Suddenly having a child with an additional need?

[Katymac]

DD can't see atm, we have been told it's temporary & will go

But it's been a week now & I guess I need to think more long term

Keeping it all in line & remembering everything is hard. Fitting in meetings while working F/T is

I know it's temporary, I hope know it will go away but it's a struggle

We both have a lot to adjust to

Katymac, I can't not reply to your message... you sound so calm, but you must be very frightened, and your DD too... do you think the doctor's might be wrong about it being temporary? how long do they think it will last? I really hope things get better and quick.

Can you ask a more specific question? maybe someone with some experience of this will answer. ((hug))

I just worry - I mean that's what mums do don't they?

They haven't given it a name, they said it would last a day or so

I am so confused - DD is OK, chirpy & happy not tremendously upset

I can't even research it

If you don't know what it's called & you don't know how long it lasts - you're stuffed really aren't you

This might sound daft, but how old is your DD, and how did you figure out she couldn't see??

She's 12 - she had a bug (dizzy) & some double vision, then it blurred, then she lost all her colour here & here

blimey... that's all a bit shocking.. gone to read the rest of it
x

Have you heard of OMG (Ocular Myasthenia Gravis), Katymac?

It is a purely eye-related component of the auto-immune disease myasthenia gravis. Around 12.5-30% of people only ever get OMG, that is that they don't go on to get full MG. Symptoms include variable blurred/double vision as the muscles in the eye weaken/strengthen.

Katy, I hope someone pops up with a bit more experience in all this. .. I wish I had something more to offer you.

where are you living?
if you are anywhere near moorfields eye hospital in central London, they have an accident and emergency section. someone else did suggest it but they also have a help line as well as a special paediatric unit. Might be worth asking for a referral, although I think you can just turn up for A&E.

for some reason your thread makes me think of my gran, who could watch the snooker in black and white quite happily. she said she had no problem telling which ball was which colour, even though she couldn't see the colours [sceptical]

I wonder why your DD is taking it so calmly?

But isn't OMG in older people?

I am very concerned that dd is taking it in her stride

Yes and no. More common in adults, but if a child is going to get MG, then OMG is by far the most likely form, according to web stuff.

I really don't know anything about it, but was googling symptoms and it came up.

The hospital said her eyes are fine

So I guess that means it's stress related

Sending lots of good vibes.

I do hope it goes soon, but know very well how difficult it is when you don't know whether to arrrange your life for a short term illness (just digging ourselves in and life will be resumed as usual next week) or for a longterm condition (this is now our normality).

That's it exactly Cory

We have borrowed an MP3 player, but have limited ourselves to copying talking books that we own rather than buying new ones

Do we buy a bit of kit that will let her use the computer (for £2-300)? or do we see if we can borrow one

I made her cook the tea on Saturday (she normally does a proper meal) - only soup & garlic bread.....but she has to start somewhere

Had a lovely chat with the GP today

He has come across it before (in girls & boys unlike the hosp dr) & reckons it should go in 6 to 12 weeks

The important thing in his opinion is to keep reaffirming that it will go, refuse to discuss/entertain the possibility of it being permanent and for her to do everything she would normally do.

He is concerned that the sensory support people being involved might give the impression of 'permanence' & I must emphasise to them/DD that they are only helping for a little bit, a few days etc