9month old partially deaf in both ears

[JennElise]

my 9 month old girl, is partially deaf in both ears, i dont know what to do.. can any 1 help.. the doctors at the hospital are no help!!

Look on the national deaf children's society website there is loads of useful info and a section to talk to other parents. Is your daughter getting hearing aids? If she is she will be entitled to visits from a teacher of the deaf who can answer some of your questions. What sort of stuff do you want to know, my 7 year old is deaf, he was diagnosed at 3.

Hi JennElise - I just posted a couple of days ago about my DS who is 5 months old and was diagnosed with hearing loss at the newborn hearing screening.
Haven't got much time right now - but just wanted to say hello and will come back soon.
As Geogteach has said - register with the National Deaf Children's Society. There is lots of info on their website...

Hi JennElise,

I completely agree, contact the NDCS. They're ever so helpful and friendly, organise free family weekend conferences and have a helpline staffed by qualified, very knowledgable audiologists.

My 7 year old dd2 has had a moderate hearing loss since babyhood - she wears a special kind of hearing aid because her ear canals aren't the right shape for normal aids. Once you get a good audiologist sorted out everything gets a lot easier. The NDCS will be able to advise on the logistics of finding a good audiology dept. as well as on hearing loss in general.

Hello! Yes, another vote here for the ndcs their weekends for newly diagnosed families are really good, have a look to see if there is one coming up near you. Ask away with any questions you have, i'm sure someone will be able to help!

thanks for all your advice, im jsut having a look on that website now!

Hello Again!
Have you only just found out about your daughter's deafness? My DS was finally diagnosed aged 5 weeks, having initially failed the newborn hearing screening. He is five months old now, so although the initial shock has passed, it is still early days for us. We are learning things all the time.
I can recommend the NDCS weekend for families with newly diagnosed deaf children that has been mentioned. We went on it about six weeks ago. It is very popular, so even if you're not sure whether it's for you, I would recommend finding the one in your area and getting your name down on the list - even if it seems a long way in the future.

hi, hope you don't mind me posting; i'm not a parent of a deaf child, but i do teach deaf children. there will be a deaf education service in your area and either a teacher of deaf children or an educational audiologist will be able to arrange visits with you at home if and when you feel they will be useful. they will be able to discuss communication strategies with you and perhaps put you in touch with any local parents/ parent groups who might be supportive for you.

hello! I found out she had some sort of hearing loss when she was a baby, she had 2 have the newborn screening test 3 times and failed each one each time, so then they carried out another test at home- that showed she could hear a lile bit but only out off her left ear.. we then went to the audiologist they carried out other test, but because she was only a baby she wouldnt keep quiet and still enough for them 2 do the test properly- they said she could hear the highest pitched stuff and to come bk when she was older.. i then took her on 2nd march wen she was 9 months.. they said nothing had chaged and she has loads of wax... and we got to go bk in 3 months...why dont they do something for her now sooner than later??

Poor you - although it was awful at least we had a definate diagnosis straight away.
I think the audiologist will write to your GP and Health Visitor to let them know what is happening (ours did anyway). Do you have a good relationship with either GP or HV? Maybe they could explain it all to you - as obviously the audiologist hasn't been clear.
I'm sure the NDCS has a helpline number you could ring too - and they might be able to explain why no active treatment has been suggested straight away. They also have lots of information leaflets you can ask to be sent to you.
One question I would ask is why they didn't try and remove the wax. I know this is sometimes possible - although we haven't had it done. Obviously all cases are different and maybe it wasn't an option for your daughter...
Our DS was fitted with hearing aids straight away - but he has what is called sensori-neural hearing loss which is permanent. He also had congestion which made the situation worse but has improved a bit. I don't know much about hearing loss that is caused by congestion alone but if that is what your daughter has maybe that is why hearing aids wouldn't be appropriate right now??

Hi JennElise, I would say definitely ring the ndcs helpline and ask for one of their audiologists to call you back and go over what they have said to you and see if it sounds reasonable to them.

My dd3 wasn't diagnosed until she was just over a year old for much the same reasons as your dd. If you're not happy then you need to say something and ask for an alternative, that's what we had do to do in the end. If you don't want to wait another 3 months, ring and ask if they will fit you in sooner, explain to them how concerned you are. I totally understand your frustration and hope you can get some answers soon x

And ask for copies of clinic letters that are sent to your gp after each visit, some doctors do it routinely so it's no big deal to ask!

Hi bigcar - do you mind my asking what type of hearing loss your DD has?

I have been under the impression that it was the congestion/glue ear that causes problems diagnosis-wise. I didn't realise it wasn't possible always possible to pin down the sensori-neural type early on...

Hi fruitloaf! Dd3 has a sensori-neural loss with a dollop of glue ear on top just for good luck The problem was that when they did the newborn screening (4 times!) she was awake, the tea trolley went past, she moved, probably had fluid in her ears left from delivery etc, in the end we were discharged without an answer.

Then just to add to that, the follow up was absolutley crap, took them months to make an appointment that then got cancelled a couple of times due to staff shortages, holidays etc. Because by this stage she was a lot older and they were using the distraction tests rather then the probes they couldn't really tell, she was obviously hearing something so they just kept saying come back. In the end we asked if they could do something else instead of keep leaving things, so they gave her a light sedative and did the tests properly, but it wasn't until she had the grommets at 18 months that they could say exactly what was sensori-neural and what was glue, turned out the glue made very little difference.

We hadn't chased the audiology appointment because from being a few weeks old it was starting to become apparrent she had quite a few other problems and hearing just went to the bottom of the list. We found out last year that she has a genetic syndrome called hypomelanosis of Ito.

That's the long answer well done if you managed to follow all that! The short answer is that, yes, they can pick sensori-neural deafness up early, but it is very dependant on how good the service is in the area you live in and how much you are prepared to push for! To be fair, all the other services and departments have been fab

How's your ds getting on?

what does Dd3 n Ds and stuff mean?? Elise had tose distraction tests they are stupid of course she is goin to look the the distractions!!!

Dd3 means dear daughter number three, ds means dear son.............

If you click on "useful stuff" at the top of the page there is an acronym list which will tell you what all the abbreviations mean (took me a long time to figure it all out!). I can't wait till dd3 is old enough for the more accurate testing, it just all seems so random at the moment. Keep on at them and make a bit of a fuss if you have to, i'm sure there must be a way of finding out if there is a problem. Maybe a sedative and the ABR test is an option for your dd as it was for my dd3.

Hi bigcar - blimey, our experiences couldn't have been more different. All our testing was done at home - so I just sat in bed alternately feeding DS or holding him in the same position while he slept and the audiologist was able to get the whole lot done, including the bone conduction testing, at one sitting. It took 3 hours but really no stress at all other than wondering if my bladder could hold out!

I realise telling you this may make you and JennElise want to poke me in the eye but thought maybe it wouldn't hurt your audiology depts know the service other areas are able to provide. I guess it's likely they already know and it's a question of funding.

We have just been told this week that DS's congestion has cleared and therefore is likely to be hearing more than he had been. No formal testing of this tho for 3 or 4 months. He is due to have some genetics testing in a couple of weeks.

Sorry to hear about the other probs your DD3 has. How old is she? I can't pretend to have heard of that syndrome but will have a little look on t'internet in a mo. I have to say I feel a little wittering on about "just" deafness when there are so many others things lurking out there.

JennElise - how are you getting on? Have you had any luck with getting advice from NDCS?

Dd is now 3 and was diagnosed Deaf at birth - she has a profound loss.

The first few months are very strange,as once people's intial support wears off, you have a baby who looks like any other, so it is dificult for people to relate to the difficulties deafness presents.

It does get easier - as everyone has said, contact the NDCS and depending on where you are there may be other support available in your area. Funding for deaf children varies widely - you may find you have to shout loudly to get things moving. It also gets a bit easier when you understand all the technical stuff a bit more, so you know what they are on about.

Hi fruitloaf, of course I wouldn't poke you in the eye that's the way it's all supposed to work! Like I said before, audiology here is particularly crap at getting things sorted appointment wise but they do know their stuff when pushed and I couldn't complain too much about the service now we have the diagnosis, it was just the whole performance of getting there. Looking on parent place we are lucky in that dd3 has appropriate hearing aids, nice pink ones and also a wide choice of colours/pictures for moulds , it makes a lot of difference as they get older if they have some choice!

Dd3 will be 3 in 3 weeks, time really has flown. Not all of her doctors had heard of hypomelanosis of Ito so I wouldn't worry

Great news about your ds congestion clearing makes for a good day all round! Hope the genetic testing goes well.

Hi Catrin, that's so right about the technical stuff. Guess that's one of the great things about the ndcs weekends that they go through all that and you don't feel stupid asking all those questions you always felt were a little daft! It also means you are more confident to ask for things from your own audiology dept and question what they say.

Hi JennElise, hope alls well

Is she a candidate for acochlear implant?