Another A&E thread

[MyOtherCarIsAPorsche]

AIBU to take granddaughter to hospital this evening or will it wait?

She's been having headaches regularly this year. She describes pounding and pain in eye. GP said eye test - optician immediately said that she could see a large prescription. DG had glasses then three months later had another checkup and a stronger pair prescribed. She's due back in December. So I'm assuming that they're increasing the strength of the glasses in increments.

Her headaches have persisted. This current one she's had since last Friday. I picked her up from school on Monday and could tell that each footstep was making her wince with pain. She couldn't sleep Monday night because of pain and feeling sick. We've been alternating paracetamol and ibuprofen for pain relief. Saw GP on Tuesday who said it was nothing sinister but was referring her to paediatrician. This evening she was complaining of eye and nose pain and appeared to be light sensitive. She's woken in pain a couple of hours after she went to bed and her eyelid is drooping.

Is this worth a trip to A&E?

We're very worried.

So sorry your family are going through this. Your poor daughter and you must be at your wits end.I’ve been following you since your last thread about your DH, I’m surprised your still standing ! I fully understand you having to take your GD to appointments it’s not easy seeing a Gp.
Me and my DH were just saying we need to spilt ourself into four, there’s just not enough time to go around.
Just here to send lots of love and luck your way. Hope things improve very soon for you all.

I was insensitive and I apologise. It’s a difficult situation all round. I’m glad you’ve got other family to help.

@Limetreee
🥰

Call 111, they will probably suggest a&e but that way they will warn them you are coming and if a concern they can bump her up the queue.

@Daffodilsandtuplips

Absolutely no need to apologise.

You made me chuckle - think I have developed a very dark sense of humour this past couple of years 😉

(Obviously unless it's called hysteria. Dunno.)

It's amazing - the ability to laugh in the midst of turmoil. H and I used to go running and compete to get back first. Now it's hilarious because we play competitive blood pressure. Who can walk furthest uphill without bringing on chest pain. Who's had the least sleep. It's only the goal posts which have moved ....

You just need a signed letter from your daughter advising the GP that you ( grandma) has authority that day. Date should match date seen, new letter each Time or addition of your name as guardian to record

Thank you, I’m glad I made you chuckle.
Laughter helps a lot, if we didn’t laugh we’d cry, I’m the same, find humour in the daftest things.
Stay strong op.

OP, I've no direct experience of this but something on another thread made me think of your DGD.

Someone posted that headaches not responding to medication, dizzyness, visual issues like blurred vision was how their CFS / ME first presented.

I think I'm right in saying there is a link between hypermobility (which I seem to remember you saying DGD has / there is a family history of?) and CFS.

Think there's link.

Daughters were diagnosed on the autism spectrum in primary school and fibromyalgia before being diagnosed with hEDS in their 20s.

When I suggested that there was a link between hypermobility and autism I was told off for googling by a consultant. DGD is awaiting assessment.

Day 21 of headache and eye pain.

She was crying yesterday morning - H had to ring me to check that he should take her to school. (Mum at work, me an hour away childminding for our other daughter.)

There are cluster headaches in the family, migraines, autoimmune disease EDS and POTS/autonomic dysfunction.

What an inheritance.

Has she still not had a scan, OP?

No - I specifically asked if she needed one.

GP made me feel silly.

Have you asked for a second GP opinion? I’m actually shocked that your poor granddaughter is still in so much pain after so long and nothing seems to have been done

So next time, assuming this pain does not let up, don’t ask, tell her that you want her to be scanned asap.

Two different GPs and a consultant have all said the same.

None of them have done the tests to support the diagnosis though. It’s basically just a guess. They may be right, I hope they are, but after 3 weeks you’re absolutely justified in asking for further investigation/second opinion.

Hoping for some positive update OP!

How is your DGD now @MyOtherCarIsAPorsche - I really hope she is feeling better and the headaches have stopped

She's with me today - she's been sick twice this morning. Still has pain. It's half term so not been in school this week.

We thought the break would clear up her headache/eye pain. But no - she's saying it's the same. Saying that, we thought the last pair of glasses would have made a big difference as the optician said that one eye was compensating for the other.

It's worse first thing, at night, during the night.

She's refusing calpol now as she's said it will make her sick again.

She's sat knitting at the moment.

And is the hospital still refusing to scan her? That poor, poor child.

Any pressure on the brain is worse in the night, morning and evening. I really cannot believe you havent been back to the hospital insisting on a scan. It's unreal.

I don't understand how she can happily knit with severe eye pain. Why doesn't the knitting make the eye pain worse.

You poor things, and the poor child.

Is there any way you could scrape together/beg/borrow/ money to take her to a specialist for a scan and someone who understands these constellation type conditions?

We are a neurodivergent/fibro/m.e/hyper mobile/stomach issues/POTS etc family and it can be so difficult trying to get people to see the whole picture instead of writing individual symptoms off.

I don’t understand how they can confidently rule out a brain tumour without a scan. That little girl is suffering. I would take her to a different hospital for an entirely different opinion. My son had a few headaches and one vacant episode (silent seizure) and he was given an EEG immediately. Your hospital and GP sound shockingly lax. As my FIL used to say, “the squeaky wheel gets the most oil”. I would fight tooth and nail for a scan, not just let her suffer for weeks on end. I can’t believe this tread is real.

I have to agree. I cannot believe this child is still suffering.

Why aren't you at the hospital now with a print out of nice guidelines demanding a scan ?