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.

@Mirabai

Lazy eye?

Would optician have said?

Hard to tell from the pic but it looks like the left eye has a convergent squint.

Well my mother went to her excellent optician 3 times with double vision, he couldn’t find anything wrong with her eyes, sent her to hospital, they couldn’t find anything.

I pointed out she had a serious squint and took her to Moorfields and they say - oh yes strabismus and they’re adding a special lens to her glasses to help.

Has DH always had one pupil larger than the other?

Ambylopia (lazy eye) and strabismus (crossed eyes) are slightly different.

But amblyopia tends to develop due to strabismus.

@Mirabai

My granddaughter doesn't have one pupil bigger than the other usually - no.

The bigger pupil is the eye that she said wasn't hurting. It happens when the right eyelid droops.

Do you think the right eye pain is something to do with the left eye?

It's the right eyelid which droops.

Would the optician say she had a squint? What's the treatment for squints?

My (D)H doesn't have one pupil bigger than the other but then again I can't remember the last time I looked that closely 😬

I will ask if she sees double. She has said she can't see the board in class. She reads normally at first and then tires quickly and starts missing words out altogether. Despite this she has excellent comprehension. She frequently makes her own anagrams from words - 'left' becomes 'felt' for example. Her mum is extremely dyslexic.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3562350/#:~:text=Ophthalmoplegic%20migraine%20is%20a%20rare,ptosis%20can%20also%20be%20observed.

Ophthalamoplegic migraine ( cranial neuralgia)

starts in kids, vomiting a feature

‘’Ophthalmoplegic migraine is a rare neurologic syndrome characterized by recurrent bouts of head pain and ophthalmoplegia. The third cranial nerve is most commonly affected, in which case mydriasis and ptosis can also be observed. Most patients recover completely within days to weeks, but a minority are left with persistent neurologic deficits. The disorder usually presents in children, but can persist in adulthood or persist into adulthood.2–4 Ophthalmoplegic migraine is entirely distinct from migraine with visual aura, in which patients experience transient visual phenomena before, during, or after the onset of migrainous headache.’’

My point was essentially that you’d think an optician would pick up on a squint, but my mother’s very experienced optician and Chelsea & Westminster ophthalmic dept failed to. I think they were so intent on looking into her eyes for the cause of double vision that they failed to stand back and look at them. (This was very recently btw)

In your case DG’s optician may have clocked it but not mentioned it nonetheless, because they don’t always cause vision problems and my niece’s self-resolved over time.

Treatment includes eye exercises, surgery to tighten the eye muscles so they align correctly. My mother was offered Botox injection to freeze the eye muscles but I don’t know if that’s offered to kids. She also has been prescribed some special prism lenses - but don’t know if they work yet as she’s not picked them up yet.

All this is rather by the by. The matter at hand is a month long migraine - with red flags for a brain tumour. Migraine should not be given as official diagnosis until full tests have been carried out and worst case scenario has been eliminated.

@MyOtherCarIsAPorsche I've read your thread from the start but not commented. I’m a lifelong migraine sufferer and my symptoms were identified as soon as I became verbal - so, very early indeed. I had 'classic' one-sided migraines throughout my whole childhood and adolescence but thankfully they tapered off in young adulthood, only to reappear around menopause in a different form, unfortunately. So I still have them after 60+ years.

I know you’ve had a lot of good and expert advice on this thread but I would highly recommend at least reading the guidance of the National Migraine Centre (fact sheet attached about migraine in children). They are the experts in this awful condition and I’ve consulted them. All their doctors are specialists and I’ve never spoken to any other doctor who 'got' what I was suffering from so completely and instantly. You could take DGD to see them with no judgment from any other medical professional and they would be able to offer a view on what exactly is happening. I honestly think that a 28-day headache in a 7-year old is very worrying and should be explored more urgently.

You do have to make a set 'donation' for their services as they are a charity. They’re in London but I believe they can do remote consultations now.

Best of luck. It sounds like a very concerning situation for you all, on top of your already-considerable worries.

Mum has just gone home from work and has had a letter for DGD's appointment.

It's 15th Nov.

Not long to wait.

It's a full day trip out though - miles away.

That's great news @MyOtherCarIsAPorsche .

That’s fantastic!

Great 👍

Very good news @MyOtherCarIsAPorsche

Great news you must be counting the minutes. I'd definitely go with a list of what you want answers to.

Btw did anyone mention hemacrania? My mother had it a few years ago, it was one-sided headache, involved the different pupil size and the drooping eyelid. It was episodic during the day and was treated with a specific NSAID, can’t remember which.

@Mirabai

I had a look - she has a couple of those symptoms. Contracted pupil and drooped eyelid.

The eye with most pain has a smaller pupil which (obviously) makes the other pupil look dilated.

When the headache eases the eye pain continues.

I'm going to write down a timeline of symptoms for my daughter - she thinks that she doesn't get taken seriously when she speaks to doctors, so she likes me to go with her. Unfortunately, I'm unable to get out of a commitment on the day of DGD's appointment.

We've unexpectedly been called in to see a consultant for DGS who has been having seizures (today). He had an EEG for a few days two weeks ago - we think that something has shown up on the results. Hopefully, the news is not too bad - but I can't sleep for thinking about it.

I'm worried sick for my grandchildren and worried sick for their mum.

My heart has a very different rhythm tonight. It's beating out of my chest and feels like its erratic and stopping/starting. I feel dreadful - can't even begin to think what my daughter feels like.

Go ASAP

Little update.

DGD has been to a hospital 2 hrs away.

Consultant was very thorough. DGD would not speak to anyone and would not let the consultant touch her.

She's now waiting for an MRI scan and to see the hospital optician.

In the meantime she has to make an appointment to see her local optician to get her glasses prescription checked.

She had a blood test. I don't think mum would've been able to drag her there if she'd have known she was going to have one. Four people had to help to hold her down/still while the consultant took the sample. She screamed the place down.

Mum said she felt like papa elf, when elf was sat on his knee.

The consultant is also trying to get her autism assessment expedited now.

That's progress @MyOtherCarIsAPorsche . Sorry she had to be held down for the bloods. A necessary evil.

Symptom update.

Day 42 of headache/eye pain.

Her eyelid feels like it is not opening/closing properly - it actually is but I thinks she's describing it feeling harder/heavier to open and close her eye.

"She's now waiting for an MRI scan" Thank goodness for that.

Did they give you a timescale for the MRI? Given her difficulties with the blood test, is she being given a GA?

No - there's no timescale been mentioned. DGD's brother, who is 3 years old tomorrow, waited three months for his MRI with GA and it was cancelled on the day twice.

Consultant said she'd need to be 'sedated'.

Her brother was diagnosed with epilepsy last week. He's been on Keppra for a week and his seizures have increased ten fold and his behaviour is shocking. My daughter rang the epilepsy nurse and she was told to keep to the drug schedule. I'm speechless - when we try to prevent him from hurting himself he turns on whoever's trying to keep him safe. It's like a colossal storm going on in his head. Heartbreaking.

She’s finally getting a scan! I note the consultant does not seem to have speculated as to diagnosis prior to scan results.

I'm so relieved your DGD is getting a scan finally! I hope you all get the answers you so desperately need!!
I'm so sorry your DGS is suffering so much on his new medication. Could you ask for an appointment with the epilepsy consultant?