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.

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

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.

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.

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.

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!

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

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?

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.

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.

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/

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.

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..

How is your DGD OP?

I hope the family have some answers by now.

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.

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.

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

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.

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.

@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.

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.

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.

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.

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.

@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