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

Well H.V has been wonderful, she has sorted out an appointment for ds on the 2nd Dec with audiology, as we haven't had the report from the last appointment yet and GP cannot refer to ENT until this report is through.

I have also been today and spoken to the headteacher about it all as she is the SENCO, and she has been brilliant too, she is going to fill some forms and apply to get ds additional help in pre-school and school once he starts in Sept.

Don't want to scare you, but has anyone offered you an EEG? Our son had EXACTLY the same problems - poor speech, deteriorating behaviour and sleep, didn't seem to hear us a lot of the time - we wasted 2 years on hearing tests and speech therapy, considering grommets etc. He began an odd lip twitch/eyelid blinking thing which we were told was a nervous tic because we were putting too much pressure on him to speak more (!), and quite by chance a nurse saw it and said that looks like a seizure.

Oh no, we said, he can't possibly have epilepsy, he's never had a seizure. But an EEG showed he was having constant absences, particularly during speech, which was affecting his learning and functioning. He was diagnosed with Landau Kleffner syndrome (often misdiagnosed as autism as seizures aren't apparent) so maybe check it out for peace of mind?

If we hadn't wasted so much time less damage would have been done - with speedy diagnosis and treatment the damage can be reversed for many kids; sadly not ours.

MeganH....It is very funny you saying that as from a baby (first one at about 8/9 mth)ds has had episodes of his lips going blue, infact it happened this morning! his top lip went totally blue. It hasn't happened for a few months prior to this morning.

I did go to the GP about it when it first happened (well i was told to go back if it happened again so really it was the 2nd or 3rd time) and they sent him for an appointment at the hospital. They didn't really do much, just had a quick listen to his heart and i was told he was fine.

He did go through a phase recently of over-exaggerated blinking for a while, and i thought his eyesight had deteriorated - it hadn't.

Also he has a lip/chin tremble type tic, but that is a thing on his dads side i think as he has it and my dd has it too. People have commented on it though.

Well, an EEG could clarify things, and it isn't invasive, just a bit of a fiddle. We had a quick one initially, about 10 min and the burst of seizure activity were revealed, even when he wasn't blinking or anything. Then we had a sleep-deprived nap EEG, and the minute he fell asleep the spike activity on the EEG was constant, even though he looked as peaceful as anything.

I really wish I'd known about subclinical seizure activity years ago; it would have saved us so much heartache, not to mention my son would not have lost all his speech. None of the many docs who we took him to even thought of it.

I hope you get some answers soon!

I am starting to feel so upset about everything that is going on with ds. I do still feel there is something more going on with him than just the hearing and i am sat here in tears thinking about it all, i am just so worn out.

He is just so much hard work and i am completely ground down with his behaviour. He hardly sleeps, i have a nightmare almost every night trying to get him asleep, only for him to wake up until eventually he comes in my bed where he kicks me all night.

He is constantly defiant, running around, totally hyper, turning taps on, ripping up his sisters pictures or breaking her things, biting, hitting if he doesn't get what he wants. He today just stood there and wee'd on the floor 4 times. He licks everything, he plays with his poo, putting his hands in it, and although he hasn't done it for a while, he was smearing too.

He NEVER rests, or sits quietly, and i am really struggling with him. This morning he opened the door and let the dog run off, and smiled when i told him he shouldn't have done it. This is what he is like all the time, i am losing control totally. He climbs all over the furniture constantly and throws everything everywhere. I just don't know how to deal with it all. I love him to bits of course, but he is so much hard work right now.

bump for any advice, you have all been wonderful

pucca sending you some unmn like hugs If you think that there is something other than a hearing loss going on with your ds then I think you need a referral back to a developmental paed. You know your child better than anyone, so don't be fobbed off. Reading your earlier post when they said your ds was fine because he had good eye contact sounds a bit dubious to me. Were they looking at any diagnosis or at autism in particular? Not all children with autism have poor eye contact, it can be a bit of a red herring. My dd3 has quite significant sn but makes very good eye contact despite being able to see very little so I'm not sure why any paed would rule out sn on the basis of eye contact.

His behaviour could just be down to frustration at not being able to hear properly, it's impossible to say which is why you need this sorting asap and the waiting is just so frustrating when you just want what is best for your ds. It is so very tiring keeping on trying to sort things out but unfortunately that seems to be the way the system works, she who shouts loudest gets

Bc thanks so much, no one else really understands so i guess i am using MN as my outlet at the moment. My parents just say oh he is a typical boy, and think by me having him investigated for things in the past i am placing a un-needed "label" on him.

That was the only reason they gave as to why he couldn't possibly have a behaviour problem or issue also because he didn't hide in the corner he did try to interact. This was back in June and he has changed even since then. For example i took him to speech therapy 2 weeks ago and he crawled under my chair, he did eventually come out but then would only whisper very quietly and found it a struggle to be in the room with the speech therapist he wouldn't look at her or anything.

I have his parent conferencing next week, and the paed said for pre-school to review him in Jan, so i am going to have a good talk with the pre-school manager and ask her to be totally honest with how he behaves, although i know he has had some aggression issues, and every assembly he has been in (just a little one, KS1 only) he has ended up being pulled from the floor and seated with a teacher or placed on a chair in the corner. Dd who is in Y1 has told me this.

I also plan to really get some answers at his next audiology appointment on the 2nd Dec, and ask if all this can be put down to the hearing problem.

Thanks bc for your help.

Forget to mention, aspergers and autism were mentioned initially, but ruled out because of the reasons i said.

Also thankyou for the un-mn hug hahaha

If you are worried about asd I would start a separate post with asd in the title and see what some of the more knowledgeable ladies have to say Although I really don't see how they could rule asd either in or out after such a short time and so few meetings.

I can say with some certainty though that if he is not hearing properly, there is little hope of him behaving in assembly. He won't be getting anyones speaking through clearly, he won't understand what's going on, so it will be incredibly boring and dull, why would he sit still? You can always count on siblings to grass a brother/sister up can't you When you go back to audiology ask about the possibility of hearing aids until the ent referral gets done, might help you see how much behaviour is down to hearing loss, it won't give him perfect hearing but is worth considering.

From other threads I've read here, it's seems pretty common for grandparents to not accept there is something wrong with their grandchildren, just trust your instincts about your child Maybe write a diary of things that happen that cause you concern then at least you can go back and give specific examples of what's going on.

Hi pucca, so sorry you have been feeling so upset. I can remember well the late night sobbing, convinced there was something more seriously wrong with my son. There was, but you know when the worst happened it was better than the constant wondering and having my instincts down trodden by very well meaning family and friends.

Bigcar is right about assembly, even though DS2 wears hearing aids he really struggled in assembly until they got a little microphone to go directly to his aids, the background noise and general acoustics in school halls are terrible.

If his speech is poor he will be very fustrated at not being able to communicate his wants and needs clearly.

I hope you are feeling better tonight and that you get some answers soon.

pucca I can really sympathise as my DD has glue ear and other health issues.DD is also 3.3.ch and language delay and I can't seem to get anyone to actually do very much because the glue ear means that the SALT is saying it is the reason her speech is so delayed and incoherant. Meanwhile the audiologist seemed to think taht their was more to it all than the glue ear so isn't doing anything about it.

I went back to my GP who is very good and she has now emailed the audiologist to see what needs to be done. It sounds like your HVis good too so I am glad you have her onside. Also the GP has got me putting olive oil drops in DD's ears as she had a lot of wax. Not sure if it does much but I feel Iam doing something at least while I wait.

Like you we have not been referred to ENT and the GP said she will if it comes to it but seems to want to moniter her and try other stuff if possible first.

We do a bit of makaton to help with the speech and language because she really has very few words which are clear enough to understand but with signs I can work it out more.

I spoke to NDCS who were great and the other one worth a call is AFAISIC to talk about any concerns you have about speech and language. Good luck with it all.

Thanks soooooo much everyone

Yes can def count on dd to grass him up! lol she is always telling me stuff, pre-school don't really tell me much to be honest.

The diary is a very good idea, i think it is that i feel so hopeless at the moment as its the waiting game. Once i know what the issue is for sure i will deal with it head on as best i can and it will be sort of a relief in a way, its the not knowing and hanging around that drives me mad.

bc - good idea about asking if they will give him hearing aids to see him through, i am not entirely sure about grommets as of course i am not at the stage of making that decision yet, my main issue with him having grommets is that the hospital that would be doing it is bleak and i mean bleak! i had a very bad experience with my dd there (if you get bored one night have a search i was pulling my hair out literally) but that is a whole other tale.

I really cannot put into words how much it means to me that you are giving me advice as i know you all have been through similar if not worse with your lovely dc, and to me, people who have been through an experience personally can give much better advice in some ways than doctors because they have lived it.

pucca hope you don't mind me asking on your thread but I was wondering if anyone here knew about what hearig aids would do for a child with glue ear? They would obviously make everything louder but would sounds still be unclear?

Of course i don't mind used2bthin, infact i thought the same myself!

Also i have read that untreated glue ear over a long time can lead to permanent hearing loss, so thats another query regarding hearing aids, as its not treating the glue is it? at that one.

DS2 wears his for both glue ear and a sensorinuerol loss, (possibly caused by a very, very bad infection he had as a baby). The hearing aids are programmed to pick up the frequencies he cannot without them, therefore they work regardless of the cause of the hearing loss. The advantage of grommets is that when they work the sound is clearer than with the aids, due to background noise etc. I hope that makes sense.

As far as I understand it, with regard to speech is if that they have had glue ear for a long time (ie most of their lives) then they will have never heard the sounds needed to exercise their muscles properly by repeating them. Therefore the muscles around the mouth have not been used in the right way at all and speech therapy can be a real slog untill they can hear correctly. Saying all of that DS2 had speech therapy weekly (after a long, long fight naturally!) whilst the causes and treatment etc was being decided.

DS2 will have his grommets replaced again after Christmas as they can also reduce ear infections as well as drain the glue.

Hope this helps.

hearing aids can be useful for a child with glue ear as slightly said, they will never give perfectly clear hearing (they don't aim to) but will improve things. Glue behind the eardrum stops it moving as much as it should, increasing the volume will make the eardrum move more iyswim. Imagine sticking your fingers in your ears then getting someone to speak normally, it's hard to understand, and then shout, you won't hear perfectly but you will get what is being shouted.

Alternatives to grommets (that I've heard of but not tried) are cranial osteopathy, dairy free diet, antibiotics and a nasal balloon (otovent). Worth googling if you're interested.

Thanks pucca. I too am worried about the damage all the infections are doing and DD is constantly playing with her ears and pulling at them. The doctore has said aout putting olive oil in for the wax but I don't know how it will help with the glue ear other than enable her to see and stop infections as soon as they start. The doctor's main problem with grommets was that she said they could leave scars on the ear drums and affect hearing later on but if it can be affected by glue ear too...

Thanks slightlycrumpled (hi again )thats a really good explanation. The muscles bit really fits with my DD. The ear infections started when she was one so a really crucial time for speech development. She's now three and has basically spent the last three winters with limited hearing.

Her hearing is noticeably worse in crowded places with lots going on which is why I wasn't sure about hearing aids bigcar but that does make a lot of sense. I have thought of trying cranial osteopathy and still will possibly. The Gp mentioned antibiotics but with her medical stuff I am not keen to add more to the mix. Although glue ear has added to the mix anyway of course!

Well he had his other test today, and he still has a moderate loss. They have said that his uvula (dangly bit in throat) has a ridge which indicates its a prolonged case of glue ear, so grommets wouldn't be possible, no point.

So they have taken a mould for his left ear today,(the worse ear) and he gets a hearing aid next month. His air pressure test was completely flat on both ears.

sorry to hear it hasn't improved. I've not come across that reason before, maybe another call to the NDCS is in order At last though they are doing something, that must be a relief, how are you feeling? Fingers crossed this will help your ds and his communication. Did they let him pick a colour or picture for his mould?

Hi bc yeah i have been googling and found not very much tbh, they also said he has a soft palate and that one of his eardrums is tucked under or something

Yes he has picked spiderman for his mould, i am feeling a little sad but pleased it is getting sorted for him i just hope nobody picks on him or anything in pre-school/school.

spiderman, ds1 thinks that's cool! Are they referring to the sensory impairment service? If not get on to them yourself, they are usually connected to the education authority, you can often find a link on your local council website. They should provide training for the preschool about caring for aids and also how to talk to the other children, they should also provide you with a little support! Ime small children are usually interested in hearing aids and the reasons for them and are generally very accepting, especially if he has spiderman ones

Lol @ your ds1

Here is a link to another thread bc...seems there may be more going on with ds than just the glue ear.

here