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.

Take her to hospital and demand that they scan her.

Don’t leave until it’s done.
That poor child.

I know you have been reassured by GP and hospital doctors that nothing serious is going on. But she has multiple red flag symptoms. her symptoms are not easing off at all either and you have not has any diagnostic tests. Doctors are not perfect. They make errors too.

you really need to go back to hospital. If you can, attend a different/bigger hospital and refuse to leave without a CT scan. I know you have all a lot going on but that child cannot self advocate. Her mum needs to do that for her. It is nothing but cruel to leave her like that.

I totally agree.

The consultant who saw her made an assessment based on her symptoms at the time. If you return with the symptoms unresolved the whole case will be reassess.

There is no definitive diagnosis as they haven’t done the necessary tests yet.

She has been to the surgery (and ambulanced to hospital) several times.

The last time, I had to take her because mum daren't have any more time off work.

I was 'reprimanded' for taking her and the GP did a huge eye roll after saying that she would refer her to a consultant - because I told her that she had already been referred a week before. The tests done - pushing and pulling the doctors hands, temp, blood pressure, ear check, mouth check, eye check, listening to chest must have reassured them that she's ok.

She's happily drawing pictures now.

She's now eating normally.

No painkillers today so far.

I've no idea how she can appear perfectly normal and then wake up in pain. But we're assured that she's 'safe' waiting for a consultation.

I'll ask mum to ring doctors tomorrow if she's sick again.

WRT other things going on - her youngest son had an eeg Mon to Wed two weeks ago. She had a phone call this week to say that she had to ring and make an urgent appointment for the epilepsy clinic - which is this Monday. So we're expecting a positive result. His routine appointment wasn't until end of January.

The last time we went to that clinic we mentioned that her youngest had a speech and language assessment upcoming in November and that he had leapfrogged his older brother who has been waiting for assessment a year longer and hadn't had a appointment yet. She seemed concerned that both boys have speech delay. We mentioned that there are conditions within the family that are possibly affecting all three children. She said possibly.

It's taking years to muddle through this process.

I'm sorry OP but none of that explains why you haven't taken her with nice guidelines and really pushed for a scan.

I couldn't care less if I was reprimanded and whatever is happening with anything else, is, just now, irrelevant.

She has been to the surgery (and ambulanced to hospital) several times.

Could you just talk us through the timeline of this.

• She’s been to the GP surgery several times with this.
• And was once ambulanced to hospital where she saw a consultant paediatrician?

Is that correct?

You can click "see all" on the OP's post and you'll find the timeline.

I don’t mean the timeline of the thread, I know how to “see all”, and I’ve read it from the start anyway. I mean a quick summary of the timeline of events, who GD saw when.

@Mirabai
MyOtherCarIsAPorsche · 12/10/2023 21:53

~She's been having headaches regularly this year.
~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.
~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.
~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.

MyOtherCarIsAPorsche · 12/10/2023 22:32
~Mum rang optician yesterday and they compared scans from June and September, which they said were healthy.
But eyelid has drooped this evening.

MyOtherCarIsAPorsche · 12/10/2023 22:50
~111 are sending ambulance

and it goes on, and on, and on. How much of a timeline do you need??

I remain surprised that the medical team hasn't requested a scan. I would have done.

Just read through your thread OP. I’m so sorry you’re going through this. Your an excellent grandmother!!

Just two things to suggest but they may have already been suggested so apologies if so.

1. Have you guys considered just paying privately for an MRI? I know it’s expensive but it’ll cut out all this waiting around if it is something sinister and give you all peace of mind.

2. Not to sound goady/rude or anything, but is there any chance that your dgd is maybe exaggerating things? Maybe she did have a terrible headache for a few a days but then as a result of that got tons of attention from everyone so has prolonged this headache? From what you’re saying of her siblings, they have health issues which demands a lot of attention. So she may have felt ‘overlooked’ or sidelined before as her siblings got a lot of attention from family, mum and professionals. Now her having a prologoned headache is having that attention need met. If you see what I mean? Especially as it’s at night or in the mornings, when she is least distracted so maybe then ‘remembers’.
   That may sound insensitive and it doesn’t mean to read that way. I just know that siblings of disabled children can often be emotionally starved of attention unintentionally due to the needs of their siblings so can demonstrate their need for attention in different ways. Apologies if that reads coldly, it doesn’t mean too x

She seems to have had headaches since the start of the year. Possibly two longer headaches which sent us to the GP for the first time in May(ish).

She saw the GP in May, July, August - all headaches which have lasted for several days. Had new glasses June, September, October (which I find odd). The prescription magnifies her eyes quite a bit. (+3.5)

This is the longest bout of non stop headache/eye pain - possibly day 28 or 29? Her eye lid droops on and off. She feels sick and dizzy on a morning. Today is the first time she's actually been sick - even though she hadn't had any breakfast.

This headache started early October - I've taken her twice (before and after hospital visit) to GP in October, mum once. She went to hospital in ambulance the first time her eyelid drooped and was seen in A&E.

When she went home this evening I could tell the pain was back as she was as white as a sheet.

She rarely complains but you can tell by her behaviour when she's at her worst. She describes the pain when asked. She doesn't like telling anyone because she hates the taste of any/all liquid pain killers - they make her gag and it's quite distressing for her to take them. When a doctor asks her a question she minimises her symptoms.

She was hysterical when being sick today. Even though I was sat with my arm around her. This is a typical reaction. She tends to overreact to lots of situations - she's on the list to be assessed for autism.

She was hysterical when the ambulance turned up - she asked if she was dying.

She's hysterical if a dog approaches her/walks past - she's ran into busy roads more than a few times to get away from them.

She's hysterical when anyone touches her belongings - anyone. I often cannot use my dining room table if she has left any of her belongings on it as it's too much fuss to risk another one of her 'nuclear reactions'.

She cannot have children from school around at her house/my house because she upsets them if they touch anything of hers - this includes her birthdays.

She does not have friends at school. She used to walk around the perimeter of the playground alone at breaks until the SENCO allowed her to go to 'the hive' at break times. She's allowed to take someone with her but the only time she has a 'volunteer' is when it's wet playtime.

The school noticed that she was 'quirky' (their words) when she started at the nursery aged 3. When she speaks to people who are not close family, she speaks in a baby voice. She overthinks. She's anxious. She spends a lot of time worrying. When her brother has seizures she becomes hysterical. Neighbours offer to take her until I can get to her house in these situations so that she doesn't see the aftermath. (He can appear unconscious and foam at the mouth for a while afterwards.)

She is obsessed with Harry Potter books and can recite chunks of text back. She's always been able to remember books and poems by heart. She is always asking very deep questions. She draws very detailed pictures. She's intense and delightful. She hates not being good at something which puts her off attempting new things.

It's complex.

I was starting to think it was a monthly hormonal thing until this last headache started.

Re the opticians. My partner went to the opticians for a routine check up and found in a year his vision had gone up by +2 from +3 to +5.
Perturbed he got another appointment with a different optician who came up with a number somewhere in the middle. The second optician said to a small degree a stronger position will make things clearer sometimes its hard to tell where the prescription is because the better/worse answer is blurry (no pun intended). He has kept with the lower prescription for a couple of eye tests since.

@Lougle As indicated by the quote I responded to - the medical timeline only - GP, hospital visits.

@Sugarcoatedcandycane

I completely agree that she could be manipulating her symptoms - it's certainly a possibility. We have thought about it and it's absolutely not offensive/cold/insensitive because children can make things up.

She can't fake being sick - the panic today was genuine, drooping eyelid, her glasses prescription, the wincing which we see when she walks/bends over, tripping and falling, pallor, lack of appetite - because all of that does not appear to be 'put on'.

I'm absolutely torn - it could be migraines, cluster headaches, something related to POTs - she's hypermobile. All of these things are within the family.

Her youngest brother does get an awful lot of attention because his condition is worsening as he gets older. Her other brother who is almost 4 cannot speak intelligibly. The three of them are possibly ND. I really feel for my daughter who is alone for the majority of her time. She doesn't want to make a nuisance of herself for fear of being labelled with a 'proxy' condition.

She thinks, even if we investigate a private scan she will still be labelled as an unfit mother as she's questioning a diagnosis.

@Superscientist

I also question the eye test.

How on earth did she ever read if she was that bad?

I'm +1.75 and I can't read without my glasses.

I've wondered whether the prescription is too strong and causing eye pain?

Thanks very much OP, very helpful.

So in summary:

She’s seen the GP about the October headache 3 x in total.
She’s been to the hospital in York once.
And 3 sets of glasses since June.

The paediatrician who said the drooping eyelid had ‘self-resolved’ (it hasn’t, it’s recurring) were they at the hospital? You haven’t had a separate paed appt? The paed she’s been referred to is in 3 months?

My advice would be the same as it was before either a. Make a private appt with a paediatrician or b. Go back to the hospital on the basis that symptoms have not resolved and she needs a scan.

She thinks, even if we investigate a private scan she will still be labelled as an unfit mother as she's questioning a diagnosis.

Doctors question diagnoses all the time. Why can’t she?

Sometimes with children they increase the glasses prescription incrementally especially as children can compensate for long sightedness better than adults. I think DS2 prescription started around +2 and eventually ended up at +6.5 where it has stayed for years.
He was under the supervision of a hospital ophthalmology department as he was at risk of a lazy eye and the gradually increasing prescription seemed to be the usual route.
We didn’t even realise how bad his vision was until he had his eyes tested because his older brother was.

@Mirabai

What a saga.

I was hoping this week off school would give her a chance to completely relax and things would settle. But unfortunately the vomiting this morning did ring an alarm bell. No one else in the family has been sick so don't think it's a 'bug'.

She doesn't particularly like school; she's becoming more and more aware that her peers have strong, established friendships and she doesn't.

She's been teased recently because the glasses she's chosen don't particularly suit her and she's been called names.

Her most concerning symptom is the drooping eyelid. Surely she can't 'control' that? Although, I have seen lots of children complaining of headaches/stomach pain as an excuse to get out of things - mainly P.E. (Ex primary school teacher.). Not necessarily as young as year 3 though.

Her trips and falls worry her mother as that's quite a recent thing - but mum tripped and fell quite a lot when that age, she still does come to think of it. So that's history repeating itself for me.

As a dear friend (teaching assistant) used to say - my head is a shed with it all.

@ChazsBrilliantAttitude

I'm in two minds about the glasses.

They could be too strong or not strong enough - because she still has eye pain.

When she doesn't have the glasses on her eyes look 'weak' or possibly lazy. She has to wear them all the time.

She didn't wear glasses at all when the headaches started.

Could be related to the glasses then?

Her eyes looking “weak” “lazy” - have they always been like that?

A squint/strabismus can cause double vision.

If the headaches started before the glasses then there is no obvious reason to assume the glasses are an issue. You could double check when she will reach her full prescription if she hasn’t done already.
You could also ask about muscle tone around the eyes if the look lax.

Apologies if it's stupid or already been said but since you have done so many checks with doctors etc could you get a dentist to check her out. I know the doctor looked at her teeth but they are not dentists. For example if you have an absess in your top gum your face can swell and your eye can shut because the inside of your mouth is swollen. The dentist can also check her throat. Since throats are connected to ears and noses there could be a connection. Ear problems can make you dizzy and feel sick. Maybe a daft idea but I'm always amazed what my dentist does - checking lymph nodes etc. It can't hurt and it would be something else crossed off. Best of luck to you and your family

OP I can’t believe what I’m reading on this thread and what you are all going through. I pray you can get a scan for your dgd soon, poor angel.