to tell the GP what I want; rather than asking her what can she do?

[Katymac]

There is tonnes of back story to this

But basically DD has gone blind (12 weeks ago) & they won't give her a MRI/CT Scans, do a neural net (whatever that is) or any blood tests

A behavioural ophthalmologist has faxed the GP to arrange these tests; the GP won't

So do I go in telling them what I want or is there a better way?

I rarely (if ever) do AIBU - so be gentle with me; I really am at the end of my patience

This is terrible, just terrible, I hope you get a second opinion, change gp and get the tests needed.

Be firm but calm, get your way, it is your dd, try explaining you need scan etc to put your mind to rest, you could try saying about consultant's rep that you appreciate that but you need to know you have covered all ground, done everything because that is your job as dd's mother.

I feel for you, and really wish you and your dd well.

Thanks everyone I really appreciate your support

It all comes down to supporting DD whether her problems are psychological or physiological doesn't really matter - what matters (to me at least) is that she knows I didn't just sit & let it happen - I fought & searched and made a fuss (even if it did annoy everyone)

Katymac, I was astonished when I came across this thread. I remember reading your threads when this first happened to your dd, but I presumed everything had been sorted out by now. How awful that you are still going through this ordeal with no real answers.

So, I read parts of this thread, about the onset of your dd's condition to my mum who is an optician/optometrist with 40 years experience. The first thing she said was 'has she had an MRI and CT?'. She was genuinely amazed and outraged that this has not been done. Like chipmonkey, we are in Ireland where the system is different. My mum cannot understand how the consultant you saw reached a diagnosis without the MRI/CT to rule out the most likely physical causes.

Would it be possible to have these tests done privately to put your mind at rest? Here, you would need a letter from your GP but you would be able to get these tests done within a few days at a private clinic. At least then you could rule out anything serious and wait the 3 months for the GOSH appointment.

I'm sorry I haven't read through all your threads, but have you taken your dd to a specialist eye hospital like Moorfields? In my mums experience, if she referred a child like your dd to the eye hospital they would get immediate treatment. The idea that you can't go to A&E because it's neither an accident nor an emergency is crazy to me, your previously healthy child cannot see - that is an emergency.

Thanks Verity - I am amazed & outraged as well

But GOSH pals have been in touch so fingers crossed

Katymac so to hear your story you must be out of your mind with worry and frustration.You need to be so assertive with all these doctors and specialists, do not be fobbed off.Please god that something be resolved for you and your little one.Thinking of you.

Thanks darkandstormy

In fact thanks everyone

Courage Katymac, persevere and you'll find the solution for this. I'll be thinking of you and hope to hear some good news.

Another person saying trust your instincts and don't let yourself be fobbed off.

Of course there are some wonderful doctors out there but there are also a lot of arseholes with god complexes. They get an idea of what is going on (i.e that this is psychosomatic) and then nothing will sway them from that. But of course she needs an M.R.I to rule out anything else.

You are doing the right thing and your dd is so lucky to have you fighting her corner.

I do wonder whether if the opthalmologist dd was suffering from this condiiton whether she wouldn't have had an MRI.

Chipmonkey, my mum is really interested in behavioural optom, my 2 boys are dyslexic and she researched it all for us when they were younger. Says she would have done the courses if she wasn't near the end of her career! I don't think she is though as my grandad was one of the first opticicans in the country and he worked until he was 85. I'm sure you meet at CET courses

Katymac that is great, I hope you have good news soon

It is good news isn't it

Katymac I have been to Moorfields A&E a few times, its not been an accident nor an emergency as such (only to me having a v sore eye out of hours) and they have seen me very quickly no questions asked. If it was dd, I would take her down there like a shot - I'm sure they wouldn't question it. They have a specialist paediatric service.

Because DD has been seen at a hospital by a consultant, Moorfields won't see her without a referral from the GP

But I have my referral for GOSH - so I am happy with that

OK that's fine then, glad you are happy. But if anything happens in the meantime and you're worried, I'd just take her. They won't know she's already been seen by a consultant if you just turn up at A&E unless you tell them and you can accidentally forget!

GOSH are brilliant. Not related to vision but my cousin has a little boy with a very rare syndrome and she brought him over to GOSH from Ireland. They were wonderful.

Katymac, get thee and thy DD to GOSH, they are amazing and diagnosed all my sight problems after TWO local hospitals in Essex couldn't. Oh, and one of those local hospitals lost my notes

They're superb, if I was financially able to give every month, they'd get my money for all the help they gave me as a child, and didn't scare me with medical speak either, which even for an older child can be scary as hell!

If you can get to see them, do it

I hope they see her soon

Katy, again not sure how it works in the UK ( That seems to be my new mantra) but if you could find out the name of the consultant, you could write a letter to him/her yourself explaining the history and why you are so concerned. A friend of mine did this after her dd was given an appointment months away but the consultant having read her letter arranged a quick appointment for her.

Hi, had a similar thing with my Grandaughter
GP referred her to Great Ormand Street. It did not take long just a couple of weeks. They put sensors on her head linked to a computer. She watched telly tubbies and they measured the brain activity to confirm 100% wether there was any sight in her right eye. She also had an MRI and it was found that the optic nerve had not developed properly. I would take the appointment at Great Ormand Street they are brilliant and will give you as much time as you need to get all your questions answered. Good luck

Any news Katy?

They emailed to say she could see 'any' eye specialist

In GOSH? That's great, did they give you a date?

I hope things are looking up for you now

"The waiting time to be seen does vary, when a referral is received it is prioritised by the consultants accordingly"

I can't feel too hopeful tbh - I can't risk being disappointed

So your GP has to send a referral letter to the hospital? I would make an appointment with the GP, or at least a phone call and talk through with him why you really, really need dd to be seen ASAP, hopefully that will help in getting her seen sooner.

Let us know what happens.

Supposedly she sent one on Thursday - Should I check?

I don't know why I ask - of course I should bloody check