Glue ear and SALT questions

[used2bthin]

Sorry I have had threads which are similar to this but am aware that I need to push for things with DD (she already has medical issues so I am very used to that).

DD has glue ear and possible underlying deafness in one ear. We've got an appointment this week to discuss options (probably grommets and hearing aid). She's been having SALT for almost a year but not very often. The SALT has said leave it till her hearing problems are sorted. I can see her point but feel this is unfair as DD still needs help (especially as the SALT also felt she could have weak muscles in her jaw which mean she can't make sounds properly)and the heaing issues may not be sorted for months if they are at all!

We have got the nurse coming out this week too to talk about DDs over all development so I will bring it up with her but I just wondered how reasonable it was to stop SALT for the time being? I rang the SALT again to say I was worried it could be a long wait and all she said was call after thr appointment when there was a plan-I got the impression she wasn't about to change her mind though.

So my questions about that were-is it normal practice not to have SALT if there is a hearing problem? Would it really be pointless? Also how likely is it that DDs hearing problems could be affecting the way she says words-train is said as bain for instance.

Finally, DD has pulled at her ears so much at the weekend that they are bleeding inside (but not FROM inside iykwim), she seems to have a lot of wax and has shouted about her ear a lot whilst grabbing them. Glue ear related? She could be hearing funny noises due to glue ear? Infection?

I know there are a lot of questions there but answers or suggestions for any of them would be greatly appreciated, I am a bit anxious about it all and over whelmed as I feel I have just got to grips with her genetic condition and now having to learn about something new.

Really sorry one more question-is it ok to take Dd swimming? I haven't since the second glue ear diagnosis.

Hi Used2bthin, it sounds as though you are gradually getting lots of answers. Must be a lot to take in. How old is dd now?

Hearing loss was never one of my specialist areas but i'll try to give my opinion, for what it's worth:-

Are you waiting for an appointment with ENT to discuss possible grommits?

Do they think that the glue ear is causing the deafness (sensori-neural hearing loss) or something else more permanent (conductive hearing loss)?

I would think that the slt feels that your dd would benefit more from therapy once her hearing problems are sorted out. At least once a plan is in place she can decide what sort of input would be appropriate. In the meantime, I would request a programme of areas to work on and activities from her that you can do at home.

Obviously, children who are deaf often have slt and would also be seen by the teacher for the deaf if profoundly and permanently deaf.

Hopefully, this is only caused by glue ear (which is a build up of liquid behind the ear drum) and can be improved by the grommits.

The hearing problems could affect how she speaks if it is bad enough for her not be able to hear the difference between sounds that other people make. p/b or k/g for example could easily be confused.

However, dd's speech sound problems could also be affected by any muscle (mechanical) problems as well as a sound system (phonological) problems.

It may be difficult to tease out the cause and is possibly a mixture of all three!

Do you think she had an ear infection at the w/e which was why she was pulling at her ear?

I would ask ent consultant about the swimming.

Feel free to email me again if you want to (do you still have my hotmail address?). I'm very happy to attempt to answer any more questions

Sorry, rather long and trying to get tea ready for dcs so apologies for any poor spelling or things that don't make sense

Thank you good to hear from you, hope you are all well? I will email you that would be great, will answer on here for now so as not to confuse things.

DD is nearly three now. She speaks a lot more than when we first "met" but is still quite far behind even younger friends.

I a worried about a possible ear infection as she has had a cold. Although she has no other symptoms other than behaviour stuff which often happens. No stuff coming out of her ears though and no fever so I will play it by ear I think (ha ha).

She has got glue ear and has got an appointment on thurs to discuss grommets. Also the audiologist was unsure about her left ear and suspects there may also be underlying hearing loss seperate to the glue ear so they will do a proper test on that.

I think the SALT may not really know where to start as there are so many issues, as you say it is so hard to pick apart. For example DD says bum for phone .She really watches me when I say phone and I emphasise the FF sound, she attempts ff ad seems to copy what I do but then sort of says sssff bum so it is as if she doesn't realise that she isn't saying what I say.

Is the teacher for the deaf someone she would only see at school? I think the thinkng was that if she has hearing loss in her left ear it was not severe though so she probably wouldn't be seen by them I am guessing.

How old is your DD?

She is nearly three.

bump

Sorry I've been busy and couldn't answer before. DS (2.4) HAD glue ear but it cleared up over the summer. The glue ear was picked up when he was just under 2 but we don't know how long he had it for. He doesn't speak at all, except for three words and a few animal sounds.

He was first checked by an audiologist, who wasn't keen on grommets as the glue ear wasn't too bad and there was some vibration of the ear drum which means that DS could hear many sounds. We had steroid drops prescribed by ENT and everything is now clear. We will see ENT specialist every three months to see if it comes back. We've had 3 assessments with SALT and DS' receptive language is excellent. So we figured out that with a bit of extra efforts from us he will just start at some point. We do Makaton sign language wiht him and he knows about 30 signs.

I spoke to quite a few people about this, and I found that the best way really is to try not to 'rely' on SALT too much and try your own thing at home. There's a very good book called '50 best games for speech and language development'. We have 'transformed' a small room in our house into a playroom with toys and tools to help him speak (a mirror, a microphone, some musical instruments, other toys like a puppet and a farm that encourages him to make animal sounds, etc...) and we do our own thing.

I figured that we can't really go wrong with the play thing. We speak to him loudly and very short sentences and do lots of games involving repeating sounds which have B, G, D sounds, get him to imitate various sounds that we produce with the musical instruments, and practice pulling faces in the mirror so that he can develop muscles around his mouth.

I am not at all a qualified speech therapist but really, it can't hurt him to do these games. It's great fun anyway, and he gets a bit of special time every day.

We do have follow up appointments with SALT and ENT and Audiologist, but in the meantime we're doing our own thing.

on a different tangent, have you thought about taking her off dairy ? My Dd was diagnoised with middle ear effusion & it was suggested by the audiologist that I do this & that they'd had good results (he added that the ENT guys are sniffy about this). DD2 wasn't hearing all sounds when asked to move the wooden men out of the boat (if that's the same test you have)
3 months after no dairy - gave rice milk + sheeps cheese as alternative - one ear was clear of congestion. 3 mths later, both ears clear & she can hear all sounds in both ears. She is seeing a SALT for 3 mth assesments & attended a little class over the summer. Since just before her hearing diagnosis of being able to hear, I noticed a major improvement in her listening & repeating words.
My DD is now 3 & we got in the system about October last year. She is also back on dairy & we've had no problems, although she will be reviewed again in October.Sometimes you just need to clear things out I guess.

DS1 (now 4.8) has sufered with glue ear since 18 months. His first pair of grommets made a huge difference with a noticeable imprvement in his hearing.

Colds or swimming continued to biring about a perferation and dripping puss. However we have continued to take him swimming as I believe it is something he (a) enjoys and (b) important safety consideration. My understanding is that it should only be avoided with a large perfereation.

We put in plugs and a headband to hold the plugs in place.

A few months ago he had substantial earing loss in both ears so we had anopther pair of grommets put in a couple of weeks ago and had his adenoids removed. I have not yet noticed an improvement in his hearing. His speach is not impaired though.

One of DS's sons had delayed speech and glue ear. The transformation after his grommets was remarkable. Almost an instant turnaround in his speech and behaviour.

IMHO (with all due repect to Feeling40) I am highly sceptical on the dairy front - there are no supporting data nor scientific rationale to support it .

Oh and on the swimming note, I would but try not to get water in her ears. I have found that in a swiming pool, the deeper ones where I can walk easily with DS in my arms, that he imitates lots of the sounds that I make. I don't know if it's because of the echo, or because his face is close to mine for a long time, or because there's not many other distractions, but we sent swimming often during the summer and he got to make many new sounds that way.

Thanks all, some things to think about there. The dairy issue does interest me as she has psoriasis and excema which can also be due to intolerance and also I was intolerant to cows milk as a child. But I feel that as her language has (possibly-and if I'm honest hopefully)been caused by the glue ear, I think if we are offered grommets we will say yes as her delay is affecting her so much and she is getting closer and closer to shool age. Great to hear your experience though and it is something I will consider in the mean time.

Sorry to hear that our DS had to hae them redone, dophus it is a worry especially as DD has other medical stuff going on and has already had two GAs and will need more in the future. Great that there was such a big improvemnt initially and for your friends DS though.

Bluberrypancake you are right, I have got "Two to talk" by Hanen and have been working from the ideas there and also stuff the SALT gave us before. Its just nice to have guidance with that sort of stuff and I feel its a bit unfair to leave her when she is at such a disadvantage with it all, crucial age etc.Very good advice not to rely on them though and I will look up that book.

As for swimming I will see how tomorrow goes and how quickly they are proposing to fit grommets. It would be a shame not to go as she loves it and will lose confidence f we leave it too long.

Today DD said a whole sentence, I only realised after she repeated t several times. Her speech is so so unclear and she only says the middle of each word but I think she is trying which is great as at one point she seemed to have given up.

Quick update. DD s hearing test today didnt seem to show any underlying hearing loss (it was te toys and bus thing.)

The glue ear test showed glue ear in one ear but not the other. So they have discharged us. I'm now worried as we will be back to square one if it comes back in tat ear and in the mean time she still has one ear with it! I rang the SALT anyway because at least we can get on with that now.

I've been thinking long & hard about the reply to my experience of removing dairy from my dd's diet.

What I would say is, I did it for her & she doesn't need to have grommets. Having grommets requires an GA, so surely it would be worth trying something that really is surprisingly easy. There was a result with her within 3mths, she started reapting words after I've said them & now she has very wide range of vocabulary.

We saw the speech therapist the other day & she advised that her speech is improving. 3 mths ago she was doing the same as your DD, just saying the middle. Now she has the end of most words & is starting to get the begining. We'll be going back in 3 mths.

Just to recap, dd had rice milk with her cereal, I gave tuna mayo in sandwiches/peanut butter/sheeps cheese/makeral pate as the protein. The soya yogurts didn't go down well, so she had the soya icecream, which you buy from Waitrose. I'm so desperately relieved it made a difference.

The other option you have is a cranial oesteopath, which I'm sure your health visitor could recommend.
Good luck, I feel for you.

Hi FeelingForty, than you it sounds like you have had a great experience from removing dairy and I certainly agree it is worth a try. I wasn't saying I wouldn't try that btw just that I was desperate enough to want to try grommets if offered as I think DD has been badly affected.

It can be so hard to know where to start with this sort of thing and what is causing what. I considered a cranial osteopath and a friend asked her DD's one about the treatent for glue ear but I decided to wait for the repeat glue ear test just to check because I wanted to know wht was what iyswim. For instance, now that it has cleared in one ear with no treatment, I would have thought it was the cranial osteopathy that cleared it. But in a way it doesn't matter what helps, as long as it gets better so I will probably try both cutting dairy and cranial osteopathy or chiropractor.

I have recently cut out dairy for various reasons ad DD loves my soya deserts so thats a start!

As for the cranial osteopathy, I am tempted as feel I should do something now that audiology have discharged us. But I wouldn't wnt to do it if it would upset her as she has had such a lot of painful medical intervention-in fact this was seen as the cause of her delay at one point.

Meant to ask, how strict did you have to be with the cutting out of dairy? DD loves cheese too, have you come across a good alternative to chedder? I ask because I never have! We use lactose free cream cheese but I am never clear on the difference between dairy free and lactose free.

Hi, my Dd had a hard sheeps cheese, which I bought from waitrose. It's quite mild, to say goats cheese, but my other Dd refused to eat it. You could try just substituting other fillings, then re-introducing the sheeps cheese. They both had to go without their favorite macaroni cheese for about 4 mths, but it was worth it. The ice cream I mentioned earlier is swedish glace, from Waitrose & Tesco.

Cows dairy was completely eliminated for 5 mths, then I started to give her organic cows milk in cereal, then the odd cheese sandwich. She does now eat dairy, probably about 2 portions a day. I did notice a difference in her reapting words after about 3mths. I also noticed that when she had a cold, her mucus was clearer & more watery.

I think cranial oteopathy is supposed to be very gentle ? I am thinking of taking DD1, because she is quite highly strung & sensitive, had a ventouse birth & I think it may have affected her.

HTH.

The other thing which is really helpful is listening to the nursery rhyme tapes/cds, we have them on all the time !

utbt

have only skimmed this but email me. I've got a headband I bought for dd to protect her grommets when swimming. But she don't have them now and wears aids so you can have it if you like. I can send with the dvd

DD has just started repeating recently-it makes a massive difference. Its still quite a novelty!

The problem I have with removing dairy that I didn't mention is that DD already doesn't have anything red because it makes her skin flare up badly. Poor thing, she loves tomatoes, baked beans, strawberries and raspberries and can't have any of them! Cheese is her favourite food! She already doesn't have yogurts as they also aggravate her skin. I will struggle without cheese as use pesto on pasta and make a cheese sause to put over cannelini beans to add to jacket potato to try and replace baked beans. Hmm...I will check out tescos and waitrose, sounds like they have some different stuff (our local supermarket is sainsburys but may be worth shopping around a bit).

Interesting that the audiologist mentioned cutting dairy, I have never been able to get any doctor to say anything positive about changing DDs diet, even the dermatologist was quitenon commital when I said what a difference it makes to not give DD tomaoes etc.

Thank you I e mailed you this evening, that is so kind of you. Would the headband work even though my DD doesn't have grommets? If so that would be brilliant.

..the audiologist actually said to me that ENT don't support it. The audiologist stated some parents have had excellent results.

My Dd's love macaroni cheese (gina fords recipe) but they went without it, we have it about once a fortnight now.

You can buy dairy free cheese sauce, I've got some, but not keen & if you are really desperate, you could make a cheese sauce with rice milk & just add the sheeps cheese. I've did try this towards the end of the dairy-free & it was fine.

I didn't realise pesto had cheese in it, perhaps you could find a dairy free one ?

sorry thought she was getting grommets. I didn't read properly

Dunno how useful it would be just for nekkid ears. The idea is that as grommets open up the ear they can thus be more susceptible for stuff coming in the other way/ more prone to infection

We were told that swimming was fine but make an effort to not get ears under water etc - esp at first. Bit tricky with a little one

So I bought this band but grommets fell out soon after anyway

Hi
Our family is doing a saliva test at a hosp to see if the need for grommets can be hereditary. I had adenoids (out) and grommets (in!) a few months back, DS1 had the same and DS2 the grommets and it has worked absolute wonders for us. Can't recommend them highly enough, is so awful not being able to hear properly!
Masonic, DS2 is doing swimming lessons soon (no WAY he won't put his head under water!!) - would you recommend the headband? Have got the earplugs already.

our ent recommended. Designed to be used with the plugs. See what you think

Hm I have given up ytaking DD swimming for now as she kept getting ear infections after. Then with the glue ear I wasn't sure if it was a good plan. She was meant to be getting grommets masonicpixie but now that one ear has cleared they have completely discharged us. Which is great so long as the glue ear doesn't come back in that ear but it probably will when winter comes.

Thats interesting about the saliva test busybutterfly, I've heard about the adenoids but no one has actually menioned them i our appointments,. I've also just realsied that we haven't actually been seen by ENT still! We've had three hearing tests with community paeds, two of which she failed. Then one hearing test with audiology which she passed parts of but was still found to have glue ear in one ear. I think if she gets another ear infection I will ask to be seen by ENT this time as presumably they would be more able to discuss the options.

Thanks Masonic, very useful. u2bt, we were on a so called urgent list - 10 weeks after the letter was sent (having not heard a thing) I chased it up myself and got an appt v quickly. Pays to be a bit pushy methinks!!