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delayed visual maturation and cp

19 replies

tashm · 03/11/2007 12:06

Hi. This is my first time posting but I have ready many of the messages and you all seem so supportive and helpful I have finally plucked up the courage to post. My dd will be four months tomorrow and has no vision. She has also been diagnosed with global development delay, being hypotonic and also query a movement disorder. We have been to Great Ormond Street , who were fantastic, and had the eye tests-VEP and ERG- and everything is working and they think it is delayed visual maturation. Does anyone have any experience of this- I love her to bits but am finding it so hard to keep positive and though she smiles a lot I just wish she would look at her mummy and daddy.
She was late in opening her eyes is this something that happens with developmental delay?
Deep down I am worried that she has cp and that she will never get her sight. She has had two MRIs now-the first was when she was in SCBU -she was admitted day after she was born as they were querying seisures and she was hypertonic. Both MRIs were fine but she did wobble on the second one. One of her consultants said that they can't shoe myelination but looking at some of these messages here you can??She was discharged after 11 days but we weren't given any support advice and just told watch for milestones so it has all been a huge shock for us.
She has a brain EEG on Monday and physio on Tuesday and will be seeing a neurologist at GOS on the 12 Nov. All metabolic tests and chrosome checks have drawn a blank. One consultant at our local hospital saw her a few weeks ago and wrote her off and said she must have damage to her basal ganglia and inferred she would be in a partial 'vegetative state' His words-we will be lodging a complaint. Now the MRI results have come back he has said she doesn't have this damage and has said the floppiness could be due to the delay or cp.Though he said she is not exibiting CP movements.She can lift her head from the floor, grasp things and is very strong and smiles at silly faces. I do think she is quite jerky in her movements but as she is first child am finding it difficult to know what is 'normal' or not. She has always seemed different to the other babies but this may be due to her blindness.
I love her so much but am just finding it a bit overwelming at times and her lack of sight has devastated us. Any advice would be greatly appreciated and sorry this is such a ramble and I hope I haven't offended anyone. Thank you x

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trace2 · 03/11/2007 12:26

hi tashm i dont want to leave this unanswered so am bumping for you!, but when i read your thread soundes very like my dd 20 weeks, but with out the eye problems, we have no idea whats wrong with my dd shes had mir and 2 eegs one abnornaml but all other tests are clear we also ws told dd is not showing any exibiting CP movements. but my dd finds it difficult to hold her head , and not reaching for things, and shes jerky in her movements too.

i feel for you (hugs)

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chonky · 03/11/2007 16:22

Hi tashm - welcome to the SN board.

Your post could have been me describing my dd a few years ago (she's now 3.5). She was diagnosed with delayed visual maturation, developmental delay and hypotonia (she has hypertone in some of her limbs). We still don't have a firm diagnosis for her.

She's doing really well - her vision has improved heaps, and she's healthy and robust (and very happy!). Feel free to CAT me if you want, more than happy to chat x

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needmorecoffee · 03/11/2007 16:31

My daughter has CP and cortical visual impairment which is slightly different. But we go toa vision group with kids with delayed maturation. Basically they start with a light in a darkenend room to encourgae the brain to see and develop the correct pathways. When the child can see a light then there's moving it and all sorts. Sense have a lot of info on this as do 'The Blind Children's Society'. My daughter , while still registered blind, can see now. It will never be well enough to drive a car (but given she is a total quadraplegic no worries there) but over 3 years sight has come.
That neurologist sounds like a total arse, especially as if there had been basal ganglia damage that leads to athetoid CP and the majority of kids with Athetoid CP are extremely bright.
No idea if your dd will turn out to have CP or not. It could be too early to tell.

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chonky · 03/11/2007 16:36

PS - my dd's diagnosis started as DVM, but is now changed to CVI. Either way, her vision's really improved.

Have you seen the team at The Wolfson Centre at GOSH? They're neurodevelopmental paeds who specialise in vision problems.

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needmorecoffee · 03/11/2007 16:40

Can anyone geta referral to The Wolfson Centre Chonky? I've been doing dd's vision therapy myself and she sees an opthamologist who keeps promising proper therapy but it never appears. I know CVI can keep improving with the right input.

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chonky · 03/11/2007 17:02

Not sure to be honest. Our paed neurologist referred us. It's well worth asking as they are very good, although you have to wait years (OK, exagerrating slightly) for an appointment.

Do either of you have access to a teacher for the VI (our local paed referred us to one)? Ours was really good - she'd come around to the house and do some visual therapy with dd.

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needmorecoffee · 03/11/2007 17:44

Yes we did Chonky and were promised 6 one to one sessions, one each month. 2 years on am still waiting for them despite complaining and bitching and carrying on.

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tashm · 03/11/2007 18:53

Thanks so,so much for your messages both of you- it makes me feel less alone in this and has given me much needed hope.So pleased your dd's sight has improved.
I have someone from the local education authority coming round next Friday-she works in the vision team but as she is a social worker I don't think she will know as much as teacher for the VI. I will give the developmental consultant my dd is under a ring on Monday-fortunately he is more helpful than one of the other consultants she is seeing. (she is under 4!)I will also ask the neurologist we will be seeing at GOS-we have high hopes about this appt!-about referring us to the Wolfson. Good idea-thank you.
Do either of you know anything about portage-do you use this service? I have gone onto their website but they don't seem to cover Essex where we live.
Will definitely CAT you needmorecoffee once I've worked out how to do it!
Thanks so much again for taking the time to reply xx

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2shoeswhizzbangwoosh · 03/11/2007 18:55

I just wanted to say hello and welcome to the sn board. I have a dd who is 12 and has cp. I don't know anything about VI though.

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Dropdeadfred · 03/11/2007 19:11

If you want to laugh at wedding dresses..check this out!!

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Dropdeadfred · 03/11/2007 19:11

God - I'm so sorry, wrong thread

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needmorecoffee · 03/11/2007 19:24

I don't have the CAT thingy Tashm but you can email me on [email protected]
We had portage for one year from age 1 to age 2. The woman came for an hour each month and played with dd (possibly ina proffessional way). The first 5 months were dd screaming her head off cos she hated strangers.
At the beginning the portgae lady did a checklist of development to which every answer was no. Stuff like 'can she raise her head?' 'Can she reach out?'. That sort of thing. At the end, the answer to all the physical stuff was still no but dd's understanding had improved hugely (down to me, not portage!). I took the sessions as a bit of a break from holding and entertaining dd to be honest.
If you email me I'll tell you the vision stuff I did - got it from people who'd been to the Institute for the Acheivement of Human Potential, in the US and from people on yahoo emaillists for VI kids.

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chonky · 03/11/2007 19:43

We used Portage too. I think it helped me as much as dd in terms of having someone to talk too about her progress and my worries about her. It's definitely worth investigating.

I've just thought, if you want my copy of this book you're more than welcome to it (it's produced by The Wolfson Centre):

show me what my friends can see

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mm22bys · 03/11/2007 20:41

Hi Tashm, so sorry to hear about all the worries and concerns you have, and the awful comments you have received from some consultants.

Your dd sounds similar to my DS, who started off with a dx of delayed visual maturation. He is almost one now, and his vision has improved, but he is "severely developmentally delayed". We don't have any other dx or description from any specialists we have seen, which makes researching what we need to do to help him hard (support from NHS has been dreadful but that's for another thread).

I hope you are able to get the answers you need. My DS is still very behind, but he can sit up now and he is reaching more. We hope in time he will "get there" - but only time will tell.

All the best,

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mm22bys · 03/11/2007 20:44

Needmorecoffee, I have read a lot of stuff on Glenn Doman. When DS1 was a baby we got how to teach your baby to read, and how to teach your baby to do math, and we think it's really helped him, and with all DS2's problems we have reread some of his stuff, and did look into actually going to Philadelphia to learn more about their approach. Have decided to try BIBIC's program for a while instead (seems like IAHP's program would be more than a full time job - like 13 hours a day in some cases).

Could I CAT you for your vision stuff?

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needmorecoffee · 04/11/2007 09:15

mm22bys - my email address is somewhere in this thread as I don't have the CAT thingy so feel free.
Are you going to go to BIBIC? If you do, we aren't that far away so you could drop by.
I'll also send you a photo of the 'small room' we made dd for visual stimulation.
Basically a black box about 2 foot square and we stuck shiny things and dangly shiny things and tinsel plus a small disco ball inside and lay her top half in it (dd can't sit). It means no visual clutter from the outside and everything is close up. I made her track things that light up (pound shops are fab for little toys that light or flash - although if your lad has hand function they aren't that safe. Just don't let go! I'd click things by one ear so she'd turn her head, wave bits of tinsel until she saw them and make her track them. Initially she was totally blind and saw torchlight first so thats where we started.
Had to do it myself as the vision team here is hopeless. Always very nice on the phone but nary a visit.

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tashm · 04/11/2007 15:09

Thanks everyone for all your supportive messages. Chonky are you able to scan over pages 58 onwards of the book,'show me what my friends can see' as these seem to be missing from a copy I was given. If not no worries and I'll order it from GOS. Thanks

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chonky · 04/11/2007 18:47

Hi tashm, I'm more than happy to try scanning it for you - however you're welcome to have my copy if you want it. It's bout to go to the charity shop otherwise.

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Ah5337 · 27/11/2021 20:02

Can anyone give updates on how their child has progressed?
My son had dvm when he was 3 months and it cleared up when he was 5 and half to 6 months. However he is developmentally delayed so I wonder if it is all connected.

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