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Original poster

Onset of seizures in 6 year old - urgent care or GP?

26 replies

Vinvertebrate · 17/05/2023 13:53

Hi all

It's another GP moan I am afraid...

My profoundly autistic DS6 has started having absences and seizures. He had a biggie at school the other day and when they told me (and gave me a lesson in seizures 101) I realised that he has quite frequent absences that are getting worse. I had put his "spacecakes" expressions and vacant stares down to autism, but I have since noticed that his eyes flicker and roll back in his head when they are happening.

Aware I sound like a shit parent btw - he has lots of funny mannerisms and foibles with his ASC and I put it down to one of those.

I called my sister who also has a DS with ASC and she said that her DS had been checked for epilepsy when diagnosed with autism because there is such a strong correlation. Good old NHS GP never told me about the link or suggested he get tested, so I filled in an e-consult explaining about this prolonged seizure at school and they responded 5 days later with an appointment in 3 weeks.

It's not AIBU but I wonder whether he should be seen more quickly or even if this is an A&E job. My GP surgery is in the "mildly useless" category although until now had been pretty good with DC.

What would MN do? Complain and try to get him seen earlier, or suck it up?

OP posts:
cyncope · 17/05/2023 13:57

I would have taken him to a&e when he had a prolonged seizure at school rather than filling in an online form.

Could you ring 111 for advice?

Sarahtm35 · 17/05/2023 13:58

My daughter started developing nocturnal grand mal seizures during covid lockdown. She has brain damage due to undiagnosed metabolic disorder as a newborn.
it’s been 3 years and we’ve only just got her an appointment for testing (eeg)
they discharged her in 2020 saying they didn’t believe she had it and expected me to film them. But of course I’ve never been able to do this because it’s always during the night and I’ve been more busy trying to keep her alive.
you’re not a bad mum, it’s just one of those tricky conditions that takes ages to diagnose and taken seriously.
if he has any prolonged seizures definitely a&e but until then just try and make a diary of events, film if you can and take care of him. I doubt with the way things are he’ll be seen any sooner unless it’s an emergency life or death situation. Also if he has a paediatrician make sure you tell them too. We’ve never seen gp but got eeg testing through paediatrician.

NanFlanders · 17/05/2023 13:58

I'd second a call to 111.

Interested in this thread?

Then you might like threads about these subjects:

6 year olds Children's health General health
bakebeans · 17/05/2023 13:59

Seizures in a child would be a&e as this is classed as an emergency

endofthelinefinally · 17/05/2023 14:03

It sounds as if his seizures are getting longer and more frequent. If that is the case I think 3 weeks is too long, so yes, ring the surgery and tell them. I am sorry, I know that for many people that is an impossible thing to achieve.
IME, if you can email the surgery or hand deliver a letter (write "delivered by hand" and the date and time on the front of the envelope) that is written communication and it has to be given to the GP to read.
I strongly recommend that you keep your phone handy and video any episodes that you witness.

blackwingedstilt · 17/05/2023 14:03

Sympathy OP, one of my DC had absence seizures in childhood and it was the school that spotted it - I'd noticed but thought they were just playing around. (No autism though.)

If it's "just" absences it's not an A&E job, but a 3 week wait just for the GP is ridiculous. My DC was referred by GP to neurologist and after a couple of months' wait, by which time they were having several absences of up to half a minute per hour, was put on medication which worked completely (though there were side-effects).

Original poster
Vinvertebrate · 17/05/2023 14:03

I don't really know why I just filled in the form really. I think it was because the school nurse was quite matter-of-fact about it. They hadn't sent him home or anything and just expressed surprise that I hadn't noticed the absences, because they had.

It seems pretty unanimous so far that 3 weeks' wait is too long so I will complain to the Practice Manager about the wait (and in fact about the 5 day wait for a response!)

OP posts:
endofthelinefinally · 17/05/2023 14:04

Agree with pp that if he has a long seizure then yes A&E is the right call.

blackwingedstilt · 17/05/2023 14:06

Sorry I skimmed the OP too quickly, just seen there was also a prolonged seizure, we were advised to call an ambulance for a first tonic-clonic /grand mal type seizure, should this occur. I would at least call 111.

Movingtodevon · 17/05/2023 14:08

He should’ve been to an and e at the first seiszure. I would insist on gp appointment today or take him to an and e if not possible if these are his first ever seizures.

SisterAgatha · 17/05/2023 14:12

A&E, there are not “just” absense seizures, there are simple partials affecting half the brain which may look like absenses and can easily progress in to tonic clonic. No lay person ie school can know that just from looking. GP’s are often unsure also as it is not their specialism.

Any prolonged seizure has the risk to turn in to Status epilepticus which is a medical emergency. The A&E visits sped up my neurology referrals.

Original poster
Vinvertebrate · 17/05/2023 14:14

It just seemed a bit OTT to sit in A&E for 20 hours when he was bouncing around and fine, and the school nurse was so ambivalent. It was only in the days after the prolonged seizure that I even realised what the zoning-out was - he's not the best at responding to his name so I thought nothing of it until I noticed the weird eye movements going on.

I am on hold to the GP which is a recorded message inviting me to hold but preferably FO and bother someone else 🙄

OP posts:
SisterAgatha · 17/05/2023 14:14

Also if this is his first seizure then 2 weeks are the guidelines to see a neurologist but I had to chase mine with PALS so you may have to put up a bit of a fight. Going to A&E really speeds that up as you may see someone on the day.

SisterAgatha · 17/05/2023 14:20

All a GP will do is refer you to a Neurologist. You’ll wait 3 weeks for the appt for that and then (best case scenario) 2 weeks to see the neurologist. You’ve been badly advised by the school imo.

I know it’s 20 hours in a&e etc but the other option is waiting months for a referral. You absolutely need a proper checking out after a big one.

cestlavielife · 17/05/2023 14:31

Is he under a paediatrician / child development centre ?
Neuro is might be tertiary referral i e paed first
Insist on urgent (paed +) neuro referral
If further seizure straight to a and e

Bramshott · 17/05/2023 14:35

Does the GP even need to see you, can't they just refer straight on to the neurologist? My DD has been referred straight on without being seen, having described her symptoms in an e-consult.

Original poster
Vinvertebrate · 17/05/2023 14:39

He is under a pediatrician but currently 6 months' late for his 6-monthly appointment, so not much hope there.

I asked the GP for a direct referral and referred to the NICE guidelines helpfully mentioned by a PP - he's now being seen at 10am tomorrow. I will insist on a neurology referral.

Will definitely take him to A&E if he has another one before then.

OP posts:
SmellyNelliey · 17/05/2023 14:42

I'm epileptic and my first seizure was in hospital luckily...but 999 should of been rang at childs first seizure...I'm now on medication and anything after 5 mins is an emergency and 999 should be rang for me.
I'd ring 111 and get some advice and go from there 3 weeks is to long to wait. If anymore seizures happen 999 to be called or straight to a&e.

SisterAgatha · 17/05/2023 14:47

That’s really good OP, well done. I hope they get your boy seen quickly. I was lucky and didn’t wait long for my EEG/MRI etc but I have a family history which made it more urgent.

Lots of children grow out of epilepsy, there are so many factors in play. What I’d do now is start making a little diary of what he’s eaten, times, when does he go to sleep or wake up, so you can look for patterns or triggers. The neurologist will defo ask what happened in the lead up.

SisterAgatha · 17/05/2023 14:47

Also if you are using any essential oils or tea tree shampoos etc x

otherusername · 17/05/2023 15:06

I'm really surprised the school didn't call an ambulance for a child who doesn't have epilepsy having a full seizure!

Original poster
Vinvertebrate · 17/05/2023 16:24

I’m not sure why they weren’t more alarmed tbh - apparently he was quite distressed and had spilt paint but couldn’t recall anything… mind you the GP couldn’t have been less concerned either!

OP posts:
SisterAgatha · 17/05/2023 17:56

They weren’t concerned probably because he wasn’t presenting with a typical tonic clonic seizure which is the only one people seem to know. Some understand absenses but there are over 50 seizure types and not all of them even involve a loss of consciousness. Im fully awake and able to converse in my seizures… until I’m not and I’m on the floor.

I’d recommend they have some training tbh.

Original poster
Vinvertebrate · 18/05/2023 07:32

Thanks for all the helpful advice - GP this morning so let’s see what happens.

OP posts:
Original poster
Vinvertebrate · 18/05/2023 11:33

Urgent referral to neurology! He should be seen within 2 weeks ie before the original bloody GP appointment! No idea how that works, but I’m pleased they’re taking it seriously and grateful for all the advice. X

OP posts:
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