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

Well, that could be viral then, probably is, in that case the blood test alone will not confirm anything except low-level inflammation which is pretty certain then, drs are likely to write off most of the stuff as viral. Hard.
Even mri might not help much, coz they just look for lumps and doubt if they would see inflammation.
Have you investigated swine flu side effects?
If she was mine, I would try natural antiinflammatories, eg green tea, turmeric (probably more foods too) at the same time as some gentle/low dose Zn supplement that would boost her immune system. Also vit B-complex for both of you to help with stress. And research more options on the above, as well as all that you are doing so far. Find any experts (pubmed scientific publications) on swine flu and contact them for advice.

hi katymac, nothing practical to add, you've had loads of good advice from other posters more experienced in ths arena, but i want to add my suport, and i'm shaking my pompoms for your DD to have a quick recovery and for you and your DH to get through this too x

some examples of general use foods/herbs you can try here

I would worry to let it go on, b/c if the blood supply to parts of the eye, retina etc is blocked/interrupted/affected for too long, they might get damaged beyond repair. It's like they might "forget" their function and not regenerate.

Thanks

I can see I have some research to do

Well she is seeing a psychologist each week (well not this week - she saw me & DH today)

What did the psychologist say today? Does she agree with the diagnosis?

She is struggling with treating DD if we aren't happy with the diagnosis (emotional pressure? not sure)

Have you tried getting a pair of glasses? I know she doesn't need them but sometimes a weak prescription can prompt her eyes/brain into seeing a bit better.
I very low presciption won't damage her eyes in any way.
I have seen a couple of children before than have complained about visual problems, have then been prescribed a very low prescription for a few months and have then been okay. I've never got into the why they can't see, but when they both came back for 3/6 month checks they weren't having any problems.
Its probably quite a grey area prescribing on the NHS, but personally if it was me, I'd go and have a chat to a local optometrist, see if he/she can help.
If you have no joy please post back and I'll see if i can help
Carole - Optometrist

Thanks DD has been seeing a behavioural optometrist who has prescribed low plus lenses & is trying to help us get the MRI as DD has sluggish pupils - which she is very unhappy about

Oh good crikey - I was sure they would do the bloody MRI at GOSH - shame on them for not doing it!

Katymac - so that you're no further forward with this. YES, it might still be conversion disorder but they have NOT ruled out other potential neurological causes yet! It's crap.

How is your DH being with your DD? Is he helpful, understanding, supportive - or is he impatient and non-understanding about it? HOw did he go with the clin.psych appt - did it make any impact on him?

Long shot - might have mentioned it before - but have you taken her to UCH? My niece had to go there before her brain tumour was diagnosed, having been mis-diagnosed variously as teething, ear infection and tonsilitis (wtf?) for 3m prior.

How does your DD feel about things? I know she didn't much want to carry on with hospitals and docs and things after GOSH - but how does she feel now?

So was I - completely certain

The lady at NBCS can't believe it; if it's post viral or CFS or something then the MRI won't show anything anyway

DH is OK with her; less so with me

I do too much on the computer - work, accounts, OU & here; which all came out at the psychologist. I shout at DD too much, I pointed out that I don't interfere when he shouts which I think hit home, plus I have to work or we lose the house I think hit too

DD is kind of sad, and down a bit; but keeps trucking on

I've probably watched too many episodes of "Mystery Diagnosis", and anyway for good TV they only show the most "interesting" cases - which weren't at all interesting for the patients and families concerned, only devastating about the lengths they had to go to in order to get a definitive diagnosis. I think there is a tendency for one particular diagnosis to follow a patient and some subsequent specialists can't think outside that box.

Like others, I am really surprised an MRI hasn't been done. Yes, I know they're expensive and time-consuming, but I would have thought that's the only way to rule out anything affecting the visual cortex (which is at the back of head) and the pathways through the brain connecting to the eyes.

I'm also not surprised that your DD is feeling down - it's not easy coping with being told it's psychological (which can easily get interpreted as it not being real), and confidence in the medical experts can hit rock bottom.

Certainly I know that stress plays a role in any illness/condition, but sometimes I think people don't stop to consider whether it's a cause or an effect.

Actually being let down by medics was brought up the psychologist yesterday; both DH & I have been misdiagnosed (more than once) and in a least one occasion for each of us we were faced with a life threatening condition, I nearly died

So our confidence in Medics is small; which of course affect this situation

Well it's 3.5 hrs away but that doesn't matter

I'll talk to DH & my parents later & then ring them tomorrow

I'll still need a referral but I reckon they will take one from the optician

Katy I really hope you get somewhere with this, I just can't believe the attitude of the drs - not even a blood test!

I have a lady on my side now

We will see how effective she is at getting a reaction

Fingers crossed

Like I could not tell all on here??

LeonieDelt it's only MN that enables me to cope

The psychologist has sent me an email:

"I have had a conversation with Mr W (ophthalmologist) and he has tentatively agreed to make a referral for DD to have a scan. I am getting a letter typed up to you today which I am sending to Mr W. I do think that it is important to make this the final investigation for DD and, if the scan is clear, to stop looking for alternative interventions and minimise the number of eye appointments DD has to go to in the future. Hopefully having a scan will ease the stress and worry that you are under which in turn will help DD."

I'm a bit about the middle bit - but generally happy (I think)