Just back from GOSH

[Katymac]

I am so tired

It is definitely psychological

So I wasted everyone's time & we are no further down the line towards a 'cure'

poor DD

Is there a way in which you could start treatment for functional vision loss and still privately look into possible further tests?

Obviously very different situation to my dd's, but this was where CBT worked for us- because it could be equally applied to both an organic or a psychosomatic disorder. Basically, what they said to dd was: We don't know how much is caused by a physical condition, but it doesn't really matter, because either way, this is the situation you've got and these techniques will help you deal with it.

If there is any treatment that could do that, that might be a good starting point for your dd. But I am afraid I don't know anything about visual problems

I haven't had any treatment offered

My apologies, not the most transparent of terms.
Occult as in hidden, undetected.

I've had a browse through the articles and it might be worth noting that when you were quoting the rates of misdiagnosis the high ends were all from older studies.

4%, from the most recent studies, is much closer to the data I'm aware of.

And it's likely that the percentage chance is much lower in this particular case based on patient demographics and test results.

That was the one that mentioned modern diagnostic tests wasn't it?

What it all comes down to is

What caused it

How does it go away

When

"That was the one that mentioned modern diagnostic tests wasn't it?"

Not quite, as much of the shift seemed to be higher research quality and delineation of diagnostic criteria.
And that was clear from all the papers with clear enough references to be sure.

"What it all comes down to is

What caused it

How does it go away

When"

I don't think anyone can give you satisfactory answers for those questions.

Much as many would want to.

Just been reading the last few pages.

I think at the end of the day, whatever conflicting symptoms there are or whatever advice you have been told, YOU Katymac are doing an incredible job, to be thorough and check things through, and make sure you're Daughter is ok.

It could be psychological, but I've been through everything you're going through now and it turned out to be a very serious brain condition, and God if I hadn't pushed for that Lumbar puncture I really don't know where we'd be now.

Obviously I'm not saying it will be, but keep fighting and staying strong Honey, you're doing an amazing job.

What's the next steps in getting scans etc.?

Keep us updated and look after your gorgeous girl. xxxx

Seems I'm stuffed what ever I do

Sorry Somewhere I meant to say 'Thanks' I really appreciate your support

it's just I don't have a clue what to do anymore

That's ok Hun, don't worry at all. Have you spoken to PALS?

Just stay strong, we're here if you need us.

xxx

Someone has spoken to PALS for me

She has just shocked us with a near perfect report

What do you mean Katy by a near perfect report?

from the school despite 14 weeks or so being without any adult support

That's brilliant, you must be so so proud of her! How is she at the moment? xxx

Emotional she seems stronger & her mood swings are back (I see that as good preteen behaviour)

She may be seeing better it's difficult to tell

I really hope she's ok, you're doing an amazing job

I so hope things imporve, keep us updated please!

xxx

I always do.....can't stop talking about it really

I think that's a good thing, if you hide from it then it just builds up. How is she managing school?

xxx

Oh congratulations (you and her), and I have everything crossed that it is good news.