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

[stleger]

How quickly would you be able to get an appointment for a second opinion? Would it be faster than waiting to see your own current hospital again? (We saw a specialist privately with a knee problem my dd had; he was an orthopedics specialist, and it took months as he was busy with ice skaters and skiers). If there was a delay, could you see an OT quickly? I have been following this thread a bit, I have 2 teenage girls and can see how their psyche and physiology can interact!

[Katymac]

I have no idea - but they are good questions to ask when I see the GP (when I get n appointment with him)

[stleger]

I hope you get somewhere with all this soon - an improvement would be great, but answers would help! Is there any way of seeing a clinical psychologist with any experience of blindness? Or would that only be possible with an absolute diagnosis? Is there a GP in your practice who is interested in eyes? We had one in our former practice, we have one who does all the skin problems in our current place.

[Katymac]

I don't think we have a GP who knows eyes (I'll ask)

We are seeing a psychologist - last week & again in 4 weeks

My big worry is if I do nothing what happens in a fortnight or 4 weeks or 6 weeks if we are still where we are now & I've done nothing

[IMoveTheStars]

Sorry if this is a really stupid question - did you take her straight to the GP, or did you consider taking her to the opticians?

Just asking because when I had an injury to my cornea the optician was able to refer me directly to the eye specialist at the hospital that day.

Just might be useful for a second opinion?

(again, sorry if spouting the obvious)

[Katymac]

I went straight to A&E - as it was such a shock/emergency imo (which it might not have been but for a little girl to lose most of her sight I thought it was)

I guess my big worry is, that if it is physiological rather than psychological should we have been doing something else, & by not doing it have we harmed her?

I hate waiting - I never do it well

[Katymac]

nope - & tbh none of the options it could be make that very likely sticking my head in the sand

If it's psychological - who knows but I that doubt it would be permanent

It could be a conversion disorder but is like PTSD

Optic neuritis (which is the most likely) will clear up eventually but faster with steroids

No knowledge about what a problem with her optic nerve could be

& I won't even consider there being a problem in her brain

[Katymac]

So why am I so worried about it?

[Hassled]

I think you should get an appointment with the nicest, most clued up GP available and just say what you've said here. You don't know what to do, and the GP is the person to guide you. My instinct (knowing nothing) is the Moorfields referral - you've not been especially happy with the big local one. And the Wait and See approach is all very well, but you need to know you've done everything now that you could possibly have done. So get the GP to point you in the right direction.

Have been thinking of you a lot - does DD have any of the Harry Potter audio books? Is she interested? Because a) we have a couple on iTunes and b) we have a spare very old ipod shuffle kicking around.

[Katymac]

I'd be happy to go back you your local Hassled - but not my local iyswim

She has borrowed an iPod & is using that, but struggling with the controls - her friends help

I'm not surprised you are feeding again - I fed 20 hrs out of 24 with DD......& you have 2!!

[Katymac]

Aw bless

[tatt]

Don't know the background to this but from what other people have said sounds like you aren't totally happy with your local hospital. So if you are within reach of Moorfields ask to go there. A large part of their work is pretty basic but if it's something unusual they are best placed to diagnose/ treat.

Dh had an eye problem the other day and I had him off to the nearest eye hospital (which has a walk-in clinic) like a shot.

[Katymac]

Thanks MaryZ - I guess you're right - I don't know anything

I mean with the tests they did I know the "eye" itself is fine - but the rest of it?? not a clue

& today I got told they don't do CAT scans on children as they are too frightening ?

[winnybella]

Right.

I have been following your plight and I think you need to get the doctors to do MRI scan on your dd's brain.

Of course you don't want to think about it, but IMO opinion you need to make sure your dd's blindness is not caused by a brain tumour, stroke etc.

Then, once you know that, you can relax a bit and research other options with the doctors.

I have to say I am surprised that there weren't more people on your threads telling you this. I guess no one wants you to worry more than you're already are.

Obviously, if the doctors have good reasons for not considering these possibilities, then disregard my post.

But since no one seems to know what's the cause, I would make sure my daughter had ALL the tests possible.

Good luck.

[Katymac]

Yep - I'll speak to the GP & see where we go from there

I hate not knowing, not being in control - it's my main flaw

[IMoveTheStars]

what maryz and winnybella said.

OP, I'd be back down the GP/hospital or at Moorfields tomorrow. The more information you have, the more relaxed you will be. This goes for your DD too. She must be terrified, which if it is psycological won't be helping.

Really hope you get some answers soon x

[CarGirl]

I concur (is that correct ) . Go to GP say that she needs a brain scan to rule out anything very very scary and after that you can all relax because it's just a waiting game.

[Katymac]

It's very British isn't it "not wanting to make a fuss"

Well I do want to make a fuss - I accept that there is a lot going on in DD's life but this seems very extreme

The minute we admitted there was any stress in her life they hung their diagnosis on it & stopped investigating

Big, big fuss