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Discussion
Posted by mum
01/01/21 04:20 PM

We have just found out that my 4 year old Daughter has enlarged vestibular aqueduct syndrome. She has always worn hearing aids due to hearing loss but due to a recent drop in her hearing futher investigations were made. We were always led to believe she 'just' has nearve damage but this diagnosis complicates things.

Does anyone have any experience of this, especially as she starts Primary school in September?

Many thanks

Discussion
Posted by jk
11/01/21 12:31 PM

Hi

We have some experience of this as our daughter was diagnosed with EVA at about 3 1/2 years old. It was a complete shock to us as she went in for a routine operation to sort out what they thought was glue ear. We very quickly understood that the best way forward was Cochlear Implants which she received two weeks after her 4th birthday. She got on with the really well and the following September started at a mainstream school which she loves and is thriving at.

Discussion
Posted by sparkle
11/01/21 01:30 PM

Our daughter wore bilateral hearing aids and had a very minor bump to her head at preschool with no mark etc but she lost her hearing.  We later discovered she has Pendred Syndrome and EVA.  So although the bump to her head was not serious she must have hit the side of her head and this caused her to become completely deaf.  It is important that everyone who looks after your daughter is aware that any bumps to her head can cause her to lose her hearing.  Our daughter went on to have cochlear implants a day after her 4th birthday.    This has been amazing and she can hear quiet sounds and is doing really well.  She also gets lots of support at school.  She is a summer born baby and we were able to defer her schooling for a year so that she started Reception a year later which gave her time to adjust to the cochlear implants and make up for the period of time when she had no hearing before the operation.  She has an Educational Health Care Plan at school to ensure she gets the support she needs.  She has a TA with her and they use a radio aid.  With Pendred Syndrome children often start off with hearing aids and soon go on to have cochlear implants as their hearing deteriorates.  Have you been given any information about EVA whether her hearing will stay the same or is likely to deterioate?  

Discussion
Posted by granblue
11/01/21 10:12 PM

My grandson had cochlear implants at 4 he has EVA and pendred his speech is terrible and he is really struggling at school. He still hasn't got an ECHP and we just don't know what to do. 

Discussion
Posted by sparkle
16/01/21 07:41 AM

Granblue,

I'm so sorry to hear that your grandson is struggling and not getting the support that he needs.  It all comes down to money unfortunatley.  

NDCS have some online sessions that might help for example there was one on Educational Health Care Plans.  If your teacher of the deaf and the Senco at the school are not willing to go ahead with an EHCP then you can do it yourself.  I can give you some information of what sort of support our daughter is receiving that you can put in the EHCP.  

Have you joined CICS support group.  They are a national cochlear implant group and are fantastic and another source of support.  

It is always a constant fight but don't give up...

Discussion
Posted by granblue
19/01/21 02:51 PM

Sparkle,

His teacher of the deaf is helpful. She is angry with the school as the SENCO are taking ages to sort it out and we now have to start again. He is under Great Ormand and we are hoping they are going to get involved. But any links or info you can on CICS would be much appreciated. 

Discussion
Posted by sparkle
28/01/21 11:23 AM

Granblue,

The Teacher of the Deaf can start the EHCP or help you if you want to do it.  It sounds like the school is taking too long! 

Here is the CICS link.

https://www.cicsgroup.org.uk

Discussion
Posted by nugget
03/02/21 12:56 PM

Hi all, 

Just sharing our experience. My daughter has EVA and to be honest it has been a long learnign curve for us and the school. She wears hearing aids and uses a radio aid at school but she is constantly seekign movment due to teh EVA whch is tough for her and her peers. We had an OT assessment carried out which helped us adn the school put in place some qeuipment to help her (therapy swing at home which has helped generally and figet toys and a cushion at school). We have just been through teh process to get an EHC which was a battle from begining to end but this now stipulates she needs short and regular movement breaks. We are still not quite there as too much MOvement makes her excvited or over fatgired and no enough makes her fidget and unable to concerntrate. Hopefully now with the EhC teh school can be more aware and we can try to all understand what Mias needs better.

To the lady without an EHC on teh tread, we were told by audiology, ToD that our daughter wouldnt qualify but after a long battele led by the school and us she has so dont give up! An EHC realyl signalls to all the school staff my daughter will come into contact with that she does have addiitonal needs and so I am hoping this will help things from now!