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Baby's vision

6 replies

Nkd19 · 02/02/2020 17:25

Hi everyone,
Just wondering if someone can give me any advice on optic nerve hypoplasia.

My 9 month old daughter has seen a consultant as we were worried about her not focusing faces and not looking when called. The consultant didn't give a diagnosis as such but said the optic nerve looked "featureless ". We were told she needed an MRI to check her brain development and an electrodiagnostic test to assess her vision. Obviously we have been out of our minds with worry since and seem to be getting nowhere in getting these tests booked.
We are praying that her MRI will be fine. Her development in general is fine, which is why we never noticed any problems before. She is crawling, standing up all the time, crawls to toys and plays with them as she should.
They said her vision is (or should be) fine but there is obviously something wrong!
Does anyone have any experience of this? Would appreciate any advice please.

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Are your children’s vaccines up to date?
LouMumsnet · 06/02/2020 17:24

Hello, @Nkd19 - just bobbing on here to let you know that we've shifted this over to the Children's Health topic - hopefully someone will be along soon with advice. Best of luck. Flowers

underneaththeash · 09/02/2020 20:15

The best advice I could give you if you're struggling to get the tests you need booked is to contact PALS at the hospital to help you.

Babies in general have pretty awful vision and the rate that it improves at varies immensely - some take much longer for the visual system to mature than others. But at 9 months all babies have much, much less good vision that children a couple of years older than them.

She may have optic nerve hypoplasia, but all that means is that the area where the fibres containing the information from what she sees, which then travel to the brain, is not formed as well as it could be. People who have that condition can sometimes have near normal vision or can have fairly poor vision, it varies.

It could also be that she's very longsighted, the optic discs/nerves of longsighted people often look very flat too.

I'd concentrate on getting the tests that you need done, the fact that her development is fine and also that she hasn't got a strabismus (squint/turn in the eye) or nystagmus (wobbly eyes) is very positive and it may turn out to be nothing to worry about.

I'd also concentrate on her visual stimulation - mammalian eyes only develop with stimulus and at 9 months her best focus is still fairly close to her. Make sure she's not in sling, lots of picture books, colours and textures are ideal.

BabaganooToo · 05/10/2023 16:09

Hi, I realise this is a super old thread and it’s unlikely you’ll respond but my 14 month old has optic nerve hypoplasia and I was wondering how your little girl got on as she grew up ?

Nkd19 · 05/10/2023 19:36

Hi BabaganooToo!
It turned out my daughter did have a serious eye condition which means she will progressivley lose her vision, but we don't know at which rate.
However, she is totally amazing! She is growing up to be clever, funny and kind which is all we could ask for. Of course things can be challenging at times but there is a lot of support out there if you know where to look. I have decided to home school her as that is currently what is the best thing for us.
Back when I first posted I didn't know how her life would be without vision. I was in a very bad place. It is still something that is always at the back of my mind as I'm sure it is for you, but I'm sure your child will be amazing, just like mine. Happy to answer any other questions you may have! 🙂

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BabaganooToo · 05/10/2023 21:15

Wow thank you so much for responding! I haven't yet been able to speak to anyone who's child has ONH so even just your response is amazing, thank you.

I know ONH can vary massively from child to child. Currently DS (14 months) has been diagnosed with ONH in both eyes, he also wears glasses for short sightedness. We've had blood tests done and thankfully his growth hormone and genetic composition have come back normal. We're awaiting an MRI which should've been last week but they've postponed until January. We've had a visual evoked response test - the results were insufficient but showed low rod and cone function (no one actually told me what that means...) but it'll be redone in the future I think.

His development seems on track. Walking at 13 months, babbling loads/saying some words now. But I've read so much around ONH that makes me really concerned for his future, which I'm sure you understand!

What condition does your daughter have? (If you don't mind me asking!). Is it the ONH that is causing the progressive loss of vision? When did you start getting more answers and knowledge about what was happening with her? I think it's the not knowing that is the hardest!

How do you find home schooling? How old is she now? Im so sorry I have so many questions! It feels like parents of those with these conditions are few and far between! Thank you so much again for your time.

Nkd19 · 05/10/2023 23:32

I've sent you a pm so we can chat a bit more. Even though it turned out my daughter didn't have ONH I hope I am still able to give you some information that may help in some way 😀

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