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MRI scan shows 'very reduced white matter' / 'very thin collosum'

(11 Posts)
IndiaBound Fri 07-Feb-14 12:09:59

Hi all

I have been recommended to this board from the general children's health board.

Our DD (now just 10mo) was born 9w premature but after the initial stay of 10 days in NICU, has gone from strength to strength constitutionally.

She developed a squint at 3/4mo and when we eventually were referred to Moorfields they suggested a neuro check. This resulted in an MRI scan. In terms of development she is about 3 to 4 months behind the end of the acceptable ranges (held head strong at 7 mo, is trying to sit now but cannot do mini push ups, does not feed herself).

The good news was all around the eyes is fine, so a small op should correct the squint and give a good chance of 3D vision we are told.

The bad news is that the MRI showed reduced white matter and thin collosum.

The neurologist has stated that we need to stimulate (we will see a specialist paed for instructions) and that her brain may work its way and realise to use the remaining white matter. She stated that DD will walk, talk but when I asked about education, etc. I received a "wait, monitor and see" comment.

Now, we love DD to bits, her smiles and giggles mean I will always be there for her but we all hope our children will go on to have happy independent lives and then we have been hit with this.

I wonder if anyone has any experience, or could advise at what point they realised that their children had special needs.

Also, if anyone knows of any stimulating techniques/objects we should be using, all advice is welcome.

TIA

G

PolterGoose Fri 07-Feb-14 12:27:03

Message withdrawn at poster's request.

bluebirdonmyshoulder Fri 07-Feb-14 12:31:18

Welcome to the SN boards but so sorry you're here if you know what I mean.

I'm afraid I have no useful knowledge myself but have you heard of the Children's Trust? They are considered experts in all kinds of brain disorders. I'm sure they'll be able to give you some advice.

www.thechildrenstrust.org.uk/

Arohaitis Fri 07-Feb-14 13:00:00

people will be along soon to talk about the MRI and share their experiences, I have seen several threads on here where people have had good 'outcomes' in terms of learning etc. It is also notoriously difficult for Docs to predict outcome based on scan results at this age.

The kind of stuff that was used to stimulate our dc (different situation) but hospital/specialist directed was different music, stories, sounds etc, lights, they had strings of lights which changed colour (very similar to fairy lights) and lovely in the dark!, textures so those kind of squeezy balls you find in 99p shops (some smooth, some knobbly, some like soft hairbrushes/hedghogs-obviously you would have to watch your dd the whole time she has these since they are not for babies but they used to rub them on skin/hands, let her feel textures or grasp them but not let her have them completely IYSWIM. I have seen similar balls in mothercare (like knobbly sponge balls!!!) you can also get some toys that have different textures, sounds, colours, smooth, knobbly etc. Fabric so some shiny stuff, soft stuff, lacy stuff, taggies type things, rattles, getting her to reach out for stuff moving things/placing them just out of reach to encourage them to crawl. We also had a special chair for sitting in she loved, it is a really firm supportive one with sides and I have totally forgotten the name but they will prob lend you one if she would benefit from it.

From memory it is about stimulating all the senses, trying to encourage the next step and doing it safely, a lot of the stuff can be made or got cheaply some will be given to you. Have a look online one of our local services did open access to a sensory room so a local childrens centre might do the same, it is worth looking aroundto find the one with the services/facilities in my experience they are focussed rather than all of them (but obi. it might very around the country)
Hope that gives you something to go along with

Good luck

ouryve Fri 07-Feb-14 13:15:15

Even if Arohaitis' list seems huge and overwhelming (and expensive), it's worth contacting your local surestart to see if they have a baby sensory room at any of their centres. (and I've just spotted that she mentioned children's centres at the end of her post!) Ours is a small one annexed to a bigger one a couple of miles away and still has the sensory room and a softplay corner (DS2 still uses these, when they're quiet, and he's nearly 8!)

autumnsmum Fri 07-Feb-14 14:19:08

Just saying hi and to second the advice above our local child development centre has a drop in session and they have a brilliant sensory room

AgnesDiPesto Fri 07-Feb-14 17:18:21

Cerebra have a lending library of sensory toys etc you can borrow for free. Local toy libraries also worth a look.

Sneezecakesmum Fri 07-Feb-14 20:12:03

Scope have a download with tons of ideas for stimulating children

www.scope.org.uk/services/early-years/products/play-resources-disabled-children

Click on the Play talks link

Snowdrop.org is especially designed to stimulate damaged areas of the brain. It's very intensive but worthwhile for many families.

The brain is like a muscle. The more you work it the bigger (or better neural connections if you want technical!) it becomes.

Arohaitis Sat 08-Feb-14 14:45:44

ouryve sorry didn't mean to overwhelm the OP just wanted to cover a range of things and give some choices IYSWIM.

to be fair I did mention 99p shops for most of it, and tried to focus on the cheap stuff, (except the chair which I think is tremendously expensive and was loaned out when needed or only supplied in hospital) most of the stuff can be got very cheaply even bibs and baby clothes have different textures, fabric is just offcuts, a lot of people (and 99p shops) have strings of fairy lights or they are cheap in all the usual places, use a torch, a wooden spoon, all the usual feeding equipment can be fiddled with (and most is safe to chew!)

IndiaBound Sat 08-Feb-14 20:49:24

Hi all,

Thanks for the comments and to know we are not in this alone is a great support.

@Sneeze... what is Snowdrop.org - when I put it into my browser I get a web site about PC support!!

Many thanks

Sneezecakesmum Sun 09-Feb-14 10:47:31

www.snowdrop.cc This is the right one smile

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