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AIBU?

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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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13
Original poster
MyOtherCarIsAPorsche · 16/10/2023 22:22

Both daughters have hEDS - younger daughter has POTS, older daughter has some form of autonomic dysfunction - she had a ecg recently as she's been having chest pain and has been referred to a consultant. The chest pain can be brought on if she eats a larger meal. There are so many hernia operations in the family, I've lost count. When the first hernia is repaired, it pulls another hernia alongside and there are further problems with excess scar tissue.

Apparently my husband would have been operated on more quickly if we had have mentioned EDS - but that is one of the first things I mentioned in the resus room at the hospital.

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.

Her paediatrician said it was too early to make a diagnosis of hEDS - she didn't need the label. I said that her mother could have made use of that label before her tonsillectomy and hernia surgeries. Both daughters were diagnosed mid twenties - Dr Kazkaz, London.

OP posts:
Mirabai · 16/10/2023 22:21

Btw if DD would fork out for a private paediatric neurologist appt with someone who does NHS work at the local hospital, they could refer her over to their NHS practice if necessary. And if a consultant refers her - no-one can accuse her of neurosis.

Mirabai · 16/10/2023 22:16

I have AI illness + POTS, EDS, migraines blah blah. I still never had a 10 day migraine at the age of 7.

I understand you’re in a very difficult position OP. And I really hope this is a severe migraine.

I guess I don’t really understand the risk DD is running for the sake of the good opinion of the hospital. Surely DGD is more important than that?

VisaWoes · 16/10/2023 21:11

Totally agree with FlipFlop. EDS can run in families, as can POTs.

FlipFlop1987 · 16/10/2023 20:57

I haven’t read everyone’s responses, just your own updates. Have the family all been assessed and diagnosed for EDS? Your H’s aortic dissection, the ASD, hypermobile, POTS etc. One comorbidity of EDS is Chairi Malformation, this is extreme pressure at the base of skull which fits with the headaches and when your GD looked up at the top shelf.

https://www.nhs.uk/conditions/chiari-malformation/

again apologies if this has all been mentioned in the thread previously!

nhs.uk

Chiari malformation

Find out what a Chiari malformation is, what problems it may cause, why it happens and how it can be treated.

https://www.nhs.uk/conditions/chiari-malformation/

Lougle · 16/10/2023 20:50

I think it's probably worth mentioning that @MyOtherCarIsAPorsche , although a wonderful grandmother, does not have parental responsibility for her GD. If she's passed the information on and her DD is unable or unwilling to return to the hospital, then she has no control over that.

Ultimately, if there is anything sinister, it will escalate to the point that there will be no question of whether hospital is needed. Until that point, @MyOtherCarIsAPorsche can only support her DD in the care of all the children.

nocoolnamesleft · 16/10/2023 20:33

Don't believe us. Believe the Headsmart symptom checker:

Better safe than tumour - Signs and Symptoms

Yes, the most likely diagnosis is hemiplegic migraine. But there are enough red flags that this should not be diagnosed without organising a head scan.

Better Safe Than Tumour

Check the signs and symptoms of a Brain Tumour. Early Diagnosis leads to faster treatment.

https://bettersafethantumour.com/

SofiaAmes · 16/10/2023 20:32

Hypermobility and migraines are genetically linked. Please look up Mitoaction.org and umdf.org for information about mitochondrial diseases. It's very likely that all her children are experiencing some version of mitochondrial dysfunction.
And she's not imagining that they will flag her for having kids who are sick all the time. I have one child with mitochondrial symptoms and got flagged for going to the emergency room a lot. It was a constant problem (including veiled and not so veiled threats of a Munchausen by Proxy label) until he was formally diagnosed at age 11. Luckily the genetic testing is much more available now and it's a much more known disease.

DyslexicPoster · 16/10/2023 20:29

Your poor dd. It's hard when your child is often at hospital

StopLickingTheDog · 16/10/2023 20:19

Your granddaughter has several new red flag symptoms since she was last assessed. Medics aren't infallible, they get things wrong. Your daughter is more likely to have intervention if she doesn't seek medical support when needed, regardless of how logistically difficult it may be.

Your poor granddaughter needs to be reassessed

Poppsidoppsi · 16/10/2023 19:28

@MyOtherCarIsAPorsche, no one will think badly of your daughter if you take your granddaughter to A&E. You need to
get that poor child seen again and get her head scanned. I can’t imagine my hospital turning away a child who is in so much pain, and being so dismissive with a guessed diagnosis. So many people here are concerned for her. This cannot be normal. Your poor granddaughter is suffering and that is more important than your daughter’s reputation. Please take that child in.

SqueakyRadish · 16/10/2023 19:25

That's a tough situation. Unfortunately I do know parents who have been accused of FII so I can understand your daughter's concerns.

I really hope that you get some answers soon and that DGD feels better

Original poster
MyOtherCarIsAPorsche · 16/10/2023 19:09

Nothing to update unfortunately.

Lost WiFi connection at our static caravan - it's remote.

Just got home from visiting DGD - straight from oop north.

Even though I have mentioned the term 'brain tumour' my daughter thinks it is 'just a migraine'. She says that DGD is behaving normally when the painkiller kicks in and a little quiet when it wears off. She hasn't been sick again. Her eyelid hasn't drooped again. But she still wakes earlier than usual with headache.

She still has eye pain - she covers the whole of her eye when asked where the pain is. She added that there's a line of pain from her eye to her ear, which is new. There is pain at the top, front of her head. She feels a little bit dizzy and a little bit sick. She's been to school. Mum said she looked very pale when she picked her up because school had not given calpol at lunch and DGD didn't ask for any (she wouldn't). So again, the headache was making her wince walking home.

Her mum rang the GP at 8am - the doctor rang her back and did not seem concerned about the symptoms - the appointment is Thursday. This is day 12 of headache without a break.

DGD asked 'when will this stop nana?'

Daughter is worried about going back to hospital as she's there quite often (with her sons). There have been a lot of emergencies and ambulances called this year for her youngest and she's paranoid that someone will think that she has a fixation on her children being ill. She's convinced that the hospital are keeping a tally of the visits.

It's unfortunate that all three children have problems. DGD was at physio this morning because she is hypermobile and has frequent leg pain. She was upset because she's not been able to do many of the exercises due to her pain. She is back to our local hospital on Wednesday for new shoe orthotics.

Mum thinks that she's being a nuisance because of all the visits. She was at the main hospital at lunchtime for her youngest to have eeg wires fitted - when she went to pick her other two children up from school a yr 6 boy shouted 'OMG he's got a bomb strapped to his back' - the wires go into a small rucksack which is strapped to his back so that he can't take it off.

I asked if she wanted me to nip DGD to A&E - to be on the safe side. She said 'mother they're going to end up taking my children away from me if I can't accept their diagnosis - they'll think I'm crazy'.

So, I'm trying to justify my daughter's behaviour. I can't justify mine. DGD looks under par. Her eyes look tired and weak. Im hoping it's migraine, although I know mine have never lasted this long.

OP posts:
icelolly99 · 15/10/2023 23:36

@MyOtherCarIsAPorsche I followed your posts about your struggles with your husbands health issues and the ongoing manifestation of his personality change and everything else including your dd and gdd's problems . I'm so sorry that you have something else to deal with now. I hope and pray your dd gets the medical response necessary and for your continued resilience with all this and everything else 🙏

VitoCorleoneOfMNMafia · 15/10/2023 20:42

Reminder that this isn't a soap opera, it's someone's real life, and the OP doesn't owe us updates.

Newuser75 · 15/10/2023 20:31

@amusedbush thank you very much. That's so helpful!

Herecomesdehotstepper · 15/10/2023 19:46

Hoping the silence from OP means that action is now being taken to support this LG.

KidsDr · 15/10/2023 16:42

I think an eye hospital would refer this into a general hospital as needed but I really don't base that in direct experience - I haven't worked in eye hospitals. Ophthalmologists will be experienced in the crossover between opthalmological and neurological diagnoses and I would expect them to have a good awareness of neurological differentials (some signs of which can present in an eye examination).

It's not a bad idea to think about ophthalmology differentials, likewise the general hospital may involve an ophthalmologist though it does sound as though they did this the last time? Depending on the comprehensiveness of the previous eye examination it seems unlikely a new serious eye problem has developed to account for the new/ progressive symptoms.

I don't like to comment too strongly on management of a child who I obviously have not seen or be involved with, but if this was my child I would definitely seek same day re-assessment (this is completely reasonable despite the recent assessment as the situation has persisted and worsened) and I would want to very clearly understand the rationale for not following guidance on brain imaging. Hopefully it is nothing sinister nevertheless a cautious approach is the right approach with children and possible brain tumour. Have seen it go wrong.

Poppsidoppsi · 15/10/2023 14:39

Any update, @MyOtherCarIsAPorsche? Hoping you were able to get your GD to A&E and get some answers. Please don’t leave her to suffer any further without a scan.

rebeccaxxxx · 15/10/2023 11:38

Here is their list of what is classed as an emergency:
Eye Emergency List

ETA: I would probably defer to the dr that has joined the thread if they think it's regular a&e not eye a&e that's needed.

Emergency - Manchester Royal Eye Hospital

Patients are kindly asked to consider whether their eye problem is an emergency and whether Manchester Royal Eye Hospital is the closest emergency service before attending.

https://mft.nhs.uk/royal-eye/services/emergency/

Daffidale · 15/10/2023 11:37

Just sending all the love and hugs in the world.

rebeccaxxxx · 15/10/2023 11:35

Yes please go to manchester eye hospital they are much more likely to figure it out and are next door to manchester royal and children's if they think you need those specialists. They are very good. And if she goes with everyone as she has no childcare she will just get seen more quickly, I used to have to take my baby with me and they always took pity on me. Also, I had all the symptoms you are describing with uveitis and no red eye. By the time they go red it's much more severe. It may not be uveitis of course but I think those specialists will be able to figure it out much more quickly .

Mirabai · 15/10/2023 10:12

KidsDr · 15/10/2023 08:18

I don't know how to state it more clearly. She has new progressive symptoms that are alarming (eg falls and visual changes). Furthermore the symptoms that were present when she was last seen have not resolved but are still present (worse?) several days later. These things change what management is appropriate. The advice you were given is now out of date.

She needs to be re-assessed and may need an inpatient scan for safety. Not an MRI now (unless it happens to be available), but a CT now then possibly an MRI later. This can only happen on the NHS. Call 111 today. Now. Or simply go to AE. Time to stop engaging with this thread and get a move on, in real life.

An urgent / inpatient CT will happen same or next day. At age 7 MRI is not usually done under GA, that would be exceptional. Can be arranged for days/weeks usually. Please don't go on information you get here, so much of which is wrong. Take her to be reassessed. This is my day job and I would scan her same day unless you are substantially misrepresenting her symptoms.

Edited

Please listen to this OP and her previous post.

DD shouldn’t waste time with a walk in centre as they simply send her to A&E.

Either DD needs to ask other DD to mind the kids or ask a kindly friend/neighbour to help out.

Ifyoulikealotofchocolateonyourbiscuit · 15/10/2023 09:52

I echo the advice of going to Manchester and going asap

MotherEarthisaTerf · 15/10/2023 09:47

To be honest I would drive to Manchester it’s not so far away.

present to the Eye Hospital A&E. they’re attached to Manchester children’s hospital if she would need to be admitted.

they are extraordinarily dedicated, excellent with children, thorough etc.