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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To take laughing toddler to A&E?

401 replies

Hogi · 08/05/2023 09:24

I actually don't know if I'm being unreasonable here. I guess i'm just worried.

I can't remember when it started but my toddler would have random burst of uncontrollable laughter a few times a day for seemly no reason. Nothing was funny and it usually gets a bit worse when he's going to sleep or waking up but we just thought it was a quirk of his because he does have a genetic condition and probably is on the spectrum so we just kind of ignored it because laughing can't be bad?

Over the last 24 hours it's been relentless, it's happening more than it ever has and it kept him awake - it was short bursts of laughter for over an hour and he was getting really agitated.

I googled it and it's saying it maybe something called gelastic seizures - it's rare (but so is he's genetic condition) and the history and his symptoms seem to fit what's happening.

He's again having a few attacks this morning and obviously the doctors aren't open but I'm thinking if a 2 year old is potentially having seizures then maybe we should get him checked out?

I don't know really I don't think he can wait a few days with this going on as it's really affecting him (more than it usually does).

OP posts:
Totalnamechange56 · 08/05/2023 20:25

MyNameIsErinQuin · 08/05/2023 16:15

@Hogi not always. My son has epilepsy and an EEG shows constant abnormal background activity when he’s not having a seizure.

@MyNameIsErinQuin same - I also have constant interictal epileptic activity. They just spike during seizures.

MyNameIsErinQuin · 08/05/2023 20:32

Totalnamechange56 · 08/05/2023 20:25

@MyNameIsErinQuin same - I also have constant interictal epileptic activity. They just spike during seizures.

That’s interesting, I’ve not heard that term before but will look it up.

Hogi · 08/05/2023 20:39

LamentedHelicopter · 08/05/2023 19:47

If they don't need to redo the failed sample is be asking why they took it.
Has he had a seizure since being there, I'd want to stay until that had been witnessed personally (as you say it's now frequent)

I didn't manage to get any on video today as he was on my knee the whole time but I've managed to film one now and watching it back paying attention properly it's kind of scary - he looks totally out of it.

OP posts:
plutoniumum · 08/05/2023 20:41

So sorry to hear this op. I would call 111 and explain the situation. You don't want to leave him unseen for 6-8 weeks.

Hogi · 08/05/2023 20:48

plutoniumum · 08/05/2023 20:41

So sorry to hear this op. I would call 111 and explain the situation. You don't want to leave him unseen for 6-8 weeks.

I'm not sure what to do, he had a couple today but they are quite infrequent during the day but I've just filmed two back to back ones now and I suspect when he goes to bed they'll happen again.

I just hope they don't keep him awake tonight. I wish I could do more for him.

OP posts:
Ionlydrinkondaysendinginy · 08/05/2023 20:53

Hogi · 08/05/2023 20:48

I'm not sure what to do, he had a couple today but they are quite infrequent during the day but I've just filmed two back to back ones now and I suspect when he goes to bed they'll happen again.

I just hope they don't keep him awake tonight. I wish I could do more for him.

Now you have some footage of it happening it might be worth a gp appointment tomorrow to hopefully be fast tracked or given reassurance.

Hogi · 08/05/2023 20:53

I'm gonna ring gp first thing, he's had three back to back in the last half an hour.

OP posts:
Ionlydrinkondaysendinginy · 08/05/2023 20:55

Hogi · 08/05/2023 20:53

I'm gonna ring gp first thing, he's had three back to back in the last half an hour.

Hopefully the gp will be able to help but if your concerned don't think twice about going back to a&e with him tonight

CabernetSauvignon · 08/05/2023 20:56

Can you get your GP to talk to the neurologist about whether he can at least prescribe something to help your child sleep?

raincamepouringdown · 08/05/2023 20:57

I'm shocked they sent him home because a hospital full of trained staff felt you were more equipped than they were to deal with his seizures ... when you don't know what's going on yourself!

stupendous1 · 08/05/2023 20:59

I would ring 111 and explain the situation and say you're concerned about him having to wait so long to be seen

SunnyEgg · 08/05/2023 20:59

Someone needs to view the video

I’d keep pushing

SleepyRich · 08/05/2023 21:01

plutoniumum · 08/05/2023 20:41

So sorry to hear this op. I would call 111 and explain the situation. You don't want to leave him unseen for 6-8 weeks.

I know it's well meaning but what would you expect 111 to do now on top of what's occurred? I don't think it's helpful thing to suggest that the mother is going to just leave him unseen for 6-8 weeks as if it's something that can be changed, especially that calling an unqualified call taker on a help line can resolve!!

They've been to A&E where they were reviewed and basic bloods have been done, now awaiting the specialist neurology review. The Drs in A&E themselves said it was too complex for them to know what the cause was. As people have attested on here unusual neurology conditions take months/years to be correctly diagnosed even when with the specialists.

HowBeOn · 08/05/2023 21:10

Not quite the same but my daughter was referred for suspected infantile spasms and we were sent home from a&e for the same reason, these types of conditions are too complex and need a paediatric neurologist. We were advised to expect to wait a few days for this but we received a phone call the next working day to bring her in as an inpatient in the correct department. Hopefully they get on it as quick for you, does your hospital have in house ped neurology? Agree with getting as many videos as possible.

Poor little mite, sending you all the best and hope you get answers soon:

SleepyRich · 08/05/2023 21:14

stupendous1 · 08/05/2023 20:59

I would ring 111 and explain the situation and say you're concerned about him having to wait so long to be seen

There really must be some misunderstanding about what 111 can do or has the power to do. The absolute limit/maximum they can do for a patient is to request a GP appointment, book a slot at a walk in centre, or arrange for an ambulance to be sent. They cannot refer to a neurology centre and they certainly can't bump you up the list delaying the other awaiting their appointments.

For odd neuro presentations A&E often don;t do more than a GP would (as they'd arrange for outpatient bloods, ecg and then refer to neurology also). There's a lot of pressure for patient flow in hospitals so they'll only keep you if there's a concern its something that could deteriorate rapidly, or they're starting a new medication which needs close monitoring initially.

What should have hopefully happened if that when discharged today the Doctor discussed comprehensive worsening/returning advice so they'd know if/when they should come back.

hamwallet · 08/05/2023 21:14

Honestly OP I'd take him back. Or even to another hospital if you have a couple nearby. I suffer from organic seizures. Mine are caused my cardiac arrhythmia. They aren't psychogenic seizures but they also aren't epilepsy. They're caused my lack of oxygen to the brain when I have my heart problem.

They run an ABG (arterial blood gas) each time I get admitted to check my lactate in my blood. Lactate can present high in blood when having a seizure. They do sometimes do the test in a vein. I don't know if they did this test for your DC as an arterial blood test is very painful. But this could well be what they tested when they did his blood.

One thing that happens shortly after the seizure is starting or finishing, I have laughing fits but if you knew what I looked like when I laugh normally they are very different. It almost looks as if I've been possessed and forced to laugh. It's horrible but I have absolutely no recollection of it at all.

Seizures are serious. If you are worried OP just take him back. Watch out for any vacant seizure activity so for him to look like 'lights are on but no one home' type thing. Seizures don't always look like the typical head and limbs throwing. Mine are more of a tremor / convulsions and my eyes flicker and blink at 100mph.

Good luck OP. I would definitely ask about the lactate In blood. If they did test this and his lactate is normal it's a good sign but of course it cannot rule out lack of oxygen to the brain.

Timeisallwehave · 08/05/2023 21:15

Quickest method of being dealt with is videos sent to paediatrician. They can order an ecg and it’s probably going to be quite quick.

ECG doesn’t always show activity even when there is some. Videoing it is the best thing to do. Document when it happens and I’m sure you’ll hear back very soon.

mumwon · 08/05/2023 21:20

I don't like the sound of 3 back to back... @hamlet speaks from experience, to me this sounds like it is getting worse. Please take little one back

Vallmo47 · 08/05/2023 21:21

I’m sorry you’re going through this Op.

ireallycantthinkofaname · 08/05/2023 21:24

nothing useful to add but glad professionals are involved and trying to help your boy, you must be very worried . this thread has been playing on my mind all day. hope you have answers/a solution asap 💗

2023issucky · 08/05/2023 21:28

I would be straight onto Neuro in the morning. If it is seizures they could be doing damage and he needs sorting asap.
Any chance your under GOSH? They have been great for us and normally pretty quick responding, and we also have a neuro nurse we can call.
Hope he gets some sleep

FlamingoQueen · 08/05/2023 21:30

I don’t have any answers, but wanted to wish you luck and hope you find some answers Flowers

Floralnomad · 08/05/2023 21:31

If he’s had 3 back to back then take him back up to A&E , he needs admitting for observation , I’m not quite sure why he was allowed home earlier .

spottysnail · 08/05/2023 21:31

I would take him straight back to the hospital tbh after 3 in the last 30 minutes. He needs to be monitored.

EwwSprouts · 08/05/2023 21:31

Phone the your paediatrician's secretary in the morning, not the GP. You need your child seeing by an expert asap.