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

No problem

My mum says just because I am feeling paranoid doesn't mean they aren't all out to get me

Not my imagination then

I feel a bit ganged up on

Not spectacularly

Opps wrong thread

I can't believe this is still going on, I'm so sorry. Sending you lots of hugs and hope you get some news soon. Keep us updated xx

TBH - neither can I

Thanks

Just wondered how things are going? Any news? How is she day to day at the moment?

xxx

Thanks for asking

I think she is getting more & more depressed as time goes by

She has moments when everything is fine - but much longer periods when she expresses very little. Academically she is doing better than before, but she is losing her confidence for more physical things & it is heart breaking to watch.

I'm so sorry, that's just awful.

How is her vision? Can she see at all at the moment? What's happening about school?

I know exactly how you feel, Kiara's exactly the same - it really is heartbreaking.

Hope you get some answers soon, what's happening re the scans?

xxx

Seeing is like "through a bathroom window, with bobbly glass but all shades of gray" or an untuned TV station"

It's all fuzzy but she can see movement

I'm sorry she's feeling low. I would really encourage you to get her to write - maybe a diary or to write a novel about a girl going blind. It would be a good place for her to vent her feelings, and hopefully she can type if she can't handwrite easily.
I am thinking of you and her.

Hi there,

New to the story, just read this thread.

Could the "vison electro something or other" you mentioned on page 2 been visual electro-physiology?

There might have been electrodes placed in a contact lens, or attached to the skin around the eyes and the back of the head?
Even possibly a cap with many wires coming out of it?

If so, that's a very good alternative to brain imaging for these sorts of visual symptoms.

In fact, it's arguably better for trying to confirm a diagnosis of Functional Visual Loss (the term medics can use for the pyschological diagnosis of Conversion Disorder).

Yes - watching a chess board that kept changing

I'm not arguing that she has 'Functional Sight Loss' (just found the term today from GOSH letter)

But I think something else is wrong too

Her pupils keep being seen to be 'sluggish' or 'slow to respond'

I don't know if it is neurological or maybe as a result of the illnesses she had or the steroids or something like ME/CFS

But I know something is wrong

I had understood that her "sluggish" pupils had only been seen by:

a behavioural optometrist
an orthoptist
a consultant level medic(I assume ophthalmologist but it's possible it was a neurologist).

Of these, the only one who thought it was relevent was the optometrist, who is the much less likely to be competent in the matter than the medic.

He/She also had the advantage of the other tests which overlap with pupil function, such as the electro-physiology, to help.

Functional Visual Loss is, almost by definition, a diagnosis of exclusion.
You work through all the other possibilities that fit the data and rule them out in turn.

It is not impossible that there is a hidden pathology present but it is extremely unlikely.

And, as I think have been mentioned to you before, there are genuine costs of continuing to search and test for disorders which there is very little reason to think are present.

Costs which on several occasions I have said I will pay for, wouldn't you?

& I guess the orthoptist was fairly concerned about it considering how fast she ran & got the consultant

I think my main problem with GOSH is that they were testing something that we had already agreed was working fine, her eyes, I'm still worried about the rest of her

If it turns out I am wrong, I will look a pratt, DD will be fine - I will be potentially very out of pocket but I will know I did my best for DD; nothing else really matters, does it?

The potential costs are not purely financial though, is there a risk of her recovery being delayed if her condition is functional, and not treated as such.

There is a risk both ways, isn't there? Which is what makes it so horrendous for the OP.

I have experience of the other side (different disability): tests were not done, something that was organic was treated as functional- and again recovery was delayed. Because in our case this was wrong. Of course it could easily have been the other way round: I could have been wrong and more tests could have delayed recovery instead of it being delayed by not enough tests.

Either way, it's a massive leap in the dark.

Is there any way that functional training could start, in a neutral way?

I know it's not a parallel case, but when dd went to rehabilitation clinic, they left it open how much of her symptoms was due to her condition and just told her that they were going to help her deal with the symptoms. At first I think they had envisaged a treatment that was mainly about psychology/pain management and CBT, though in the end it became more and more about OT.

That's what I think Cory

Which ever thing I do is bad for DD - could someone tell me which is least bad, 'cos I'll do that (with evidence of why it's least bad)

"Costs which on several occasions I have said I will pay for, wouldn't you?"

I was not impling any financial costs, either that you would finance or on the NHS.

The best evidence we have on Functional Vision Loss is that the less investigations that are performed, the gentler the follow up schedule and management is the better the outcome.

That is the cost I'm referring to.
And I'm sorry if I was unclear.

In addition, I am certian that the assessment at GOSH covered more than just the eyes.

For example the checkerboard pattern test you describe is called Visually Evoked Potentials and measures the electrical activity all the way back into visual areas of teh barin.
And pupil testing tests nerve systems into the midbrain and top of the spine.

I'm not aware of much evidence regarding the proactive treatment of CBT, as opposed to the passive watchful waiting, but I know some of the literature does suggest CBT and the like.
You mentioned a therapist before, what area of counselling do they specialise in?

But which is the bigger risk

She has a psychological problem which I make worse by looking for a physical problem

Or that she has a physical problem that I ignore & accept the psychological diagnosis

statistically the reports I can access suggest that this is misdiagnosed between 4% & 25% of the time; higher when diagnosed in young girls

As for treatment - she gets an hour with a psychologist once every 10 days or so

Well, I'm not sure what reports you're talking about.
And I'd like to have a look if you can post link or type it the references.

Occult disease, given all the investigations that have occured, is very unlikely.

Functional Vision Loss is not uncommon and seems to be a fairly convincing diagnosis, from what you've posted of the correspondence.

Choices like this are hard, both on a technical level and for you, an emotional level.

I'd trust those who have had the training to deal with the first part and who are fortunate enough to be distanced from the second.

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These are some I bookmarked - I think I have some more somewhere

& I don't know what Occult disease is