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Posted by ljs78
29/07/20 09:44 PM

My daughter was diagnosed with a severe hearing loss in both ears at the end of last year aged 3 after an ABR under anaestheti.  She has bilateral hearing aids in both ears.  

We are now 8 months beyond diagnosis and being referred to paediatrics to find out why the hearing loss happened (she passed her hearing test at birth) and we are also being seen by the cochlear implant centre in Scotland to further assess her as she doesn't respond well to the audiology tests.  

We have been told she is profoundly deaf in one ear and has severe/profound hearing loss in the other ear and the are now recommending ABR under anaesthetic and an MRI scan.  

I am dreading the thought of a second procedure under anaesthesia but know this is the best thing for her. Has anyone else gone through something similar with diagnosis at a later stage? 

Posted by kirsty
14/08/20 09:01 AM

Hiya, my little boy is 8 months old and has mild/moderate hearing loss in both ears and currently wears hearing aids in both ears I know his a lot younger then your daughter but he had to have anaesthetic for his MRI scan because he wouldn't just lay there & because the whole situation With COVID are MRI scan got put back! if he had it when he was younger I wouldn't of needed to do anaesthetic. He had a nurse with him at all times to monitor his breathing which made me feel so much better! He took the Anaesthetic orally and just fell asleep! Which didn't scare him At all! He woke up feeling really tired but that was normal and took his feed straight, had a sleep and then had his food later on! She is in safe hands and they monitor her all the times! I hope this makes you feel abit better about doing it! 

Posted by missmoo
14/08/20 09:55 AM

Hi, I have twins who were both diagnosed late (2 and 3.5). They both initially failed newborn hearing but passed subsequent tests and were discharged. Now they both wear bilateral aids. Both boys went under for testing. Although one got upset (as parents weren't allowed in recovery, so his distress was more about his surroundings rather than physical pain), the other was fine. The procedures were definitely harder for me than them! 

I dread every review in case their hearing deteriorates more, but what I have come to understand is that as they get older, their results become more accurate, and their aids can be adjusted to improve their hearing. This is of comfort to me. In the early days, tests were hit and miss depending on how the boys engaged - up until about 5 this changed and they became more compliant. Staff are used to this so dont worry about it.



Posted by ceej
14/08/20 10:51 AM

Our daughter was 12 months when diagnosed and 18 months when she had her cochlear implants. 
the first 2 anaesthetics were awful when they were testing and scanning - she was scared. We couldn't explain what was happening and we just had to restrain her. 

I decided that I would prepare her for the operation. We practiced with a pretend gas mask made from a baby's milk bottle. We would all take turns breathing it and pretending to fall asleep and we would do it with her dolls as well. I took it on the day of the operation and we even did it in the waiting room. 

I was so glad we did because when she went in for the op, she cooperated beautifully as if it was still part of the game - taking the mask, breathing and just went to sleep. 

I have continued with this approach. she recently had her preschool booster jabs. We practised with the toy syringe from her doctor's set and then when we went in on 2 separate appointments, she watched it happen and didn't even flinch. Even when there was a bit of blood, she just said 'I'm alright'. 

I hope this helps.

Posted by flamingo123
14/08/20 11:08 AM

Hey my daughter had severe hearing loss in both ears at age 4! Last year She bumped her head at the park and suddenly she was deaf. She was diagnosed with enlarged vestibular aqueducts, and she was given two hearing aids. we now have cochlear implants! we went to the centre in Kilmarnock and they are absolutely brilliant there, they have been so reassuring and welcoming from the beginning. My daughter is absolutely thriving with the implants, her speech is fantastic again and you wouldn't even know that she is deaf when she's wearing them! i cannot reccommend enough, and try to ease your mind with any worries you may have about them. I hope you manage to find some answers soon as I know how hard this time may be for you all! 

Posted by bigninja
14/08/20 11:19 AM

Hi, my son failed the newborn hearing test and I think it may have been as a combination of him been born extremely pre-mature. Once he got discharged home about 5 months old he carried on with the hearing tests at the local audiology. He was then recommended to take the ABR test down at Great ormond street where he did have to undergo local anesthetic which was very scary for us as parents as he appeared to be lifeless. The only thing I would say is that I don't believe the ABR test could be relied upon as the results came through confirming my son to be profoundly deaf which we definitely knew was not the case as whilst we had no doubt that his hearing was impaired, he quite often at that young age responed to sound.

His testing contined at the audiology where we lived and they told us of his levels of deafness and the type which was linked to his prematurity but they insisted that as his impairment will never get get better which would impact on him at school he needed to have hearing aids on both ears. He is severly deaf on one and moderate on the other.  His situation was slightly worst in the earlier years as he also suffered from glue ear and  just around the age of 2 to 3 years old he had to undergo another epsisode of anesthetic to have grommits fitted. Having anesthetic whilst scary to experience is no issue at all as the tests or surgery can get done without your child being concious. the only thing you must make them aware of , is if your child has any blood disorders etc. I must say the grommits did help as it cut down on his ear ache and infections so he only now has to contend with his sensorineural hearing loss managed by hearing aids and audilogy reviews to ensure he is getting the correct level of sound in both ears. I hope this helps you!!!

Posted by sophbalding
14/08/20 12:39 PM

My daughter was diagnosed with Moderate hearing loss in both ears at 2 1/2. She now has hearing aids in both ears and has been wearing them for about 9 months. 
We have had blood test and genetic tests to investigate but nothing has shown a connection to hearing loss with their results. We had been scheduled an MRI but it got cancelled due to Covid so will wait for that to be reschedule, not looking forward to her being under but I think it is a worthwhile procedure. 
We have only had 1 hearing assessmen since she was given her 'earrings' so I am hoping we get another booked soon to see if they are working as expected. 
We got new Moulds in lock down too so would like to know if they are a good fit, they seem to be. 
My daughter also passed her newborn test. 

would love to know how your children have adapted to their hearing aids. We have seen an improvement in speech but not sure she's hearing all the sounds still yet. 

Posted by mshaley2
14/08/20 01:50 PM

My son was 4 when we finally got a diagnosis.  He was moderate to sever in both ears.  He had to do the sedated ABR and was fitted for aids in both ears.  In 11 months he had lost 20% more hearing in both ears.  After we discovered his rapid rate of loss we had to do a CT scan which they kept him awake for and an MRI that they sedated him for.  My son did not handle the sedation well, either time.  So I really understand your fear.  I was still grieving his hearing loss when it all went away in his left ear.  He is now bimodal.  He has a CI in his left and a HA in his right.  For us, pushing past the scared paid off.  He is doing very well in school.  He has passed all of his reading and phonics testing. And his speech has improved greatly.  It turns out that he has malformed cochleas.  They expect his right ear to follow suit and lose all hearing, but it has been two years and it is pretty stable for now.  All the fear you have is so real and heavy, I never knew how hard grieving something that wasn't even mine could be!  Prayers for You!