my son has had to have grommets is by far and away the most straightforward.

We have a little nightlight in his bedroom, which just gives of a very gentle glow. If he does wake he is much happier to go back to sleep now.

Good luck with your hv.

great bedside manner there then so he explained to the junior doctor but not to you?! Don't be afraid to ask to see things or have things explained, it's something they should do anyway. His speech isn't really going to improve much without dealing with the hearing loss, whether that's with grommets or hearing aids. Loud noises can be really scary when the rest of the world is muffled and suddenly something comes through clearly, although of course that doesn't apply when the child is making the really loud noise

No bigcar it certainly doesn't apply when ds is making the noise haha, he is always shouting and banging around..drives me mad

I know re the doctor! i could kick myself now for not asking properly, but i was in total shock! i thought it was something else being totally honest didn't for one minute think it was anything to do with his hearing, and now feel really stupid for not realising.

Just spoke to lovely audiologist @ NDCS, who said from what i told her ds has had this for a long time, she also confirmed that GP can refer straight to ENT, that there is no point waiting around.

I phoned GP back just now, and he said it isn't as simple as that, let me speak to the H.V first

It's not your fault pucca! You have every right to expect that the right things will just happen. Sadly as you are discovering they don't always. Don't beat yourself up, you are doing all the right things.

Your gp wants shooting btw.

Slightlycrumpled...I will definetly try the nightlight thing, very good idea.

My H.V has been brilliant so far so i am sure she will help

pucca, of course you're not stupid! We hadn't realised dd3 was deaf, it's not uncommon, especially for those of us with dcs born before newborn screening was introduced. I don't really get your gps attitude at least the NDCS came up trumps, hopefully your hv will too, sort that daft doctor out for you