I want someone to tell me what to do - I have too many options

[Katymac]

I am feeling very out of control & unsure about what to do with regard to DD not being able to see (which might or might not be psychological). Should I:

a) See GP about DD' sight & ask for:
i) a referral or a second opinion (who - Big local hospital or Moorfields)?
ii) a referral to an OT?
iii) something else?
b) wait until mid April & see current hospital again?
c) Speak to the CAMHS person to see what they think?
d) something else

and as for 'don't do' cat scans etc, if the child is too young to understand and lie still/ not freak out, there are sedation options that can be used.

i'd be doorstepping the doc for a referral, and not leaving without one, tbh. i'm slightly bemused why this hasn't been done already - but i guess they were happy there were no indications of anything more sinister. the only way to know for sure is to voice your very worst fears to the experts - we waited two years for a cerebral palsy dx for dd2, and they only gave us a dx when i actually asked - what is wrong with her? what is her diagnosis? what do i write on paperwork? what do i tell nursery/ school when they ask me what is wrong with her? all the therapists had known for donkeys and were treating appropriately, but sometimes there is an element of treading softly so as not to alarm parents.

(that's not to alarm you, lol, more to get the experts to face up and actually allay your fears)

KM, whilst you are waiting for specific referrals, you could still ask GP for blood tests, eg autoimmune, liver function, diabetes plus anything else sensible he could suggest.
You should try to get to the bottom of it, not just rely on steroids, as long-term they will have to be periodically increased and then it's v hard to ever come off them.

You could also ask to go under a paediatrician who might be a better port of call longer term then a GP (mine has been brilliant). They also see more complex cases long term so are more likely to know which way to go next.

Hope you get some answers soon.

Well daft as it sounds I have a GP's appointment tomorrow, (about me, blood test, stress, IBS, CFS etc)

So I can just flip that to be about DD, I guess (I suppose I should phone in the am to let them know) - it's not the best Dr - but whatever

it sounds perfect. i would suggest bursting into tears, which you probably aren't far away from in any case.

i would steer it around to unnecessary stress and what might help (ie some answers wrt to dd)

good luck x

I am a doctor and find it very, very bizarre that the team looking after your dd have not done further physical investigations (namely MRI and visual evoked potentials) before hanging their hat so firmly on a psychological cause. (Sorry if she has had VEPs done but I haven't seen all of your posts).

Now, clearly I have never met your dd and there may be other info that the docs looking after her know that you are not able to tell us as they haven't explained it to you iyswim but I'm very puzzled by this.

Are you under the care of a paed? If so I would go back to them, either directly if you can or via your GP and ask exactly why she has not had these investigations. The whole scan too scary thing is bollocks (excuse unprofessional language but on mat. leave and have had wine).

Isn't that cheating - going about me & then talking about DD?

What she has had:

*Looking at eye charts - she could see 'round' letters about 4 inches high about 2 foot away - but not the 'straight' letters as they all curved round
*Looking at colour charts

• a sort of 3d circle on 4 blocks of coloured shapes (which DD didn't get at all) *People looking at her eyes with a sort of thing with mirrors on a table (before & after drops) *Photos of her eyes (after drops) *a thing which says what her prescription is (a printout on a small sheet of fax type paper) *an eye test with those silly glasses *a machine where she pressed a button when she saw a light

I don't know if these are VEPs?

this?

It's not cheating, but even if it was, it's a bit irrelevant, isn't it? It's your daughter's health at stake here.

Bother them til you'll get a referral to a neurologist and MRI.

I googled visual evoked potentials & she def hasn't had that

Yes very irrelevant

nope. it's perfectly normal - after all, surely that's one of the main causes of your stress currently? (forget long term, both you and dd need help sooner rather than later for this reason.) Any longer term issues that were the original cause for your own personal appointment are surely being exacerbated by the current cause of (this)stress? which could be alleviated by some more pro-active work on the medical profession's part, or at the very least, someone to sit down and explain to you why it isn't x, y and z to stop you worrying about those possibilities.

when dd2 was small, i frequently went to the surgery and broke down (not intentionally lol, it was just very very difficult). the gp barely saw me - except to look alarmed and make a call to the hospital and usher us off there asap. they were frankly terrified of dd2.

get thee to your appointment, and explain the difficulties that the stress of dd's situation is causing the whole family. you need some answers, even if they can't give you the answer.

Katymac, I suspect that the pattern of visual deficit that your dd has complained of and has described during testing does not fit with any physiological pattern/phenomena and this is why a psychological cause is thought most likely. However if this is the case then this should be explicitly stated to you by the doctor in charge of her physical care/symptoms with a full explanation of why they think this way.

Quite possibly, LaDiDaDi, however as you say I should have been told that and I wonder at believing a 12yo's evidence/descriptive ability to be accurate enough to rule out everything else

I'd also take her to a good, independent optician as well as chasing a referral. It might achieve nothing at all, but from experience they can spot all sorts of things with a simple eye exam and are of course, specialists in their field.

My guardian had a brain tumour which was diagnosed/spotted by an optician (and he was a gp too), and another friend was spotted as diabetic by an optician.

I think it'd be a valuable trip tbh.

And I'd ask for a referral to Moorfields. It's the best place to go - and you can't do more for your daughter than source the best help available.

I agree Katymac, I remain surprised that she has not had VEPs and an MRI done, I would be asking serious questions about why she has not had these investigations (there may well be valid reasons why she has not had them but it doesn't seem like you have been given them).

I wouldn't go to an opticians tbh as she's clearly had her eyes looked at quite extensively from the investigations that you list, it's the pathways beyond that that need looking at.

I absolutely agree that it's shocking that she hasn't had more investigations. The "don't do scans on children" excuse is ridiculous! Of course they do! They scanned dd's back when she was 10 and they specifically told me that if she'd been too young to lie still they'd have sedated her.

I am starting to wonder how much faith has been put in DD's descriptive abilities - she does have an excellent vocabulary, but she is only 12 & her opinion of what she can/can't see must (by definition) be subjective - she may not be using the correct words to trigger a diagnosis/non-diagnosis.

TBH I don't think I will have to 'put on' a breakdown at the surgery today - I am very close to the edge & weepy

My DS had an MRI scan when he was 8 because he was

still having febrile convulsions

having headaches

and complaining his eyesight was going bleary every so often

As for being scary it was a big adventure for him.

The GP says she has a conversion disorder
The tests they have done precludes anything else
I have cystitis (2nd time in 3 weeks)
& if it lasts a year & dd misses school she can just do it again

Then I saw the parental support worker - who is worried about me & suggests doing a CAF

Did he explain to you which tests that they have done exclude anything else?