Another A&E thread

your DGD is 7. She cannot self advocate. She only has you and her mum. I do not understand how you can be so calm and satisfied with the migraine diagnosis which is just a medical opinion in the absence of diagnostic tests. I absolutely would go back now.

@MyOtherCarIsAPorsche Has your dgd been tested for hemiplegic migraines? My adult niece has them, the first time left her mute for a few days & she had to use a whiteboard to "speak"

I was very concerned after you took her the other day and they didn't scan her, as she met the criteria IMO.

She meets the criteria even more now, OP - please take her back and advocate for her.

Only read pg 1 but can’t understand why you’re waiting! Droopy eye, head pain, change in pupils, visual disturbance…
What are you waiting for?

Please OP, listen to the many people here telling you to act now and go back to A&E. Do not keep waiting for the glasses to solve a problem that is very much likely not connected to them. @Somuchgoo is so right and you need to Do something.

I would want a scan. My cousin was diagnosed with migraines at age 9. Turned out she actually had water on her brain which needed a simple stent. By the time it was picked up she was 16 and she died after the operation. If they’d picked it up at age 9 it would have been a simple operation. I was 14. The hospital that found it was different to the original hospital, who never did a scan and just gave strong migraine tablets. They paid out due to negligence but it hardly replaces a dc. While that’s rare, how they can diagnose without a scan baffles me.

That said, dh gets eye lid drop with migraines.

I really don't want to be the scaremonger of doom here as the overwhelming likelihood is that it's something minor.

But

On my kids brain tumour ward guess how many of us were told 'it's nothing to worry about' . Answer: all of us.

How many of us were fobbed off repeatedly by doctors (especially GPs). All of us

How many of us only finally got our answer when they did a scan. Also all of us.

The wait meant that one girl is paralyzed. Her parents had been nagging doctors and waiting for many months.

Immediate surgery was required for my child to save her life. I'm quite glad I didn't listen to that last GP...

NICE guidelines and the Headsmart charity guidelines as day that imaging is required. Its really important to push for it, however precautionary it might be.

Obviously the are many other things a scan might also show that need immediate treatment, some more sweetie than others, but none of which can be diagnosed without a scan. It could be a bleed or raised pressure, excess fluid, a brain abnormality that's only now causing an effect, a thousand things. And it may well show nothing, and it's just a migraine, in which case at least you can sleep at night.

But I probably would wait until morning personally.

I know, but without a scan they can’t be sure.

@MyOtherCarIsAPorsche you need to
go straight back to A&E now and demand a CT scan. I don’t want to frighten you but my dad was diagnosed with a brain tumour after months of headaches and the GP dismissed it as “getting old”. You are your granddaughter’s advocate. No one can tell it’s nothing serious WITHOUT a scan. Go now and refuse to leave until she has a scan.

No-one can possibly rule out a tumour without a brain scan. An optician should be able to see pressure on the optic nerve or swelling in the optic disc but absence of those don’t rule it out.

Best case scenario is that it is some type of extreme migraine but I would want a scan asap to be sure.

@MyOtherCarIsAPorsche I really hope your granddaughter feels better soon. They are such a worry when not right. Poor thing must be fed up!

Has your DGD been tested for irlen's syndrome?

@amusedbush so sorry to derail but I'm very interested in your mention of irlen syndrome. My son is suspected to have it and currently undergoing assessments.

I have read -as you mentioned- that there is doubt it exists. He also has suspected ASD but has no issue with reading, he is an excellent reader. Can this still be irlen syndrome?

Also can you explain at all (no worries if not) how the coloured glasses/lenses make a difference?

Thanks!

When my child had raised intercranial pressure causing optic nerve swelling it could be easily seen by high st optician by taking photos of eye and hospital eye doctor using torch shining in eye and some sort of magnifying thing you rest your chin on. 2/3 people did the same exam.Has anyone done those things? I would hope so as she went in to a and e with an eye issue and headache. If not, or that was done ages ago, ask for them to be done. Specifically ask whether they think it could be a brain tumour or anything else in the brain causing this. If they have done those things, then unlikely to be this..

You’ve been palmed off, I’m afraid.

She needs a scan of her head, to try to ascertain the cause of this.

No one can assure you that she is ’fine’ without a scan. And clearly she is not fine.

Take her back and insist on a scan. Insist. Tomorrow if tonight is impossible.

Have they ruled out a brain aneurysm????? I suffered from one and had the same symptoms as your GD. It started off as constant headaches, sickness, drooping eye. Initially, it was diagnosed as sinuses!!!!! It wasn't until I lost my vision a couple of times for a few seconds, then one morning I woke up and could not open my eye, when the eyelid was prised open my eye was pointing to the right. I had a MRI & CT scan where one showed the brain aneurysm but the other didn't, sorry I can't remember as I was in too much pain to care. I was operated on immediately. Please push for both scans as if they hadn't operated when they did the aneurysm could of burst at any time,

I really think you should take her back tonight. They can insist she's fine and your daughter can insist they scan her.

Did they do a brain scan, lumbar puncture, blood tests etc? Her eyes will look fine if it's raised pressure on the brain - it's behind the eye, not in the eye.

Read this - it fits

https://www.nhs.uk/conditions/intracranial-hypertension/

She needs a brain scan. Take her back to A&E. Raised intracranial pressure can cause these symptoms.
Needing glasses wouldn't result in a headache so severe that she winced when taking a step. Insist on a scan.

I would be wanting an MRI to rule out anything pressing on the optic nerve. My friend had similar as a child and after many years a benign tumour was eventuality diagnosed.