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Original poster

DD has lost all her colours

63 replies

Katymac · 28/02/2010 21:51

I tried posting here & apart from winnybella I was talking to myself

I am so worried about her sight, she can't see any colour and her vision is blurred & fragmented

Can you get migraines without any pain?

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Original poster
Katymac · 28/02/2010 22:53

I think I will go to the appointment - I am not very happy atm - & who knows it might be a migraine & they could do something

Even if I ring at 9am they aren't going to be able to give her appointment to anyone else

I'm not sure why the Dr said not to go back there

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chipmonkey · 28/02/2010 22:53

Visual disturbance with migraine generally lasts about 20-30 minutes then improves and is later followed by a headache. It usually wouldn't last as long as a couple of days.

Agree with Carmelita re Moorfields if you can get there, it is the centre of excellence for these things.

So sorry you are having to go through this, you must be up the walls!

Original poster
Katymac · 28/02/2010 22:54

What colour is salmeterol?

She has the other 2 definitely

I told them about her asthma but they weren't very interested

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Original poster
Katymac · 28/02/2010 22:57

It's purple isn't it

She is on that too

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winnybella · 28/02/2010 22:57

Definitely call them first thing in the morning to arrange for a scan tomorrow. It should be treated as an emergency.
A child with vision disturbances like that should not have to wait for 3 or 4 days.

Original poster
Katymac · 28/02/2010 23:05

Thanks everyone

I'm sure it will stress or a migraine but what if.... so I will be down at the hospital tomorrow am

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Original poster
Katymac · 01/03/2010 07:32

DH thinks I am wasting my time - but she has woken up worse.

So we are definitely off to the hospital

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Colonelcupcake · 01/03/2010 07:45

Hope your DD is ok and it all gets sorted

Original poster
Katymac · 01/03/2010 08:22

Thanks

I'm back to gibbering again

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bellissima · 01/03/2010 08:50

Another vote for Moorfields - they care for my DD. And best wishes whichever hospital you go to.

CarmelitaMiggs · 01/03/2010 09:10

I would ring the moorfields advice line too before you go (if you haven't left already)

Keep us posted

Original poster
Katymac · 01/03/2010 15:15

Sorry I had already left by the time I got your message & I only just got back

I went they did loads of tests & said everything was fine.....which it is apart from the fact she can't see straight or in colour

The second hospital rang while I was out & made an appointment for tomorrow & now I don't know whether to go or not

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Jux · 01/03/2010 15:32

Go. You won't lose anything by it. The more investigation the better.

Original poster
Katymac · 01/03/2010 15:48

I don't want them to think I am playing the hospitals off against each other to get the diagnosis I "want"

DD is desperate to go to school tomorrow

The other hospital just rang & said to bring her there anyway

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CarmelitaMiggs · 01/03/2010 16:53

Did they do a CT or MRI scan today?
Did you see a neurologist?
Because you need to tick both of those boxes before you accept 'everything is OK', I think.
I'm no expert but I think it's pretty unusual to suddenly lose colour like this.
Definitely take up the appt tomorrow. Worth being insistent and pushy. Who cares what anyone thinks?

Original poster
Katymac · 01/03/2010 17:15

Well I burst into tears when talking to the 2nd hospital today....which is why they still want to see us

I am not happy at all if 'everything was fine' then DD would be able to see properly as she can't see properly everything is not fine

But what do I know

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CarmelitaMiggs · 01/03/2010 18:49

Trust your instincts.

Might be worth ringing the Moorfields helpline tomorrow before you go too. They might make some suggestions of things to say or point out.

coppertop · 01/03/2010 18:55

No advice to offer but hoping that you and dd can get some answers asap. xx

morningpaper · 01/03/2010 19:00

oh how stressful Katie

FWIW, I get migraines without the pain - I see curls of lights and funny colours and massive blanks in my vision - letters and numbers don't make any sense. It happens maybe once a month but if I lie down it goes in an hour or so.

I hope you get some answer soon!

thisisyesterday · 01/03/2010 19:01

agree with the others Katymac

trust your instincts. you hear about things all the time where people are told "it's fine" and then it isn't.
not that I want to scare you, but you are right. everything isn't fine, she can't see properly and they need to do every single possible test under teh sun to find out why

be pushy, cry, shout, do whatever it takes to get them to take you seriously

Original poster
Katymac · 01/03/2010 19:06

How sad is this:

My mum is coming to the hospital with me tomorrow

I'm not sure she trusts me to make enough fuss

DD is lying on the floor (she can't get comfy) listening to a Jacqueline Wilson on a talking book staring into the middle distance

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differentID · 01/03/2010 20:02

Katy, this is where you need to become pushy mum. Pushy people get what is needed because they are pushy. I hope they do come back with a diagnosis for you.

Original poster
Katymac · 01/03/2010 20:05

I am praying it is a virus or a bug or a migraine

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Hassled · 01/03/2010 20:12

Katy, I'm so sorry - and blimey, your DD has been through it recently. I have a fairly quiet week if you're at the hospital close to me, and I do stroppy/pushy/persistent particularly well . Let me know if you want some company.

Original poster
Katymac · 01/03/2010 20:21

Poor poppet - she has had tonnes of crap

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