RIVEN! Or anyone with LO with, or experience of VI please?

[feelingbetter]

Warning long and rambling post ahead.

Saw DSs eye Doc today. Got quite a thorough exam but no VEP (to be done next week with EEG). He is presenting, yet again, as a bit of a mystery. I have always believed that he could see something and his Dr seems to agree, but he appears VERY variable. After 2 hours we were left with the (not so) news of 'likely to have significant VI'. No kidding.

Exam showed eyes good but longsighted and optic nerve looks fine. He appeared to fix on and smile at quite a small object, but could not follow it. Could fix on light and track it slightly before losing it, and a 'movement test' showed a normal response, indicating that something is getting to the brain and being processed. He also has nystagmus (which we were aware of) and tries to 'protect/defend' (their words, not mine) his eyes by looking VERY downwards, or VERY upwards (if that makes sense) when (over?)stimulated. There is also the suspicion that he can 'see' quite a lot more than we think, but is not able to move his eyes/head appropriately. On a good day when we can get him to track a toy, there is a delay in his eye movement, like he realises its gone, then needs to find it again (which he does - eventually!)

So, we have to wait and see some more. Dr doesn't think we'll get anything like a clear picture of his vision till he is at least 2, when the nerves are myelinated. Makes complete sense I know, but it is very frustrating.

Now, my questions are:
Does this sound familiar at all to anyone?
Is it possible that they can do anything to help him?
I know that even with severe CVI, it is possible to keep stimulating vision and that it is sometimes possible to differentiate colours and shapes etc (visually, I mean - don't know where DS will be intellectually) so what type of things did you find useful? We have done quite a lot already and we have his paed eye doc coming to see him soon with some more ideas.

I know none of you know DS and none of you (I think) can see into the future, but I would like to hear your experiences and outcomes (good and 'bad'). We are not at all in denial - there is something very obviously wrong, so I won't be frightened by anything.

Thanks for reading this long and waffly post - again I feel like I have more questions than answers.

prolly not the best person to answer you but dd does probs with her eyes and has reviews at eye hospital every couple of months.

She got glasses at 9 / 10 months of age. Has owt like then been mentioned re long sightedness? My dd is v short sighted in one eye. We started patching for squint at 18 mths and didn't need to do it for long.

Yeah - I found and still find those books aimed at little babies - black and white contrasty patterny ones good. Also had a mobile like that (you can have this now if you want. Tis one of those 'infastim' things and has faces / shapes on black and white and colour cards)

She had nystagmus. It went away for a couple of years but has come back recently. Dunno why.

Wheeel...

DD1 has/had a bunch of visual issues but all small. It's a bit hard to work out what she can see in the end tbh and I don't know how it compares. I'll describe and see if it helps...

To start with, she had DVM (delayed visual maturation). She apparently didn't see much at all for the first few months. She smiled a bit late and only smiled at lights on the ceiling, never at us. She wasn't interested in mobiles or whatever at this stage. At about 3m she got to the GOSH eye guys, who over time confirmed the DVM, and told us she also had Saccadic Initiation Failure (couldn't glance right) had right field mostly missing (from VEP) & some acuity problems. Faint cataracts, lazy left eye (patched for 2 years, that was hell), needs glasses though she eats them, one side more than the other. (One side needs glasses more than the other I mean, she eats both sides equally)

Experience has since shown that she has issues with her mental map of the world (can't "learn" the location of a rug so will trip over the same rug in the same place several times a day for a year or more before starting to avoid it), can't see very far (doesn't recognise faces on the other side of the room) and isn't interested in things outside of her current field of view - we've got a dog and she blanks him because he is shorter than her. Toys at ground level are ignored. Bright colours and contrasts are far more likely to be seen than subtle ones.

However, the SIF cleared up very early on. Although the right field is still dodgy, she seems to have compensated by moving her head in such a way that she "scans" the area and builds up a full picture. Her tracking is OK. She is seeing further and further so I think her visual processing is improving. I'm never quite sure what she can and can't see (she has a severe learning disability as well and can't communicate) but I am sure that it is more than she used to see. In the last year (she's nearly 5) she's started to be interested in TV and I have to say it has done wonders for her vision. She likes high-contrast yellow background shows like The Tweenies and Lazytown: they have made her focus on an object for long stretches of time and I'm sure the only reason we don't have to patch any more is because of the telly.

We got the wimmer-stim mobile to start with, maybe the same one as ejb? As she got older, we started playing with toys on a white table or a black cloth for max contrast.

yeah that's the one. You can have it if you like fb - will post to you CAT me or mail [email protected]

Thank you ejb that is very kind of you, but we also already have that one. And a black and white fabric book in his cot. And a black & white play mat like this which is ace.
We also have lots of different lights for him and a sensory box type thing (which I made ).

r3dh3d it has also been assumed since very early on that DS has DVM. His neonatologist was convinced he was totally blind at first - it took about 3-4 months for others to see what we could i.e. that his visual awareness was increasing. All the more reason to wait and see, I suppose. I just want to make sure we are doing all we can in the meantime.
Thanks xx

Yes Cardiff. I have made him a vision box after you showed me some of DDs pics and I saw hers! Its full of cheap crap too, but he seems to like it

FB there are apparnelty techniques to impprove VI but ds1's VI (fairly minor, 50% like my own) isn't severe enough as largely remedied by glasses. Somewhere like BIBIC or similar would be worth approaching about it? (I know Riven liked brainwave, we liked BIBIC- it's where you feel at home I think).

Sounds very like my DD She is the same age I think as your DS.

She hasnt had her eyes tested they are waiting till she is 1 then a consultant in Vision is going to see her and she will be addmitted to a Vision Therapy Centre which is near us. We have had a VT for the last couple of months and we have had some very good advise from her.

My DDs eyes roll when she looses consentration and she has a phobia of fluresent lights which they think is from NNU. So places like Tesco used to set her off.

She seems to focus on things but when they are out of her vision doesnt bother to try and find them. Her movements arent great so we dont know if she is hitting toys on her gym because she see them or she is using another sense.

She turns to lights and I think she follows but not in the conventional way, its very broken with sections of blinking and head adjusting.

She has very minimal facial expression, we can tell different expression and her SALT can tell(its like watching a super botoxed person smile IYKWIM) so its very hard for us to tell.

We have been given quite a few lights from the VT and were advised that the survival blankets are great for Vision and hightening other senses(the tin foil looking ones)

Also things like light catchers are hanging from dds chair, along with mini disco ball Xmas decs. We have the calydascope light projectors out of Argos and she seems to pick up on them very well.

But Im only her mum and sometimes I think its just me that is hoping she is seeing, though other people including some of the HPs agree.

Sorry if garbled im usless at putting things down.

"But Im only her mum and sometimes I think its just me that is hoping she is seeing, though other people including some of the HPs agree."
josey that's exactly how it was/is for us.
DS has a smashing smile and is quite good with facial expressions, otherwise he sounds very like your DD and the things you are doing, we have done too. The kaleidoscope light from Argos is a big hit with DS (and me!) too. I'm sure I can't be imagining it.

By coincidence, his paed eye doc came to see us today too. Stayed for 2 hours and was really good (I think) tho she did struggle with his sheer size (think she was about 4 foot). She gave us lots of tips on cheap things to buy. Gabe was very taken with a shiny bottle type gift bag and was completely beside himself with joy when she put a bell strap around his wrist. Have never seen such an instant reaction. He even held it and tried to chew it (tho he ws very hungry after a demanding day). She also told us to put his (numerous) noisy toys by his feet with his socks off, just as another source of stimulation.

We have sent details to BIBIC and will have a look at SENSE too. You can never have too much help and info, can you?

Riven I hope to be over quite shortly as I return to work soon (well, March, but it feels soon). Hoping to see Clarissimo V soon too.
Whos' Maggie Woodhouse? Can I contact her myself?

Thank you everyone for responding xx

If any of the kids like the lights and that sort of thing do remember DH can get them at trade privces and will happily do so for anyone on the SN boards (has a small DJ lighting shop on ebay)

My dd has cvi and a lot of this sounds very similar, hope you don't mind me butting in. I referred her to the sensory team via social services which was helpful they had lots of info and ideas, and the vi teacher through portage who was really good and dd reacted much better to her than most people, she gave her much longer than I had been doing to notice and track and she responded well. I've read some stuff about cvi and one of the big things was how varied the levels of vision can be, in familiar surroundings and looking at familiar thinghs it's much easier, my dd shuts down if there's too much else going on. We have good days and bad days but she is definitely improving xxx

My DD is much better at home also and with people she is used to. When she goes to the hospital or the pead she cant cope and lets all eye control go.

The Therapists that were coming to the house would see her with the pead also and back up my claims re vision at home. DD is now getting used to going to the pead and she sees the change in her eyes.

She has also just got her 1st tumble form and her eyes are much more in control sitting in it...so it seems that her fight to control her vision is aided by the fact she isnt working so hard supporting herself...does that makes sense or Im I making it up for myself?

i taught visually impaired pupils in my last job and part of my role was assessing pupils with multiple disabilities and visual impaairment. my bible at the time was "Vision for Doing" by Marainna Buultjens and Stuart Aitken.

i'm not sure if it's still in print but you can make a copy from this site. it doesn't look like much, but if you click on all the links, it should give you all the information that is in the original book.

it pretty much gives you a programme to follow, from Becoming Aware of visual stimuli, through Beginning to Attend, Localising, to Recognising and Understanding stimuli, depending on the child.

if your ds is showing some response to light, then section 9 might have some ideas for you to work on with him. i'm afraid in this format it does look a bit dry, but it really does have some useful ideas! hope there is something of interest there for you.

I've got nystagmus, optic atrophy, restricted visual fields, can't read distances well, and used to have a squint (surgically corrected almost 5 years ago). I'm a happy and (almost) content 19 year old now. The only pain in the neck is I can't drive, but honestly, once the dr's know what's going on, they can help, and things can and do get better.

Thanks Riven, sometimes I think I just imagine things or are hoping this are there that arent. After the awful consultant appointment where he kept saying my DD should be dead I have lost a lot of confidence in my own judgement

Lollipop thats really good news, delighted for you that things worked out well.

I think really for a lot of us we are hoping we can incourage our LO's brains to re route the brain, if only there was an op to cure brain damage

Thankfully its not her general consultant....this was from her 6month NNU outpatient.....I told her usual consult and she went and strung this bloke by the Balls She things DD is doing well and really listens to what I say, she is please with Olivias movements, this morning she almost rolled all the way from back to front

Can I ask how do you know all the areas which have gone is it from a recent MRI or innital one? also I have seen you speak about coconut milk when did you start using this would my DD be too young yet?

It is amazing what they can do now, sometimes I wish they could work out a way to transplant the bits that were damaged with some kind of chip, after all we are a bit like computers arent we.

A neighbour of mine took his god son to the Peto institute years ago and said the results were amazing.