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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:
Darkroot · 09/05/2023 10:04

You sound like a wonderful mother 💐
Hope you get to the bottom of this, you’re in the right place x

Highdaysandholidays1 · 09/05/2023 11:13

I'm glad you are there and getting the attention he needs. Don't worry about the past, it sounds like it has suddenly got worse and that's the thing that needs investigating. Keep posting here if it is helpful and a place to put your thoughts.

OpposableThumbs2 · 09/05/2023 11:16

PaddingtonTheAngelofDeath · 09/05/2023 09:00

Would you mind explaining what happens a bit more, does it happen from no where, can you distract out of it? Only asking as a child in my family has random outbursts of sobbing, which are worse at bedtime/night and which seem completely unrelated to mood and seem manic rather than upset if that makes sense?

Good luck with the doc today I hope you get some answers.

There is some information here which might help.
https://www.epilepsy.com/what-is-epilepsy/seizure-types/gelastic-and-dacrystic-seizures
I think my husband has the crying ones along with other types. For him they are linked to Functional Neurological disorder.

Gelastic and Dacrystic Seizures

What are gelastic and dacrystic seizures? Gelastic and dacrystic seizures are focal (or partial) seizures that start in an area at the base of the brain called the hypothalamus.

https://www.epilepsy.com/what-is-epilepsy/seizure-types/gelastic-and-dacrystic-seizures

Original poster
Hogi · 09/05/2023 11:29

Okay we have a plan. We are being discharged and have been told to monitor the situation, film and make a diary. The doctor thinks they are atypical absent seizures. We are getting an urgent outpatient EEG which will be in a couple of weeks and an MRI so it's being investigated.

OP posts:
RowenaRosewood · 09/05/2023 11:34

That's good news, at least they are taking you seriously now.
Best wishes to you and your little one, hopefully they can get to the bottom of it.

Willmafrockfit · 09/05/2023 11:37

good news, is this your neurologist?
take care op @Hogi

Original poster
Hogi · 09/05/2023 11:40

Willmafrockfit · 09/05/2023 11:37

good news, is this your neurologist?
take care op @Hogi

It was the hospitals paediatrician which luckily also specialises in epilepsy so we're also under her now as well as my neuro one until we know what's going on

OP posts:
LookItsMeAgain · 09/05/2023 11:43

You must be relieved that your concerns are being taken seriously and that you have a plan now for your little one.

Willmafrockfit · 09/05/2023 11:43

even better @Hogi Flowers

Fraaahnces · 09/05/2023 12:08

So pleased that everyone’s taken you seriously and you now need to listen to us tell you that you are an amazing mum. You acted as soon as you realised the need and you advocated for your child and got him the RIGHT help.

Highdaysandholidays1 · 09/05/2023 12:09

Good news that you have a plan in place now of how to proceed. Excellent mumming!

Tinysoxx · 09/05/2023 13:09

Document every time he has a seizure. I have an old fashioned diary that I put start times in and any unusual stuff. On particular note is any triggers or how it starts. And list which doctors you saw when. Put any letters in a file. When you are dealing with lots of drs from different hospitals and departments you will be the only one who knows everything. They will be asking you for information so it’s good to be clear and have the data ready.

OvertiredandConfused · 09/05/2023 13:15

Tinysoxx · 09/05/2023 13:09

Document every time he has a seizure. I have an old fashioned diary that I put start times in and any unusual stuff. On particular note is any triggers or how it starts. And list which doctors you saw when. Put any letters in a file. When you are dealing with lots of drs from different hospitals and departments you will be the only one who knows everything. They will be asking you for information so it’s good to be clear and have the data ready.

This.

And, if you can, take a photo of as many hospital notes and test results as you can.

AwwJeezyPeepsMan · 09/05/2023 15:24

@Hogi 💐

ASGIRC · 09/05/2023 15:37

Hogi · 09/05/2023 07:51

Gosh it's crazy isn't it. I guess I thought a seizure was what we see on telly, a lot of shaking around but obviously that isn't the case but thank you for sharing. It does help.

I think the doctor said imaging to be fair so possibly CT scan.

Show quote history

Its crazy how many different types of seizures there are!
One of my best friends has epilepsy and most of her seizures arent noticeable at all. She just starts blinking really fast. And unless you know what youre looking for, you wouldnt know!!

Floralnomad · 09/05/2023 16:08

That’s great that you have a plan @Hogi

supercatlady · 09/05/2023 16:16

Hey OP,
As a parent of a young adult with a rare chromosome disorder I can tell you that your Mum guilt will likely rear its head frequently, BUT you did the best you could at the time with the information you had, so please be kind to yourself.
Youve done amazingly to question being sent home without a plan twice now and I really hope you get some answers soon.
Take care
xx

gogohmm · 09/05/2023 16:22

Just a word of caution, despite multiple eegs and mris they never caught DD's on tape so to speak. The school nurse medically observed them so it wasn't our imagination. Partial complex seizures, last one was at puberty, none since 🤞

fairycupcakes · 09/05/2023 17:16

Huge well done for being such a strong voice and brilliant advocate for your little one. It can’t have been easy if that assertiveness doesn’t come naturally to you so you should be really proud you stood your ground and didn’t let them fob you off in the first instance. Sending lots of love to you and the little one and fingers crossed you get a diagnosis soon so you know what action you need to take x

SofiaAmes · 09/05/2023 18:45

As the mom of a ds with a rare genetic disease that wasn't diagnosed until he was 11....document document document. Keep a daily/hourly log of EVERYTHING. The names of every medical professional you see and notes on what they say. Ask for copies of every test right then and there. Keep track of every medication (even acetaminophen) and of course, log the seizures (or anything else that happens). My ds had all sorts of weird physical symptoms that we later realized were actually symptoms of his disease. (eg as a little child he used to say that when he was tired or over stimulated, his eyesight would go blurry in front, but his peripheral eyesight would become "super human"....it turned out that not only was this a real phenomenon and a symptom of his disease, but a good pre-indicator that he was going to have an episode of something more serious.)

QuintanaRoo · 09/05/2023 18:59

I think you’ve done amazing to recognise something so rare, to get seen so promptly, to take him back and advocate for him when you weren’t happy after they sent you home the first time. Well done.

Cuwins · 09/05/2023 19:01

How is he doing this evening?

Original poster
Hogi · 09/05/2023 19:17

Cuwins · 09/05/2023 19:01

How is he doing this evening?

He's absolutely fine. We've had a treat tea for him being so brave and good at the hospital (McDonald's chips because we're all knackered and too tired to cook).

He hasn't had any further episodes today but they do increase at night so gonna keep my eye on him but he's in good spirits.

Thank you for asking Flowers

OP posts:
LamentedHelicopter · 09/05/2023 19:31

With everyone saying keep a record of everything (I agree) it might be worth getting one of those baby tracker apps. That generally has a timer for something you could use so you don't have to think when looking after him. And then you have the stats to hand as well as a record. It could be worth tracking sleep and meals too as some seizures can be related to one or the other.

polkadotelephant · 09/05/2023 21:08

Good luck. Try joining a Facebook group as well. It’s really helpful to ask questions etc from other parents. There are also plenty of videos of different seizures to help you make comparisons.

definitely keep a record of seizures and take as many videos as you can.