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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Another A&E thread

534 replies

MyOtherCarIsAPorsche · 12/10/2023 21:53

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.

OP posts:
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Original poster
MyOtherCarIsAPorsche · 25/10/2023 12:59

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.

OP posts:
GrannyAchingsShepherdsHut · 25/10/2023 09:05

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.

Daffodilsandtuplips · 23/10/2023 21:40

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.

WanderingAroundintheLark · 23/10/2023 21:21

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

Original poster
MyOtherCarIsAPorsche · 23/10/2023 20:44

@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 ....

OP posts:
Sofaz34 · 23/10/2023 20:40

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.

Original poster
MyOtherCarIsAPorsche · 23/10/2023 20:36

@Limetreee
🥰

OP posts:
Daffodilsandtuplips · 23/10/2023 20:02

MyOtherCarIsAPorsche · 23/10/2023 14:47

@Daffodilsandtuplips

Like dead?

We have children who are brother, sister to our daughter.

So the grandchildren have aunts and uncles.

My husband helps out when he has to

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

Limetreee · 23/10/2023 18:04

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.

Original poster
MyOtherCarIsAPorsche · 23/10/2023 14:47

@Daffodilsandtuplips

Like dead?

We have children who are brother, sister to our daughter.

So the grandchildren have aunts and uncles.

My husband helps out when he has to

OP posts:
Daffodilsandtuplips · 23/10/2023 14:26

MyOtherCarIsAPorsche · 23/10/2023 09:55

GP appointments are like hen's teeth - we have to take what's available or wait until the next lot appointments are released.

I had to wait a further month for an appointment about my new medication because I couldn't attend on one particular day in September.

If mum attended every appointment for her children she wouldn't have time to work. And I don't think her employer is particularly tolerant with regards to appointments as 'they should all be made on her day off' - which is impossible as clinics are on set days.

Grandad had to attend an orthotic appointment the other day with DGD as mum was working and I was having an echocardiogram.

It's hard to juggle commitments and fit appointments in - I'm constantly cancelling/rearranging my own appointments to accommodate everyone else as it is.

I'm worried of becoming ill myself - then it will all fall apart.

Show quote history

I’m no expert, but could mum get something in place where you can represent her at medical appointments so you could give consent if needed? I’m sure someone more knowledgable on here than me could give advice on this.
But what would happen if you weren’t around op.

Mirabai · 23/10/2023 13:54

MyOtherCarIsAPorsche · 23/10/2023 12:34

I don't know how 'sinister' is ruled out.

She's been checked several times - GP surgery and hospital.

At the last appointment the GP laughed when I said 'do you think she needs a scan?'

They must be thinking she's adjusting to her prescription glasses or migraines?

What can be done? I have directly asked about a scan.

I don't know who to trust.

Sinister is ruled out with further investigation including blood tests including imaging.

On the plus side the fact that she hasn’t deteriorated further is heartening.

Somuchgoo · 23/10/2023 13:14

Sigh...
I'm like a broken record here, but

a) she needs a scan
b) don't just ask for a scan, show them the NICE guidance on reg flag headaches in children and the Headsmart stuff I posted.

Original poster
MyOtherCarIsAPorsche · 23/10/2023 12:34

I don't know how 'sinister' is ruled out.

She's been checked several times - GP surgery and hospital.

At the last appointment the GP laughed when I said 'do you think she needs a scan?'

They must be thinking she's adjusting to her prescription glasses or migraines?

What can be done? I have directly asked about a scan.

I don't know who to trust.

OP posts:
need2findwork · 23/10/2023 12:18

@MyOtherCarIsAPorsche How have they ruled out something 'sinister'. You seem to have had this confirmed a few times. Just struggle to understand how they can rule out certain conditions without undertaking the needed investigations.

Mirabai · 23/10/2023 12:08

What concerns me about “nothing sinister” is that - while it’s most likely true - a responsible doctor wouldn’t make that kind of statement without imaging to back it up. Without imaging it’s impossible to say.

Original poster
MyOtherCarIsAPorsche · 23/10/2023 09:55

Daffodilsandtuplips · 23/10/2023 08:32

GP is right, it should be mum really, unless you’ve got legal guardianship for her you won’t be able to consent to any procedures for her.

GP appointments are like hen's teeth - we have to take what's available or wait until the next lot appointments are released.

I had to wait a further month for an appointment about my new medication because I couldn't attend on one particular day in September.

If mum attended every appointment for her children she wouldn't have time to work. And I don't think her employer is particularly tolerant with regards to appointments as 'they should all be made on her day off' - which is impossible as clinics are on set days.

Grandad had to attend an orthotic appointment the other day with DGD as mum was working and I was having an echocardiogram.

It's hard to juggle commitments and fit appointments in - I'm constantly cancelling/rearranging my own appointments to accommodate everyone else as it is.

I'm worried of becoming ill myself - then it will all fall apart.

OP posts:
FlipFlop1987 · 23/10/2023 09:34

No, Chiari is a rare condition and not something a GP would consider. It would be an EDS consultant like Dr Kazkaz. I’d specifically mention it, show any matching symptoms and ask for an urgent referral. Take a print out of the symptoms of Chiari if it helps

Daffodilsandtuplips · 23/10/2023 08:32

GP is right, it should be mum really, unless you’ve got legal guardianship for her you won’t be able to consent to any procedures for her.

Original poster
MyOtherCarIsAPorsche · 23/10/2023 08:19

She's seen the GP again last Thursday and is now wearing her new prescription glasses.

Again, they've said nothing sinister going on.

She's having times during the day when she goes pale and holds her head in her hands in pain. Then there's times when she's fine.

She's still asking for painkillers during the night but not every night.

The pain is in her eye, going across to her ear and into her jaw. The GP checked her eyes, ears and teeth.

Both GP and optician have said wait for consultant appointment - haven't received a letter yet.

GP also informed me that it should be mum taking her to appointments, not me.

OP posts:
Marcipex · 23/10/2023 00:09

I hope the family have some answers by now.

slapmyarseandcallmemary · 23/10/2023 00:06

How is your DGD OP?

Grmumpy · 17/10/2023 14:52

Is Chiari something a go would be aware of..they obviously can’t know every and if it rare perhaps worth asking about specifically ..presumably an urgent brain scan would show this condition..

VisaWoes · 17/10/2023 05:21

Would the physio have thought of chiari? My daughter said that she explained all the symptoms she'd been having. They were practicing stairs today and hopping backwards/forwards. DGD cannot walk up or downstairs with alternating footing as yet. She doesn't hop, skip, ride a scooter or a bicycle. She cannot run like her peers. Her mum was just the same.

probably not, it’s not very common at all.

Daffidale · 16/10/2023 22:52

I’m so sorry about all your troubles @MyOtherCarIsAPorsche

If your DD doesn’t get any further with GPs the National Migraine Centre offer private consultations . A friend who has disabling migraines recommended them.

https://www.nationalmigrainecentre.org.uk/

National Migraine Centre - specialist migraine clinic

Get expert help: book a consultation now with a leading headache doctor anywhere in the UK. Charity with free factsheets, podcast and help.

https://www.nationalmigrainecentre.org.uk/

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