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DVM - Delayed Vision Maturation - anyone with advice or experience PLEASE!!!!

10 replies

sleeplessmumof2 · 02/10/2004 10:37

mY 7 week old ds2 has just been 'diagnosed' with DVM just completed the electrical vision and brain pathway tests at GOSH and everything seems to be ok so the label for the time being is DVM.

Im quietly going a bit mad and would welcome anyones personal experiences, good and bad in this area as right now im not sure what i think or feel?? Thanks

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chonky · 02/10/2004 13:54

Hi sleeplessmumof2 - my dd has DVM. She is now 5months & her vision is getting better over time. Have to dash out now, but will be back later (promise to write more later). Feel free to CAT me if you want.

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chonky · 02/10/2004 17:37

Hi, am back (just been to check out our new house - very exciting as we've been in a rented flat for ages!

DD's story is as follows. At 7 weeks I took dd to her 6 week check & raised concerns that her eyes didn't appear to be tracking or focusing. She was also very unresponsive and uninterested in the world around her, & seemed to have NO concept of day or night. GP seemed not bothered, so I took her home again thinking things would be OK. I took her back the following week as things were definitely not OK, she was still not tracking/focusing. We then got referred to Brums' CH, where we underwent EEGs, MRI, VEPs, bloods etc. Turns out she also has partial agenesis of the corpus callosum (the sandwich layer between the two brain hemispheres didn't grow properly), although they think that this is fairly mild.
Fast forward to 5.5 mths. She's very chirpy, and now tracks objects reasonably well. She still has few fine motor skills, not too sure whether this is related to the delay in getting vision or her hypotonia/ poss. learning difficulties (these would be related to her corpus callosum problem, not DVM). However, it's early days, as she didn't have any vision until 3.5 months. I can say that things have improved greatly for her over the past couple of months, and although very behind she is blossoming. We're still waiting to see whether there's any long term visual impairment - but I am very buoyed (??) by the fact that she has some vision now.

From a diagnosis perspecive I found it quite tough as I searched desperately for someone else who had had a child who had DVM, and could find no-one.

A family friend who's a paed bought us this:

see this

which I found helpful. We are also getting a teacher for the visually impaired to come out to dd this week. We had to wait 4 months to see her, so maybe worth asking about this if it hasn't been offered already.

HTH

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Davros · 03/10/2004 09:24

I've got a friend whose son, I think, had or has this. He's 10 now and has improved massively. I'll ask her if its the same thing and any advice this week.

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chonky · 03/10/2004 10:38

Thanks Davros - I'd be really keen to hear from anyone else with experience of DVM.

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sleeplessmumof2 · 04/10/2004 19:41

Hi chonky so good to hear that youve made such good progress already. Im literally just trying to get to the bottom of all this and to allow a bit of time for it all to settle down ive been told to keep stimulatingwh ich i am doing did you find that your little one preferred black and white and primary colours or bright vivid colours and did you find that distances were important?

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heartinthecountry · 04/10/2004 21:12

This is a bit of an aside, and sorry not about DVM, but chonky just wanted to ask if you have come across Corpal - it's a support group for children with agnesis of the corpus collosum. I know of it as my dd has ACC (or partial agnesis we are not 100% sure) as part of her syndrome.

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chonky · 04/10/2004 22:37

Hi sleeplessmumof2. We found that dd liked black, white & red best when her vision did the 'switch on'. She could only manage to see stuff about 20cm away. It seems that from 3.5 months it's as if her vision is the same as that of a newborn, and she's going up the same visual learning curve now.
The teacher for the VI came out today. She's suggested that we start to encourage dd to track from a distance by gradually moving an object further away from her & then trying to get her to track it. Likewise, she suggested that instead of getting dd to locate an object before she has to track it, get her to fix on it first & then start the tracking i.e put it in front of her face to begin with. She also suggested lots of different textures so that dd doesn't get tactile defensiveness from where she has missed out on the first few months of exploration (this is where kids refuse to touch certain surfaces later on in life as they don't like the feel of it). So tonight she had her paws in spaghetti & shaving foam, and tomorrow night it's jelly Your babe's a bit young for that stuff yet I guess. We're also starting the Oregon Programme through her, apparently it's a bit like Portage, but apart from that I can't tell you any more yet as we start next month.

Hi HITC. I haven't joined Corpal yet, would you recommend it?
I've been meaning to join for ages but I am pretty pants at personal admin.
I am part of a US-based ACC webring, but to be honest find it a bit depressing as everyone seems to be focused on what their sprog can't do yet. Think I'll unsubscribe. I would like to get to know other Brit-based parents with kids with ACC, as long as it's a postive look at the problem IYKWIM.

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sleeplessmumof2 · 07/10/2004 09:05

Chonky you sound so organised and focused well done!!! Sorry to be so ignorant but what is the oregon programme and portage??? and how did she get on with the shaving foam and spaghetti?

My ds 1 had some real difficulties with feeding and we had a speech therapist that encouraged loads of experimentation like that to get him to try to eat different textures, quavers, hundreds and thousands etc it was fun at the time i remember

How did you get hold of the teacher for the VI? and if you dont mind me digging can you tell me at what age you began to see the first signs of focus and tracking.

If you would rather CAT me please feel free

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chonky · 07/10/2004 11:10

Not organised AT ALL (I wish!!!)

I'll CAT you later (once dh has arrived home to keep an eye on the monkey)......

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Ruth86 · 18/06/2019 10:20

Hi there

My son is 12 weeks and has been diagnosed with delayed visual maturation. He is just about starting to fix and follow when he wants to bu still appears unresponsive to faces in front of him even when st the same distance as the toy he is looking at....
Has anyone got any experience of how this condition improves or at what rate? Or did the DVM cause delays in other areas temporarily?
He also seems to have stopped liking to lift his head on tummy time but has got good head control...
I am just so worried it is more than just 'seeing'.
Thanks

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