AV UK

[Chris Campbell]

I thought I might post a blatant plug. Our experience of AV therapy has been wonderful. Alice's progress, in no small part, can be laid at the door of AVUK in Oxford. Their approach is proactive and supportive beyond our hopes and dreams. If you've not come across them yet, their website can be found here:

www.avuk.org

[marleysgirl]

Thank you for this link, I'd never heard of AVTherapy but it sounds like it could really help our little boy. I've contacted them to see if there are any outreach services available, one of the certified AVTherapists seems to be based where I live.

ANSD needs a better profile in the UK, I've found out more today from the Alice Blog than I'd found in a year of googling!

[Chris Campbell]

Thank you so much for your kind words. We started the blog for cathartic reasons but it does seem to have grown rather beyond that.

Slightly worrying that it is pretty much the first thing that comes up when you google for ANSD. Just goes to show how little info there is out there.

AV are wonderful. There are, so far as I am aware, about 8 Cert. AVs in this country (although AV are helping to train more). There are also a couple who have come here from abroad.

So far as I am aware, Manchester, Nottingham (Ear Foundation), AVUK, Christopher Place all have at least one, with AVUK being the only dedicated centre. They also have a london Clinic

[marleysgirl]

I've dropped AVUK an email to ask whether I need to go through them to contact the Certified Therapist in Manchester, or whether I can contact her direct ... no response though, four days later. I'll give it until the end of the week and then just drop her an email to her published address.

I've got a friend locally, Mum to a premmie born roughly same gestation and the same month as our boy and, despite having no apparent hearing problems, her little girl isn't talking either. I wonder if they'd consider joint therapy sessions!

[Chris Campbell]

very unusaual not to have heard back from them - they are normally so prompt with things like that. Who did you send the note to?

You'd have to talk to them about joint sessions, but I would have thought it unlikely.

They have parents who travel to them from Scotland just for the sessions. They are only every two weeks and only during term time. They are wonderful, wonderful people and I can't recommend them highly enough. They have saved our little Alice and I don't say that lightly.

If finances are a worry, there is help and advice they can give on this.

[heike]

Sorry to jump in here, but we are under the Manchester Auditory Implant Centre as well - Lise Henderson won't be able to offer you any AV Therapy there unless your child gets implanted there (as it is NHS funded). To put your fears about their apparent lack of knowledge on ANSD at rest, Manchester actually have a large number of ANSD children on their books, they just all manifest differently and the NHS is ever so cautious about implanting ANSD children early (rightly or wrongly, it's a difficult call to make). If you are going down the implant route, they have pretty sophisticated electrophysiological pre-implant tests available, not many places in the UK currently do, and one of their consultants, Simon Freeman, has worked with Professor Gibson's team in Sydney. And there are Dr Munro and Dr Uus, on the research side at Manchester University, who have an interest in the condition (you won't get to see them, but I know that the clinical staff talk to them because kept on pestering Lise and Mr Freeman about a specific assessment that is currently only available via research labs in Sweden or the US). The only criticism I have of Manchester is that the assessment process dragged out for such a long time, i.e. appointments were widely spaced apart and no amount of pestering on my part could change that (to be fair though, they are a large implant centre and have a heavy caseload).

I had to bang my head against numerous brick walls (why doesn't anyone take us parents seriously?), but in the end my daughter Laura got implanted a month after her second birthday. We are 15 weeks into our CI journey and have no regrets about taking this decision on Laura's behalf.

The private AV therapists that I am aware of are Lyndsey Allen at the Ear Foundation in Nottingham, AV UK as mentioned by Chris and Claire, and then I believe there is a lady in Hampshire and one at Christopher Place in London. We went to AV UK for quite some time before Laura was implanted to try and figure out what her auditory system was actually capable of - not very much and that became clear very quickly (still, I don't regret trying AV pre-implant against the explicit advice of our Teacher of the Deaf and local doctors, who said we absolutely had to sign. Signing wasn't for us for a number of reasons (I would have accepted Cued Speech as a Plan B, but up here they didn't even know what that was), but I believe that every family has to do what they feel is best for them, AV isn't for everyone.

A note to Chris and Claire, you ought to be very proud of yourselves and your adorable children. You have accomplished in just over 2 years what many people at the beginning of their journey with ANSD can only dream of. I have only recently read Alice's story from beginning to current day, but it is a very moving account indeed (I actually remember noticing her lovely smile on the picture wall at AV UK, unaware of who she was).

[Chris Campbell]

I think we are both very lucky and also very bossy. We too suffered from the 'wait and see' attitude to ANSD, but by virtue of bulldozing the process along, we managed to get where we are today.

It's one of the things Kai Uus was talking about at the Ear Foundation last week (when Claire gave her talk on ANSD from a parents perspective) - ANSD, as we know, is a whole host of different conditions, true neuropathy, hair cell dys-syncrony, inner hair cell absence etc. etc. It can, as we know, also be maturational.

The trick is to try to 'diagnose' the underlying problem and treat it with an agreed protocol. This doesn't exist in the UK as yet.

[heike]

In theory, the NHS have the framework of a recommended protocol that they should use in the assessment of ANSD. It's always had massive holes from a stressed parent's perspective, but it's better than nothing as it does recommend a multi-disciplinary approach (audiology, genetics, neurology, ophthalmology etc.) - our local hospital initially tried to hide behind the "wait-and-see" element before I started quoting the document back at them .... after all, what good is "wait and see" if the underlying cause is genetic etc. The NHS takes a completely different approach to say the Germans or the Swedish, i.e. curative at last possible moment rather than being investigative and proactively covering the different angles (no offence to any decent NHS professional intended). "Pester, be tenacious, and you will get in the end" worked for us, too, but it shouldn't have to be like that in a civilised country.

Going back to the AV therapy approach that this thread started on, it's the most positive aspect of our journey with ANSD so far. You have to lose your inhibitions about moo-ing, quack-ing and going up-up-up the steps in public, and that took me some practice, but it works, anytime and anywhere without too much resource at hand. Hopefully it will become more widely accessible across the UK, I still remember our 7 1/2-hour down to Oxford and back in the very early days, it wasn't fun.

[Chris Campbell]

yowzers - that's tough, but isn't it worth it! I too remember the odd looks in shops as I talked about everything over and over to Alice.......proof of the pudding and all that. Claire is now a Trustee at AV.

As for the protocols, I am still amazed that one of the county's leading experts (who shall remain nameless) suggested to us (and at least one other family that I know of) that we jump on a plane to Sydney to get an EEABR test. I understand GOSH are now doing this as a predictor of CI outcome, but back then.........I don't really criticise the Audiologist who said it, more the face that the only place to get the test done was in Sydney. And the genetic testing can still only be done in France or the US..........good old NHS......

[heike]

The world is a strange place, indeed (poor old NHS, you need a bit of a work-out). EABR/ECochG are also available via the Manchester Auditory Implant Centre.

I remember the days when I kept on playing the Euromillions, hoping that I'd be able to afford my own dedicated AV therapist and trips to Sydney, Florida and Colorado to see THE specialists ... but it looks like we are on our own now, never mind, we intend to get there! We'll be playing "Where are you, ball etc.?" when Madame wakes up from her beauty sleep ... I am sure you know it well, simple but soooooooooooooo effective!

I am certainly spreading the message about the AV approach here in the Northern "wilderness"!

[Chris Campbell]

I bet you find you say "Good Job" an awful lot too....

[heike]

To quote my 4-year-old: "Mum, if you say 'good job' one more time, you will not get any Christmas presents!

I'll be mummy-no-mates this year then, it'll be worth it in the end.

[marleysgirl]

Quick response as I have to go to work in a bit!

Just attended Andrew's first Audiology Review meeting, and I brought up that I'd been looking into AV. Turns out that his audiologist does work closely with Lise, and she's going to try to get us a referral for at least an introductory session, so that the basics can be explained to us. Also, there is a member of the local Sensory Support Team who is learning AV therapy, and our ToD is going to see if she will work either with the ToD or Andrew to pass on some of the skills.

[heike]

That sounds encouraging, good luck.

[kgb]

I think it's important to note that AVTherapy can work well if speech discrimination isn't severely affected (which it can be in some patients with ANSD). For many children who go ahead with a CI speech discrimination problems become less of an issue because the implant can "by-pass" the parts of the hearing pathway causing distortion. For this reason AVTherapy can work very well with a CI.

However, when the hearing nerve hasn't developed properly the signal through the CI may still not be complete and the baby/child may struggle trying to understand speech without being access to visual cues. It's important to have an MRI scan ahead of time to see if there are any warning signs that this may be a problem

For those children who have more hearing on an audio gram and are working with hearing aids you need to be on the look out for problems understanding speech unless you are facing them. This doesn't happen for all babies/children with ANSD but you can imagine that if everything they hear is distorted it will be very difficult for them to learn language through listening alone. This means that the AVTherapy approach may not be effective and you could find yourself with a very frustrated child with delayed language.

I think it's good to start with the approach that for every 3 months of consistent early intervention there should be 3 months progress in speech & language development. If delays are becoming evident it's worth considering a cochlear implant even if there is only a moderate hearing loss on the audio gram. We are seeing some lovely results with children in this category in Australia which is accompanied by a noticeable decrease in frustration about the inability to communicate effectively. We suspect that in these cases the cochlear is creating distortion which can be by-passed with an implant.

Not all babies/children fit into this group so I don't want to give the impression that cochlear implants are needed for all babies/children with ANSD. I guess the message is to monitor your child's progress and work closely with your early intervention specialist and audiologist to try to establish whether distortion of speech is a major problem for your child.

In the US cued speech is used to help overcome understanding speech when it is distorted. Whatever the child is unable to make out when listening they can make up for by watching hand-cues that represent different speech sounds.