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DD sent home from school - she can't see at all now

124 replies

Katymac · 12/03/2010 11:39

I am waiting for the hospital to phone back

I don't know what to do

She was just packing up in Maths and it gradually went black

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Katymac · 17/03/2010 21:14

Thanks MP

I can solve a lot of problems short-term by throwing money at them......but I haven't got any money to throw & if I did should I spend it when her sight could come back at any moment

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DandyDan · 23/03/2010 12:14

Katymac, my child has conversion disorder (getting better) and had exactly the same symptoms as your daughter. If you are able to message me privately, I can tell you about what happened with my child. If this is what is affecting your daughter, don't panic: it does get better. We are two years in from diagnosis and episodes are now very short and infrequent.

DandyDan · 23/03/2010 12:16

Erm, it appears there isn't a PM system here. I am sure I have very very relevant info for you about how it was with us but not sure how to do it privately.

DandyDan · 23/03/2010 12:27

Okay, re-reading this thread - if it is psychological, you need to get referred to a consultant paediatrician by your local doctor. And they can refer you to CAMHS. We had a year and a half of CBT therapy for our child at CAMHS and it worked. If your daughter can't see, you know she can't but you have to reassure her it will come back, even if it's not today or tomorrow. It will happen. The most important thing is to keep calm and actually treat her as if she can see: obviously to walk with her, if walking, so she doesn't bump into stuff, but try not to describe everything, because actually her eyes are working and sending visual signals to her brain - it's just that her brain is blocking the signals to her "conscious self" if you will. My child found they could occasionally get a notion of something that had just happened (a sign by the road) because their eyes had seen it, and told their brain, but they felt they could only see black.

re school, if at all possible, get your daughter into school every day, even if she can't see. Ask for any available teaching assistants to go with your daughter into classes and take notes so she is filling her day as normally as possible and not "feeling blind". If my child wakes up without sight, I go into the school myself and do the lessons with them, or get the material from the teacher and do the lesson in the Student Support Unit. It is very hard work, and emotionally very hard but very important to just be as normal as possible. The only concession to not seeing we made was to buy a very snazzy cane when there was a long period of our child not seeing, but it was rarely used. The most dangerous point was when our child lost their sight as they were walking home from school on several occasions and had to phone us to get them from where they were standing.

But the sight comes back. It really does. But you need to be in touch with the professionals. If there's any way of me and thee getting further in touch, I don't know how.

Milliways · 23/03/2010 16:21

Bumping for Katymac to read this

Acanthus · 23/03/2010 16:25

Dandy there is a private messgae system here, it is called CAT (Contact another talker IIRC)

Katymac · 23/03/2010 16:26

Thanks busy reading
Hotmaildotcodotuk
Katymacb
at

Rearrange at will

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Katymac · 23/03/2010 16:28

very busy reading

Thanks

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Katymac · 23/03/2010 16:39

They have said she can't have a cane as it will reinforce her not seeing

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Katymac · 23/03/2010 18:21

Oh DandyDan please come back.......I didn't realise you were here

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DandyDan · 23/03/2010 18:22

I'll email you. Don't worry.

Katymac · 23/03/2010 18:24

Phew

Thanks goodness you came back

I really appreciate all your help

I was getting very despondent whittering away over here

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LauraIngallsWilder · 23/03/2010 20:39

Hi Katymac I hope your dd and her eyes are 100% soon. How is the previous problem - the dizzyness and pneumonia????
Your poor dd has been so unwell poor chick

Katymac · 23/03/2010 20:47

She had pleurisy in the end the the dizziness appeared to be because of reducing the steroids....this arrived 4 weeks later

Thanks for asking - she has had it rough

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Katymac · 23/03/2010 21:23

Thanks again DandyDan - I really appreciated your email

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LauraIngallsWilder · 23/03/2010 21:25

Apart from asthma has she been healthy up until this recent bout of being bad with asthma, pleurisy and loosing her sight?
It seems such a lot of major illness all at
once

These last few months must have been really scarey for you all

Katymac · 23/03/2010 21:34

It's a massive amount of illness tbh Laura - she has had 36 days off school since September with 2 lots of D&V, tonsillitis, chest infection, chest infection leading to pleurisy, a virus, a bad reaction to her swine flu jab & twice what appears to be a reaction to stopping taking prednisilone (which I only realised when she stopped the second time ), oh & going virtually blind

It just doesn't sit right with me - & most of those were actual physical "I can see she is ill" stuff rather than "I feel poorly" stuff

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Katymac · 23/03/2010 21:35

But before that she had some chesty stuff, the odd D&V a broken toe and a sprained ankle over the last 3 or 4 yrs

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LauraIngallsWilder · 23/03/2010 21:50

So until the last 6 months or so she has basically been a fit and healthy child (no worse than the average kid, plus asthma)

Yet in the last six months she has been really really quite ill several times - I think that is surely cause for serious concern by some sort of consultant type person no?

(I now realise that you are wittering on another thread about this but tis too late now Im wittering on this one!)

Katymac · 23/03/2010 21:52

S'OK I whitter anywhere

I am so down & worried & upset

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Katymac · 23/03/2010 21:53

Her old head thinks it's very odd

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cory · 24/03/2010 08:36

Katymac, we just saw the paediatrician with dd about her frequent infections (she has previously tested negative for immune disorders) and paed reckons the reason for them is tied up with stress: she is less resistent because she is stressed and low (due to chronic pain disorder), this makes her more prone to infections, which in turn leave her stressed and low....so it's a vicious circle.

This too could fit into your dd's problems too. Being ill all the time- and she's had some pretty horrible illnesses by the sounds of it- would make her stressed, which would make her more prone both to conversion disorder (if that is what she has) and to further infections.

btw I am not sure I would accept the no cane- rule. That's what the paeds said to us about using a wheelchair; that dd would basically get emotionally tied to it. I suppose it depends on the child, but we found the opposite: when dd knew she had the option of falling back on aids, she got more adventurous and so more able to do without them.

Katymac · 25/03/2010 14:47

Sorry Cory - I seem to be going round in circle atm & missing things

The Sensory support people agree with you about the cane........why stop her having something that might help

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Katymac · 25/03/2010 20:36

Massively massively impressed with the sensory support team

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