Back from BIBIC

[mm22bys]

Hi, we're back from our first assessment at BIBIC. It went really well. We saw two therapists for his assessment and program, an SALT, and a dr. All very professional and encouraging. It was enlightening too, as we found out how poor DS2's hearing and vision are. We have known for a long time that he has Delayed Visual Maturation, but did not know how poor it still is (at 0 - 3 month old level), and his hearing is virtually non-existant. He is due to have an ABR on Thursday, and we hope to get some useful information as to the best next course of action for his ears (grommets or aids).

We have to work a lot on stimulating his vision (24 times a day), and lots of other sensory exercises (massages etc).

They gave a similar assessment to the disastrous NHS one he had a month ago, but were much more positive and encouraging.

The proof will be in the pudding. I am going to start the program properly tomorrow, and we'll go back there in about 5 months to see if there's any progress.

Still no definite word as to an "official" diagnosis, but we knew they wouldn't be able to actually diagnose anything.

I feel like we at least have a plan of action now (sadly NHS therapies virtually non-existant....)

[needmorecoffee]

Glad it went well. We're off to Brainwave oursleves (cheapetr than BIBIC) but would like to do both.

[mm22bys]

Thanks. What / where is Brainwave? I haven't heard of it - I only found BIBIC after looking at the American Institute for the Achievements of Human Potential, who had a link to the Aussie IAHP, who had a link to BIBIC (but I had also seen it referred to here).

When are you going?

All the best,

[needmorecoffee]

Brainwave is in the same town as Bibic. Weird or what!
We're going Jan 6th. trying to find some way of not having to take my 14 yo and 12 yo but can't find anyone to come and teen-sit.

[TotalChaos]

glad you found it useful, I know a fair few MNetters have been there and all seem to have been very pleased with the info/exercises provided.

[Blossomhill]

It's fab isn't it. We have only recently got back (2nd time) and loved it. We had a man with initial G as our therapist and he was brilliant

[mm22bys]

I know who you mean, we had a therapist whose name starts with P.

We found out today that he is profoundly deaf in his left ear. His right ear can hear down to 25 / 30 decibels but only at higher frequencies. He had a mould taken for a hearing aid for his right ear, they said there is no point doing anything for his left ear.

They confirmed glue ear and recommended grommets. We will have to wait a long time on NHS so are investigating cost of doing it privately at GOS. Anyone have any idea of the costs? They said £400 for the grommets, and £1000 for the hospital costs, and I guess there would also be consultant costs on top. So we are thinking it would cost at least £2000.

If he was "just" deaf we would probably think it's the end of the world, but he also has visual problems and motor problems, so we are thinking there must be a neurological cause...people keep on saying our DS2 is a "mystery".

Can you stimulate the auditory nerve so it "starts" hearing? We are doing visual stimulation, is there something similar for hearing?

So many questions, so few answers...

[nickToD]

Does he have nerve deafness (sensori neural)? or is his deafness more to do with glue ear? Have they told you how much of his hearing loss is down to the glue ear? If his hearing is more sensori neural he may be elligible for a cochlear implant. Have they said anything about this?

[mm22bys]

Hi,

no, they don't know the exact cause of his deafness. They said that they need to conduct further tests - Bone Conduction, I think, to see further where / what is causing the problem. So we don't have all the information yet. When he has the grommets put in they will do the Bone Conduction test. He was asleep for about 1.5 hours today while they did the ABR, and I think they were quite happy with the amount of information they were able to obtain, but it seems the puzzle has not quite been completed yet.

They didn't mention cochlear implants. They did say they wouldn't put an aid in his left ear because the difference in sound quality would confuse him. I don't know if that means forever though - he is still only 11 months old.

When we were at BIBIC the therapist did talk about children who were about to have cochlear implants, and she said that they would destroy any residual hearing they did have, and that they did start to hear..so were able to avoide the CI. I don't know how deaf they were, or what the cause of the hearing impairment was.

I thought about asking about the implants, but didn't get round to it.

He will have the right aid fitted in about 10 days, so that is good, and while we don't expect smooth sailing while he gets used to it, hopefully it will help him. He doesn't respond to "normal" sounds at all at the moment....(he does respond to loud noises but that is it..)

[nickToD]

Sounds like there is some hearing that is worth aiding and that with grommets he may hear more. Another option for kids with serious conductive losses are bone conduction aids which by pass the middle ear. One boy I work with who had a profound conductive hearing loss ( not nerve deafness) has one and the results have been astonishing. Might be another option for your son( if the standard hearing aids + grommets don't work.(These are known as BAHAs)Very best of luck with the hearing aids.

[mm22bys]

Thanks MicktoD. Given all his other issues we think his hearing problem is probably neurological and not "just" conductive, but we don't know this for certain so will try to find out more and ask about BAHA.

Thx, we hope it will help him. He saw am SALT on Monday who said he is making the sounds just before babbling (and has been for a while) so hopefully the grommets / aid will "unstick" him and he will develop some more.

[mm22bys]

sorry typing one handed at 12.30am while holding DS2 and of course that should have been nicktoD!

[staryeyed]

We must have arrived as you left mm22bys. Have just got back ourselves.