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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:
IHappenToLikeThisUserName · 09/05/2023 03:45

Hogi · 08/05/2023 23:35

They were going to send us home saying he needed an outpatient EEG.

I said I weren't happy with that as it's a 6-8 weeks wait and it's concerning they have increased, they're affecting his sleep and he's struggling so after viewing the video they're happy to keep him in over night for observations (just a nurse popping in and out) but a consultant will be on site tomorrow.

I've also sent the videos to my own ped doctor so hopefully we get some help one way or another

It is incredible that you were a strong advocate for your son.
Keep that up!
You are going to be his voice.
I KNOW you can do this ❤️

I've recently been put in similar situations with my sick child.He's 18 but rn he still needs me to be his advocate.
Sometimes it feels uncomfortable going up against medical professionals who trained for this stuff.But personally had to stand up to a NP and ended up telling her what tests to run.(unfortunately I was right).

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

He's had another three back to back whilst we've been on the ward which is not great but at least they saw what was happening.

Nurse thinks it's a seizure too so pushing for investigations tomorrow.

Fingers crossed now they've seen it first hand we get it pushed through a little bit.

It's waking him up and keeping him awake. My poor little boy Sad

OP posts:
Beepbopadooda · 09/05/2023 05:20

@Hogi I have no advice to give but here for a handhold for you. Your poor little boy this must be heartbreaking. He's lucky to have such a supportive mummy.

Cuwins · 09/05/2023 05:27

Hogi · 09/05/2023 05:17

He's had another three back to back whilst we've been on the ward which is not great but at least they saw what was happening.

Nurse thinks it's a seizure too so pushing for investigations tomorrow.

Fingers crossed now they've seen it first hand we get it pushed through a little bit.

It's waking him up and keeping him awake. My poor little boy Sad

As horrible as it is as you say atleast they have seen them first hand now and the nurse agrees.
I hope you get some support this morning

Hueandcry · 09/05/2023 05:27

You've done the right thing & you're in the right place to get him help. Well done. Don't despair & don't beat yourself up. Fingers crossed you get some answers tomorrow

Original poster
Hogi · 09/05/2023 05:32

Thank you everyone honestly I can't say how grateful I am for all the support here.

I'm heartbroken I feel like the worlds worst mum because this has been going on for at least a year but it was so fleeting and quick at first I didn't even notice and then like said just thought it was a weird quirk of his laughing before bed and in the mornings. My childminder said they same, she thought he was just happy or remembering something funny.

I just keep reminding myself that as soon as I realised anything was wrong I got him help and that's what counts.

I'll try and keep this thread updated just in case anyone comes across similar in the future plus it's a nice place to share and rant without upsetting DH or family members because it's a scary time for us really and here I can just say how I'm feeling and I'm so thankful for the outlet.

You've all been so awesome and supportive Flowers

OP posts:
MrsTerryPratchett · 09/05/2023 05:35

I just keep reminding myself that as soon as I realised anything was wrong I got him help and that's what counts.

Please do. We all think we should be psychic and have 20 PhDs as mums. In reality we're all muddling through.

Take care Flowers

WTF475878237NC · 09/05/2023 05:49

I just keep reminding myself that as soon as I realised anything was wrong I got him help and that's what counts.

^ absolutely. It's obviously been a gradual worsening and not your fault at all. I hope he is diagnosed either way so you can move forward bless him.

GoodChat · 09/05/2023 05:50

Just remember the fact you're in a building full of medical professionals and none of them could help until the consultant comes in today. It's not a usual case that they see. If it was, you'd have sought help long ago. You've done everything you can do Flowers

Ducatifan · 09/05/2023 06:08

GoodChat · 09/05/2023 05:50

Just remember the fact you're in a building full of medical professionals and none of them could help until the consultant comes in today. It's not a usual case that they see. If it was, you'd have sought help long ago. You've done everything you can do Flowers

This. Don’t be hard on yourself OP. Hopefully you’ve managed to get some sleep.

OhwhyOY · 09/05/2023 06:15

Don't beat yourself up, you couldn't have known. It sounds like a very unusual case. Hope today brings some answers and eases your worries.

Freshstarts22 · 09/05/2023 06:18

You done really well getting him seen. Hope he’s okay.

Barnbrack · 09/05/2023 06:21

Hogi · 09/05/2023 05:32

Thank you everyone honestly I can't say how grateful I am for all the support here.

I'm heartbroken I feel like the worlds worst mum because this has been going on for at least a year but it was so fleeting and quick at first I didn't even notice and then like said just thought it was a weird quirk of his laughing before bed and in the mornings. My childminder said they same, she thought he was just happy or remembering something funny.

I just keep reminding myself that as soon as I realised anything was wrong I got him help and that's what counts.

I'll try and keep this thread updated just in case anyone comes across similar in the future plus it's a nice place to share and rant without upsetting DH or family members because it's a scary time for us really and here I can just say how I'm feeling and I'm so thankful for the outlet.

You've all been so awesome and supportive Flowers

You're clearly an amazing mum, your baby has been prioritized, you've looked up what it might be, you've noticed once things have escalated to a point it looks out of the ordinary. Seizures are SO hard to diagnose even full tonic clinics trained medical professionals struggle to tell when my son's seizures have stopped and he's just having post ictak spasms or if he's still having partial seizures. It is SO hard and if it's gelastic seizures they're so atypical to what we think of as seizures. I only know about them from researching my son's condition. You've got him where he needs to be, you're amazing.

Dwadle · 09/05/2023 06:25

Seizures are hard to diagnose unless picked up on the EEG or witnessed (person or video) and even then trained medical professionals don't always get it right, especially with all the variants of seizures.

Our youngest has epilepsy, it seemed very scary at first but his epilepsy nurses are always there for us to call and his medication has his seizures under control. He very rarely has a seizure.

His Consultant also said, now he's been diagnosed, not to go to A&E with him, unless the seizure lasts over 5 minutes or he has more than 3 back to back or if we think the seizure has really effected him beyond "just" being tired.

Best of luck OP.

Theduchy · 09/05/2023 06:30

I've just read your thread this morning OP and I think you've done incredibly well advocating for your little one. He's lucky to have such a strong mum.

MathsNervous · 09/05/2023 06:38

GoodChat · 08/05/2023 11:05

Except they weren't useless and wanted to send an ambulance so they clearly understood the gravity of the situation.

Show quote history

Not unusual for this poster to just pop up on a thread and post something which causes a stir....

MathsNervous · 09/05/2023 06:39

Viviennemary · 08/05/2023 11:08

Well thats good it is getting sorted out. I read they were unqualified people and worked from a tick sheet. Perhaps thats wrong.

Yes you are wrong.

Original poster
Hogi · 09/05/2023 06:42

I have an amazing nurse I'll be sad when she goes home. She called the doctor down to see the videos I took and her witnessing it as she's taking them very seriously.

The doctor came down actually listened to my concerns, all of them even about the gelastic seizure concern (even thought it's rare). He's ordering an urgent EEG, more bloods to test for different things, speaking to my neuroped and looking at seeing if we can get an MRI or some imaging. He really wants to get to the bottom of it but mostly I actually feel listened to after being turfed out this morning and being told to wait 6-8 weeks (TBF I didn't have the videos so they didn't have the evidence and at that point he wasn't having them back to back like he has tonight)

I know the NHS is having a bit of a shit time at the moment sadly but there really are some amazing nurses and doctors. I feel safe, hopefully it carries on like this.

I think the scariest part is not knowing why they're increasing in frequency and length but we're in the right place.

OP posts:
flapjackfairy · 09/05/2023 06:44

@Hogi
seizures are incredibly hard to spot so dont beat yourself up. Our son does all.sorts of seizures and keeps developing new seizure patterns all the time and we still miss things at time after 9 yrs .
I would suggest ringing your neurologists secretary first thing to inform them and ask.that a neuro doctor reviews you on the ward with a view to.getting your child on anti.epilepsy drugs before discharge. Dont be fobbed off . x

flapjackfairy · 09/05/2023 06:47

ps @Hogi
I cant tell you how many times people have said oh look how happy he is when our son has been having gelastic seizures. I dont even bother to.explain because people look at you as if you are mad ! . they really are v hard to identify so no more guilt.x

QuintanaRoo · 09/05/2023 06:52

I’m glad they’re taking it seriously, hopefully the consultant gets things moving today.

JoanOfAllTrades · 09/05/2023 06:55

@Hogi I’m a nurse, and at times, I’ve argued with consultants because they may see the patient for 10-15 minutes, I’m with the patient 8.5 hours per day. Seems like you’ve got a really good nurse and a doctor that actually listened to what you were saying. It’s slightly appalling to me that you’ve had to show them video evidence but it seems like the seizures are more at night, so being admitted for the night, was a good move. If you’re concerned at any time, ring the bell. Remember, you can ask for. 2nd, 3rd, 4th or even millionth opinion, if you get a nurse or doctor that is just poo pooing you. You sound like a good advocate for your son, don’t beat yourself up, ok? You’re a good mum and you got medical attention as soon as you could 💐

Natsku · 09/05/2023 06:57

So glad they are taking it seriously. When I read earlier in the thread that they were sending you home and you'd have to wait 6-8 weeks for an EEG I got the rage! Well done for advocating for your son and getting him taken back in, you are definitely a good mum, some wouldn't feel so confident to call back and say he needs to come back in (honestly I would struggle to do that, its hard to say no to medical professionals)

SergeiL · 09/05/2023 07:10

You are doing an amazing job for your son @Hogi - hope you get some answers soon and that your poor little boy gets some rest.

Theygolowwegohigh · 09/05/2023 07:19

So glad you're being taken seriously. I hope you get some answers soon and both get some rest.