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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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:
uncomfortablydumb53 · 11/05/2023 14:15

Another one thinking of you todayFlowers

Frazzled1502 · 11/05/2023 17:25

OP - I hope ds has had his mri and you have some answers. Hospital stays are exhausting without the added worry and confusion on top

Original poster
Hogi · 11/05/2023 19:04

Just to update DS has been discharged. They believe they are atypical absent seizures. He has his EEG booked for the first week of June and the MRI before that and then we have a follow up with the consultant paediatrician who specialises in epilepsy.

We just need to monitor and record in the meantime.

Thank you so much for the support everyone. It means a lot x

OP posts:
Floralnomad · 11/05/2023 19:08

That’s not too long to wait , hope he’s not too bad in the meantime

Willmafrockfit · 11/05/2023 19:17

best wishes Flowers

Cuwins · 11/05/2023 19:46

Hogi · 11/05/2023 19:04

Just to update DS has been discharged. They believe they are atypical absent seizures. He has his EEG booked for the first week of June and the MRI before that and then we have a follow up with the consultant paediatrician who specialises in epilepsy.

We just need to monitor and record in the meantime.

Thank you so much for the support everyone. It means a lot x

Glad to hear the wait isn't long. I hope you all get some rest now

Secretroses · 12/05/2023 05:38

Hogi · 11/05/2023 19:04

Just to update DS has been discharged. They believe they are atypical absent seizures. He has his EEG booked for the first week of June and the MRI before that and then we have a follow up with the consultant paediatrician who specialises in epilepsy.

We just need to monitor and record in the meantime.

Thank you so much for the support everyone. It means a lot x

Interesting they think they were atypical absent seizures and not gelastic seizures. I know nothing about seizures but the laughter element seemed quite unique to gelastic seizures.

Original poster
Hogi · 12/05/2023 09:17

@Secretroses it's a bit odd, they've put "probable atypical absent seizures" so I guess they're not totally sure but he's getting the MRI anyway so they'll be able to see if there's something there causing them.

OP posts:
StarsandStones · 18/05/2023 08:50

How are you holding up?

Original poster
Hogi · 18/05/2023 08:54

Hi,

Yes we're doing okay. He's still having episodes so we're recording them in the diary.

Still waiting on the MRI to be booked so might call the paediatrician next week as she wanted it booking before he had his EEG so not sure how possible that's gonna be but he's doing okay.

Thank you for asking x

OP posts:
NyanBinaryJohn · 18/05/2023 09:46

I've been reading this thread since the start.

A friend of mine suffers from typical absence seizures and they are mostly recognisable, but a lot of them go under the radar to those around her. I recognise a fair few because I've been around epilepsy sufferers for most of my life. Thing is, she is an adult and aware of them, so able to communicate when she's had one and also its severity.

What I am trying to say is: don't beat yourself up for not noticing sooner. Absence seizures are the strangest thing to witness at first, and it takes time for those around the patient to learn to recognise them. The shorter the episode, the harder it is to spot them. Especially in such a young child. You've done absolutely right by him and I wish you all the best with the next steps of the medical journey.

Be aware though that finding the right meds for seizures often is trial and error. It certainly has been for my friend. I also have a close family member who cannot be moved from their meds because it's the only combination and dosage which works for them. They've been episode free for over 2 decades now. Any changes (either reduction or change in type) attempted in the past resulted in tonic clonic episodes. It's handy to be aware of that so that it doesn't get you down.

Keep on doing what you're doing. You sound like a fab mum. Flowers

SunnyEgg · 18/05/2023 10:13

Op you’ve been really great with all this, best wishes to your ds

2023issucky · 06/06/2023 20:57

Wondering how your getting on OP?

Original poster
Hogi · 06/06/2023 21:09

Thank you for asking.

He's still having the episodes everyday but we've noticed they are definitely a tired thing, he'll get them in the car when he's falling asleep and just before bed. I can hear them throughout the night as well but they haven't developed into anything more which is good.

We had the EEG yesterday and he was so good! I couldn't believe it but he was super chill and they managed it.

He has an MRI in a couple of weeks and then hopefully in a few weeks we'll have some answers.

OP posts:
Zonder · 06/06/2023 21:22

Good news that nothing has developed and that you're getting the scans and tests done now.

Cuwins · 06/06/2023 21:25

Hogi · 06/06/2023 21:09

Thank you for asking.

He's still having the episodes everyday but we've noticed they are definitely a tired thing, he'll get them in the car when he's falling asleep and just before bed. I can hear them throughout the night as well but they haven't developed into anything more which is good.

We had the EEG yesterday and he was so good! I couldn't believe it but he was super chill and they managed it.

He has an MRI in a couple of weeks and then hopefully in a few weeks we'll have some answers.

Wow getting an EEG is tricky with any child but with a toddler that's very impressive! Well done you and him.

Sweetpea1532 · 06/06/2023 23:56

@Hogi
So glad to hear your little one is doing OK. What a good little chap he was to let the EEG people perform the test. Fingers crossed for the MRIFlowersFootball

Original poster
Hogi · 18/06/2023 21:25

Hello everyone,

It his MRI scan tomorrow and we have a meeting with the genetics team to discuss his condition.

I don't know why but I feel apprehensive and a bit scared like he's so little (he's massive really haha size of a 4 year old) but he's gonna look so tiny in that big machine and I'm dreading it.

He was doing okay with the seizures and then he had quite a few today, it's so stressful but I'm hoping these results will give us a bit more of an idea about what's going on.

A bit of a handhold is needed I think and then I need to put my big girl pants on for my little boy. It's so bloody stressful.

OP posts:
Cuwins · 18/06/2023 21:29

Hogi · 18/06/2023 21:25

Hello everyone,

It his MRI scan tomorrow and we have a meeting with the genetics team to discuss his condition.

I don't know why but I feel apprehensive and a bit scared like he's so little (he's massive really haha size of a 4 year old) but he's gonna look so tiny in that big machine and I'm dreading it.

He was doing okay with the seizures and then he had quite a few today, it's so stressful but I'm hoping these results will give us a bit more of an idea about what's going on.

A bit of a handhold is needed I think and then I need to put my big girl pants on for my little boy. It's so bloody stressful.

Good luck, I hope everything goes well and will be thinking of you.
As scary as it must be I imagine it will be much better to have some answers, the unknown must be so much more scary.

Ipadannie · 18/06/2023 21:31

When DS had his mri scan I was so worried that he wouldn't stay still and wouldn't manage. But he did fine. Good luck

KarmaIsMyBF · 18/06/2023 21:34

Ipadannie · 18/06/2023 21:31

When DS had his mri scan I was so worried that he wouldn't stay still and wouldn't manage. But he did fine. Good luck

They're gonna put him to sleep. First they'll try medication orally and if that doesn't work then it's a tablet up the other end and if that doesn't work we need to reschedule for him to go under general anaesthetic (that's kinda scary) so hoping he'll fall asleep from the oral medication.

@Cuwins thank you, you're right it's much scarier not knowing but I'm also a bit scared of knowing if that makes sense. I just really hope it's not something really sinister. We only got his diagnosis in March (for his genetic condition) so it all seems to be happening all at once x

Original poster
Hogi · 18/06/2023 21:35

(Sorry name change fail Grin)

OP posts:
roughtyping · 18/06/2023 22:06

Sending lots of love, have been following for a while. So scary going through these. When my son was diagnosed with his genetic condition my scary wait was his cardiology appointment. You will feel better once it's over and there is more information. I hope it goes quickly tomorrow!

RowenaRosewood · 18/06/2023 22:18

Yeah it’ll soon be over OP and hopefully you’ll have some answers soon.
Good luck tomorrow, we’ll all be thinking of you 💐

MedievalMadness · 18/06/2023 22:24

Lots of luck for tomorrow OP. I hope it all goes smoothly (I'm sure the nurses and doctors will be really good at making it as seamless as possible.

The hardest thing is being in limbo and not quite knowing what's what ot what the plan is. I hope you get some answers and the info and an action plan to keep DSs seizures under control .