5 month old with hearing loss...

[FruitLoaf]

Does anyone else have a baby with hearing loss?
Have had a quick look through and couldn't immediately see anything on the board.

Yes, DD, age 8, has a moderate hearing loss and DS, 4 is profoundly deaf, DD2, 6 is hearing.

I know they are not babies now but were diagnosed through the newborn screening so we knew from a very young age.

Oh thanks for replying. Don't have anything specific to say - other than am feeling v down about everything today.
Yet another hospital appointment tomorrow...

why are you feeling down? What appt do you have tomorrow?

mamalino, does your 8 yr old have a hearing aid. We are about to start on this path with my 10 year old daughter who has had 3 sets of grommets for glue ear.

vjg13, yes she has two hearing aids. Her hearing loss is genetic and the aids are a great benefit to her, I'm afraid I don't know a lot about glue ear though!

ENT consultant tomorrow - just a routine first check I think. Also having ear moulds re-done and tympanometry to see if his congestion has cleared. (5 month old DS with mixed hearing loss, profound in left and moderate/severe in right).
Then teacher of the deaf due in the afternoon....
No reason for feeling down particularly - just all gets a bit much sometimes...

Fruitloaf, yes, there does seem to be a lot of appointments at first. It is a nuisance if you have to attend the hospital rather than a local clinic!

My advice would be to talk through any concerns you have with the TOD, ours have always been very helpful. There is a parent place forum on the National Deaf Childrens Society but tbh I have found there are some quite negative reactions to deafness on the forum although the NDCS themselves are fab.

I know the appointments can get you down but I think it's important that you don't see the hearing loss itself as negative...hope that makes sense! Do you have a reason for the loss?

I picked a really daft time to do this. Tea, bath and bedtime! - have just started weaning DS and also have DD aged 2.
We also have a good TOD - and are also members of NDCS.
No reason for the loss yet. Have seen the Paeds and the first round of tests don't show up anything ie: no syndromes going on. Apparently strong possibility it is genetic as is classed as a severe loss with no family history - so another lot of blood tests in the pipeline.
Thanks for taking the time to reply - think will go and have a bath myself now and try and snap out of this mood.

Ds1 had hearing aids from being around 1yr old-they had lovely little sunshines in the ear moulds (I kept them, hes 7yo now). Turned out his hearing loss was due to Glue ear and a lack of response (he has Angelman Syndrome (sld)-not known for hearing loss but, but many have repettative glue ear/infections etc). Had grommets done 3x now with improvement after te last op so far, I said we would go back to HAs next time rather than operate again with no guaranteed results. Realistically though, he would never keep them in now, same with the glasses he needs! Sorry you are feeling low about it, enjoy your bath, have a glass of wine and think about joining your local college to learn BSL (if you havent already done it). My extended family all sign and we started to sign with DS1 as a baby before we knew about any of his problems, I am also showing my toddlers the signs I can remember and they are picking it up really well!! (2&3yo). Best wishes x

monstermansmum, did you find it difficult to get your son to wear his hearing aids? Any hints or tricks?

My daughter still has glue ear and the ENT consultant feels another set of grommets may risk perforating or scarring her ear drum. She had her glasses from about age 3 and it was very hard to get to accept them so am dreading the whole thing. I'm not sure how compliant she will be when they are even doing the ear moulds.

Tbh vjg13, I dont think he would keep them in now!! (he does have SLD and a tendancy towards mouthing objects). When he was a baby we were constantly replacing his right ear as he was removing the left and vice-versa!!! I do know that if the glasses or HAs are making things noticeably better then he would tolerate them better and for longer periods of time. If you are scared of losing one or both of them you can always tie some thin elastic cord to the tubes (NOT tightly!!!), that way at least when they come out they'll not go far. Just make sure that the cord is thin enough not to irritate the ear. I think you may be able to buy something similar. Also keeping his hands occupied helped. Doing the ear moulds wasnt a problem-they used a wax I think and it didnt take very long.

Thanks monstermansmum, will just have to see how her next hearing test is and then where we go from there. She is booked in for a sinus washout and examination in April so that may help.

Fruitloaf, hope your appointment goes well and the day isn't too overwhelming. It's awful when your child has lots of appointments and you have more than one in the same day.

Hi fruitloaf, hope your appointment went well and you're feeling a little better today My dd3 is deaf, profound left, moderate right loss, she's just coming up 3 this month and we only see the audiologist about twice a year now with the odd extra trip for new moulds, it does get easier.

monstermansmum, you can buy an Olivers kids clip from connevans.co.uk (tried to link but couldn't get it to work!) but we got the olivers paediatric care kit for free when given the hearing aids and have managed to blag another kids clip for free from the audiologist!

hiya my lil girl is 9 months and is partially deaf i both ears.. i really dont know wht 2 do...

Hi All - Thanks again for the replies the other day.
I think it's the anticipation of the appointments that gets to me. It is still early days for us and there's always the thought that another bombshell might be dropped on us.
Anyway - we actually had some good news this time - in that DS's overlying congestion has cleared. We won't know how this will improve the level of deafness for a few months yet, but at least an improvement!
at the collecting of ear moulds - we have kept his first set (at five weeks old), and the mistletoe and pudding ones he had over the christmas period.

Hey, Just saw this and had to post. Ds2 is almost 11 months old and profoundly deaf. It was picked up in newborn screening and the loss was confirmed at 5 months old. He also has glue ear on top of this and is about to have grommets! We are in the cochlear implant assessment and so far it looks like he is suitable and should be impanted in the next few months (provided the mri doesn't pick anything up). I echo what everyone else says, the ndcs are amazing and we too went on a newly identified weekend a few weeks ago which was brilliant.
The reason I posted was to say it does get better!!! So so so much better! When we found out about ds2 I was a wreck, I cried, I screamed, I threw up constantly for no reason, I could barely even talk. I remember going on the NDCS website and on SEN boards and thinking 'I am not like you people, I am young and healthy, why should my child have anything wrong with him?' I know that is a frightful, awful, terrible thing to think and I am very ashamed now but at the time grief does some strange things . I remeber people saying to me there will come a time when you won't even think about your child's deafness and thinking 'pah yeah right!'. But you know what? Its already happened. Ds2 has taught me so so much and his hearing loss really is such a small part of him. He is happy, communicative, cheeky and such a fun baby. He has connexin 26, which means there was a 1 in 4 chance any of our children would have been deaf but it also means there are no other issues attached. In his case, it also means he is as deaf as you could imagine. No response on an ABR at any level, tone, pitch etc and his hearing aids only give him minimal environmental noise BUT he is the most communicative child of his age at nursery. He has about 6 signs, understands around 20, blows kisses, waves and babbles noises such as 'mu mu mu' ALL the time. Deaf babies are the same as any other babies I promise. They just try harder to communicate Hopefully ds2 will be implanted but even if he isn't I know he will be ok. What he had brought to our family is amazine. Ds1 who is 5 has a fantastic relationship with him, he speaks and signs to him and they communicate and play constantly.
I'm sorry this is an essay but I just wanted to say PLEASE try not to feel sad, your baby will be fine and with every day it gets so much easier. If you need to chat to anyone about it I am always happy to answer. You can get me on here or ask for my NDCS parent place name and email me through that, or facebook. If not you can also just ignore me of course, i won't be offended!!! I just wanted you to know you're not alone

sorry, confirmed at 5 weeks not 5 months

Thank you paranoidmummy - what a lovely lovely message. I saw it on Friday and it brought a huge lump to my throat. In fact, I have another one now having just read it again!! Please don't apologise for the essay - it was just what I needed at just the right time .
We have just had a lovely weekend with BIL and his family, it is a lovely sunny morning and DS's new moulds have tubing locks which seems to have sorted out the feedback problem. I am finding them a lot less stressful and more inclined to persevere with them!
So - more than for me so far this week!!
We are having the Connexin 26 blood test in a couple of weeks.
Oh dear, sorry - have to go - DS is demanding attention.... Thanks again...

Hi paranoidmummy - I haven't used the NDCS parent place forum yet, but will go and have a look now.
What is your name on there?

bumping myself hoping to catch paranoidmummy...

... and hoping this is acceptable MNetting ...

Hey guys,

Quick post as at work. My name is emilyg on there . So so pleased my message helped and made sense. Contact me anytime
xXx