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Visually impaired baby - Not sure if that is all it is!!

9 replies

Lakette · 08/02/2006 19:05

I know I am a first time mum and every body keeps telling me that I am just being paranoid, but my dd is still not focusing on anything (she is 16 weeks) and the eye consultant has told us he does have concerns over her vision
We are being sent for tests and I have also asked to see a neurological paediatrician because I am convinced that it is more than just her eyes - She cries constantly (especially when other babies do or loud noises) and is just not developing at the same rate (ie cant lift her head). As I say everyone keeps saying it is because of her eyes but I am convinced it is something else - Does anyone have any experience with blind/visually impaired babies and their development??

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getbakainyourjimjams · 08/02/2006 20:17

I don't have any experience, but I'm pleased you have asked to be referred on as it's horrible thinking there;s something wrong and not having anywhere to go. Can she track a moving object?

One set of people you could talk to is BIBIC whilst you are waiting to see the neurologist (or anyway)- they have lots of experience of developmental problems and are big into things like visual tracking. They set you up with a home programme. They're not free but they heavily subsidise the assessments, and they will help you fundraise for the fees if you can't afford them.

link{http://www.bibic.org.uk\BIBIC here} They have a lovely sensory room (I could have taken up residence in there).

Lots of useful links {http://www.westengland.devon.sch.uk/pages/useful_links.htm\here as well- west England school for the blind}

getbakainyourjimjams · 08/02/2006 20:18

try again

BIBIC here

west of england school for the blind

dizzy34 · 09/02/2006 17:04

Hiya,

My little ds is reg blind (although he can see something). I can comment much on development cos ds is severly disabled but i understand your frustration.Have you spoke to your health visiter? Mine was really helpful. DS is also not good with loud noises, his hearing is very sharp and he tends to jump. We got ds seen to more quickly because he was having seizures and we just went to a&e but his actual eyesight wasnt assessed for the first year. HV should pick it up though

Lakette · 10/02/2006 17:42

That's exactly like her . She really jumps as soon as there is a loud noise or if somebody suddenly touches her - Its as though she is in her own little world
When you say that your ds can see a little, do you know how much that is? I am also convinced that she can see a little bit because she seems to really focus on black and white contrasts and sometimes it seems as though she is staring straight at me!!
Have asked my HV but altho she seems really nice she also seems really busy and doesnt really seem to have any particular advice - Is there a support group that you have been in touch with?

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wannaBe1974 · 13/02/2006 16:21

Lakette I don't have experience of visually impaired babies as such but I do have a lot of experience of the visually impaired because i have been blind since birth.

There is no evidence to suggest that VI children develop at any different rate to sighted ones, but sometimes development needs to be assisted in different ways than with a sighted child. A baby will often lift its head up because it wants to look at something, or crawl because it wants to get to something, if the visual stimulation isn't there, then that needs to be replaced by an audible one. Try and hold a mirror near to your baby's face and see if she responds at all, try doing this without making any noise so as not to alert your baby to what you are doing. if she does not respond then rattle a bunch of keys close to her and see how she responds to that, not too loudly of course if she is hypersensative to noise.

The reason why your DD seems to be in a world of her own and jumps if someone touches her may purely be because she can't see them, if someone walks up behind you and touches you when you're not expecting it, it would give you a fright, for your DD this may be exactly the same, she doesn't know where you are and so when you touch her unexpectedly it will frighten her. As she gets older she will learn to deal with this in different ways, perception is a great thing, but in the meantime it might be a good idea to talk to your DD constantly, especially when approaching her, that way she will at least know you're near her and won't get a fright when you touch her.

Sometimes diagnosing visual impairment is difficult, especially if a child has some vision, even light perception. I have light perception and would turn my head to the window when placed near it, would look at white objects because the light reflects on them, but I have no further vision, but as a result it was 3 months before I was diagnosed as being blind.

This will not be the end of your world, if visual impairment is all your DD has, then she will go on to lead a normal and fulfilled life. Don't treat her any differently, let her do the things she wants to do, (I rode a bike and had rollerscates etc when I was a child), she will thank you for allowing her to be independent.

I am 32 now (well will be on Friday) I am married, I am a SAHM and have a 3 year old DS and am TTC for baby no 2, before having a baby I worked as a finance manager, before that as a customer adviser, and also as a secretary. I am totally independent and there is nothing I cannot do, (well apart from drive a car but that's not the end of the world).

If you need any advice, and I don't profess to know averything but I will always try to help, then feel free to cat me or email me at [email protected]

sorry for long reply, good luck

WestCountryLass · 13/02/2006 23:07

My DS has nystagmus which is a sight condition, this was diagnosed when he was 9 months old. He was attanding prem baby clinic and Consultant picked it up at 7 months, he was referred to Eye Hospital and appointment was within 6 weeks. With ref to Neurological v Visual disorder, my DS had to have EEG and other tests to confirm the nature of his condition so you are right to consider neurological issues (in my DSs case was not neuro).

To be honest, I never really discussed my DSs condition with my HV as she was a bit useless and was not trained in this area. If you contant RNIB they might have more info for you?

I hope you get a diagnosis soon, hang on in there!

dizzy34 · 14/02/2006 08:43

Hi,sorry for the delay in getting back to you. DSs condition was neurological as he has a rare form of epilepsy. we think he can see some things because he does seem to focus at times. My health visiter was really nice and supportive of me and although she doesnt have any direct knowledge of ds condition or his visual impairment (but then again neither do most GPs i meet), she was willing to learn about it. I mentioned the HV because if you suspect a problem with develepment as well as vision she can refer you quickly. The national blind childrens society sent me a lot of information and actually fundraised for ds to buy him fibre optics and projecters etc.

Piffle · 14/02/2006 09:12

West Country Lass my dd has nystagmus too, it was not dx'd until the last year (she is 3)
It may be that Lakette, your dd has some muscle tone problems too? My dd was late like this as well and very petite
You know what you know as a mother and it is hard to 2nd guess, but a paed referral is a good start, as is early intervention and therapy

Lakette · 16/02/2006 16:37

Well she had her EEG on Tuesday which was a little bit traumatic for all three of us - Not very nice seeing your baby with lots of wires coming out of her head - She coped really well with it though and only started to get really cheesed off towards the end (didnt help that it was about 100 degrees in the room)
We have got the appointment to see the paed in about a week or so but she is now lifting her head quite a bit and today I am feeling very positive and think that there is nothing else wrong with her (obviously tomorrow will be a different day!!)
I think the most frustrating thing is that the consultant has still said that she could have Delayed Visual Maturation and her sight could kick in any day - This means literally every day I wake up expectantly and then get disappointed each time - I think if we could be diagnosed then I could get on with dealing with her condition
Anyway thanks for your messages and will let you know what the paed says!

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