surport thread for any one with hearing trouble, or just starting out with tests

[trace2]

hi i have started this thread as found there is a few of us just starting out with hearing tests adults and children welcome, and those who already gone through it help us understand and hold our hands

Marks place :)

Link to old thread so anyone that doesnt know where we are all up to.

Here

I heard back for the audiologist today, she is going to ask for DS to be seen ASAP but she couldnt say how long that would be and added that it still might actually be 8 week anyway!! she recons that ENT will have me in there system by mid week (ish) so im going to call them and see if we can be put on a cancellation list or something!

DS has his first proper SALT assessment tomorrow! we've been waiting for this since last October!!!

thank you 3cutes i hope you hear some thing soon? i have not had a phone call that i was promised on Friday will give them till wed then ill ring back! dd is off school today with an ear infection first sge ever had

Oh no your poor DD!! ear infections are just awful, how bloody typical is that!?!

Found you!
I agree the waiting is awful. It took 3 months on the waiting list to get from the doctors to audiolgy for dd. I wasn't panicked, I thought dd had got glue ear like I had had as a child. In fact, by the time the appointment came I felt like a time waster as dds hearing had improved.

She was diagnosed with severe hearing loss.

Dd never had the newborn hearing test (born abroad). She had passed every distraction hearing test. Yes she was a very late talker but then so was I. She had very limited vocab for her age but she rarely spoke outside the home (3 months before she spoke to nursery teacher, a year before she spoke to the dinner ladies). She used made-up words. I had to translate for her to others. She had "tantrums" and hit others a lot and was really defiant but that was just terrible 1s, and 2s, and 3s...

The reality was that she compensated by heightening other senses. A draft as a door opened or the vibration on the floor would make her turn around if you walked in the room. She learnt to lip read. Not understanding things that were going on around her made her so angry and frustrated that she would breakdown, lash out or switch off. She had a major communication problem but couldn't tell us, and we in our ignorance put it all down to her age.

A few years on and dds sensorineural hearing loss is now mild-mod. The glue ear (which caused fluctuations in hearing up to severe loss) has gone. She happily wears her hearing aids and still lip reads.

Essay over. Hope this helps others with children late diagnosed realise that sometimes those red flags can so easily be explained away at the time as legitimately something else, especially when the real reason is something you least expect.

Kissingfrogs Lots of what you have posted above is like my DS too.

He passed his newborn hearing test, tho they were done when he was 2 weeks old (he was born at home) and i do recall it taking a while for them do to the test, but i think (cant actually full remember) it was because he kept waking up.

DS will talk to most people, but what he says lots of the time make little sense to most people, although just in the last few months we have a lots of improvements. We have got better at understanding him and he uses a mix of makaton and gestures, which helps lots, id say we'd gone from not understanding him 70% of the time to understanding him 70% of the time. I think starting nursery has helped as he has to try harder, but how exhausting must all this be for him? . He does actually say every morning onroute, no Mummy i tired!! no nursery! .

He too also makes is own words up for almost 12 months when he wanted a drink he would say ma-ma-mar which actually meant drink/juice!! I think he heard one of my DDs say Mum i want more!. Dat-tay was another, which actually meant ambulance!......never did figure out how he'd come to call it that. There has been lots of others and ones we never actually figure out what he is saying, the he will say the same sound over and over.........no wonder he tantrums (and hits, bites, kicks ect!! ect!!) like no other child ive ever met!......and i have a daughter with an ASD!!! so i know the difference between a paddy and meltdown .

Can i just ask how did they know when they tested your DD that her hearing test was not just down to glue ear at what point in the testing was the sensorineural hearing loss picked up?, did the pressure test show the glue ear?. We are hoping that DS hearing loss is just down to the glue, but we wont know for sure until we see ENT.

Trace Hows your DD today? hope you managed a good night xx

Morning see you after dd's appt on Friday (fingers crossed)

aww have been sat cry over kissingfrogs and 3 cutedarlings post

dd was born full time at a tiny 5lb 8 oz failed two newborn hearing tests but managed to pass the third, dd was under lots of peads as having lots of problems with her heath at 2 days old she had really bad jaundice was under lights for 4 days, came home and started to go blue this happened lots of times, then started having seizures plus fail to thrive, only ever took an1 oz a milk so this carried on found she could not swallow things easily and at 18 months was fitted with a gastric feeding tube in this time she had salt for feeding and speech, we all learnt to use makaton which did help, she is a very pleasant happy child but did start to get frustrated at times one salt (we had 4 so far) did say some of the words she can not say is not normal toddler don't usually say!

she as vertigo too and balance issues but not one picked up or said she needs a test we did ask a few times but never got anywhere she then started school with a full statement but our salt once again was leaving and she didnt see one till first day of school in sept last year and spent 10 mins with her and told her teacher she is discharging he and wants her feeding salt to discharge her to0 [shocked] even teacher couldn't understand her. then had 2 hearing tests at school failed both sent to hospital clinic did 3 more tests and told its high frequency hearing loss in both ears and they about the same loss , now we see ent in may 17th and tbh don't know what's happing yet?

You lot have been through so much Trace, lifes a bloody pita at times isnt it? i dont know how they missed checking your DDs hearing after everything she has been through!. Just a thought (and i know nothing at all about seizures) i remember that your DDs seizurs were unusual, was'nt they? could there be a chance that it was the seizures that maybe caused the hearing loss?

I called the ENT appointment clerk today, they have DSs referral and its been passed to the consultant who deals with who see who, and how soon they're seen. If he decides he needs to see DS himself then we will have to wait until the later end of June for an appointment, however if he says any of the doctors can see DS then we "should" hopefully be seen sooner, tho she couldnt say when. Think ill give them another call at the end of the week and see whats been decided.

The SALT came into nursery today and tho she has left us and nursery some idea's on how to help DS she say's there isnt an awful lot she can do until she knows if its just DSs hearing loss that effecting his speech. We're going to try playing game clapping out syllables to help DS break the sounds down. ATM DS cant recognize each syllable to clap them out, but hopefully with practise he will get it. If nothing else i at least feel like im doing something!!! that might help .

3 cutedarling yes her seizures are different and she still as many different ones too , but now we on carbamazipne they are so much better unless she ill or very tired, but the drop attacks are lot less but still as lots of absence ones:(

glad you getting some where now and good idea the salt is going to try!

we had a phone call today her hearing is moderate to server i asked about decimals and she said they only did a basic one and when we see ENT it could change to server as they will check how high her frequency is and told us they may want to do further tests as well as hearing! so still a little shocked ,

and she also said it could be progressive

oh and can i ask how you know about seizures?

God lord Tracy!! that sounds scary, is there no way you can get an appointment sooner?, could you be take an appointment at short notice, if they have any cancellations? why on earth did they tell you this over the phone? you must be worried sick!!

i asked the questions and she gave me answers, she also sending out her graph i have said said we will take a cancellation but the doc is only there once a week and are booked for 10th may but if any one cancels we next in line as we are classed as urgent . plus she says the ENT is very good , and tbh i am not that worried now i just needed to know.

Oh trace, you've got such a lot on your plate with all the worry. It's really tricky getting accurate hearing tests on very young children because it involves understanding and total cooperation on the childs behalf - hence lots of tests. You shouldn't have been told it could be progressive until tests show she has conditions which indicate so.
My dd1 was also a full term 5lb 9oz tiny, born by ventouse so had a huge purple swelling on her head. I'm convinced that was the cause of her epilepsy. She had absence epilepsy, an unusual form of it as she walked during seizures (into danger usually). Zarontin worked really well. She is now thankfully seizure free though it has affected her (that's another story).

Cutedarlings, dd2 was given the standard hearing test then retested using the bone conduction test. This involved putting the thingymajigs (name eludes me) behind her ears so that the sound is heard through the bone, bypassing the middle ear ( where the glue ear is). If the tests results match then the loss is sensorineural as it shows that the hearing loss is beyond the middle ear. A tympometry (sp) / pressure test shows conductive loss ( aka glue ear).

Dd2 had all these tests at her first audiology appointment. Diagnosis was immediate. At no point was it necessary to see ENT to determine her type or level of hearing loss. Dd had 1 ENT appointment about 6 months after diagnosis (he took less than a minute to shine a torch down dds throat and ears) and has never seen ENT since. She has regular audiology appointments.

Got to add: dd had mixed hearing loss - sensorineural and glue at same time. It was pretty straightforward to measure the severity of each - and repeated retesting confirmed the accuracy of the results. I can't quite understand why this isn't the same procedure in other cases (incl those I used to read on NDCS parents forum). These tests were done in Wales.

Mum of a profound dd with cochlear implants and a deaf newborn, do I have pretty much seen all of audiology.

Key tests are Oae's ( what they use in standard newborn screening) essentially measures middle ear function or conductive hearing issues.

Tymps measure the pressure behind the ear drum usually show glue ear type issues

Abr is a test of the brains response to sounds

Vra is an interactive hearing test done on toddlers where they do something when they hear a sound, done in a sound proof booth

Oae's and abr can be done at any age and require a still child but no interaction, hence are used on newborns, usually just oaes but if you've been in nicu or have family history an abr can also be done.

sorry not been around much dd is loads better but her hearing is worse and behaviour we got an app for 10th and sent the graph don't understand it though.

hi hatchypom you do know a lot about it all, you may get more questions
is your children s hearing genetic? only asking because you have two with problems.

HateBeingCantDoUpMyJean how did appointment go today? hope alls ok.

kissingfrogs thank you for telling us about your dd, did she have gromets for her glue ear(sorry can not remember you saying)

We didn't think it was genetic, but certainly looks that way now. Unfortunately, there isn't anyone in the uk that does the specific testing, only in the states. But happy to answer any questions if I can. I also work for a charity that works with deaf kids on their speech and language.

So yesterday went fine. They repeated tge test and basically same result, consult feels it's due to fluid (yay?) but because she is already on meds for rhinitis he said to come back and repeat it in 2 months. So no further on really.

hatchypom same no one will do the tests but it all boils down to money , don't you think?

HateBeingCantDoUpMyJeans sorry your no further forward lets hope the meds work? if not are they going to do grommets?

nervous we go tomorrow!

well back from ent chloe is now classed as deaf she as only mild on normal level hearing loss in both but severe to profound in high frequency we are trying going to try an hearing aid in only 1 not both he said no point in having two to see if it works and 3 monthly tests as they do think it may be progressive .

Joining thread if that's ok as have a dd with unilateral microtia. She is deaf in her right ear, but we are fighting for a BAHA, as our local PCT won't fund it. I hope i can be of help perhaps (also have a unilateral microtia, but no hearing aid - they weren't invented in the 60's ) or just join in?

hi swearytramp welcome ( wondering why the name) lol what's a BAHA am new to this and don't know anything yet!

HI there - I was sairygamp, but just changed it to the above as there have been some threads about sweary nicknames . A BAHA is a Bone anchored hearing aid. It is screwed into the side of the head and conducts sound through the bones. Basically it's for people who have the basics of the inner ear but can't hear through normal nerves etc.