Strange episodes in 3yo

[whenthecatsaway]

In September 2020 my 3yo ds starting having what we call episodes. They always happen in the morning. Usually 10ish so around 3 hours after breakfast. He had 5 spread out then none from November-3 weeks ago and he's had 3 since then. Nothing has changed, nothing triggers it, sleep isn't more or less, food isn't different, etc.
He goes very pale, sweaty, lethargic (just lays down and can hardly lift his limbs) he is responsive and not absent. Then after 15-20 minutes it's like a flip of a switch and he's up and about like nothings happened. No after affects etc. We've seen a neurological doctor and signed off she's happy it's not that. He's had blood tests and ecgs but all at times it's not happening because we can't guess when they're going to happen or even try to trigger them. I suppose I'm wondering if any of this rings any bells, the consultant we're seeing said its a mystery and she has no idea and we're to monitor for 6 weeks and take his pulse during the next episode. Have you seen this before? Any suggestions?

Hmm, sounds odd. Does he explain how he feels? I know that's tough if he's only 3

Never heard of this in a child im afraid but could it be a drop in blood sugar?

Have you ever filmed it for the docs?

My thoughts - could it be coeliac disease and the symptoms are gastric related?

Ide get the little mite checked for epilepsy op to be honest

We had an appointment with the epilepsy consultant yesterday who ruled out neurological after I showed her one of the videos. She mentioned blood sugars as did our previous consultant, but nothing was picked up in his blood tests. I'm not sure if you have to be in the midst of a low sugar episode to be diagnosed with anything related or of there's something there that can be picked up at all times. They're so random and with no pattern, it's difficult to get any tests done whilst it's happening :(

Reflexive Anoxic Seizures maybe?
www.heartrhythmalliance.org/stars/uk/reflex-anoxic-seizures-ras

There's no seizure, stiffening, eyes rolling, limb tremors and he is responsive the whole time, just incredibly lethargic, doesn't want to even lift his head up but awake and will reply to you as though he's asleep/very sleepy

Id agree that its difficult to confirm that its low blood sugar if his blood isn't tested during an episode.

Would the gp suggest doing at home finger prick test?

Alternatively, if gp gives it tho ok, you could get giving him something sugary to drink during an episode- orange juice maybe. If it helps him to recover then I'd say that's fairly telling.

*the ok

Typing on phone = nightmare

@TaraR2020

Id agree that its difficult to confirm that its low blood sugar if his blood isn't tested during an episode.

Would the gp suggest doing at home finger prick test?

Alternatively, if gp gives it tho ok, you could get giving him something sugary to drink during an episode- orange juice maybe. If it helps him to recover then I'd say that's fairly telling.

Hmm, i wonder if they 'rent out' those finger prick devices! I bought an oximeter for help reading his pulse, I could always get one of those but I suppose with it being more invasive I'd speak to the gp first!

Yes definitely consult with gp - you could either get one from them or from boots or online, but gp should approve and you'll need advice on how to use. Good luck!

You can buy the blood sugar test kits. It might be worth getting one to see what he is reading at when he has an episode

My ds had similar and we called them episodes.

He also had bouts of them and then months of nothing and had epilepsy looked into.

My ds does have a neuromuscular disorder.

Because he was describing funny light auras as well we concluded it may be a migraine of some sort. We also looked into idea of blood sugar.

So what we do now is when he starts is to give him some jelly babies followed by a flap jack and it's stopped it happening beyond the initial feeling.

He was sleeping for up to 5 hours after an episode.

And yes they will give you a finger prick device. We were prescribed one - but what that means is you attend a nurse clinic and they show you how to use it and you take it away to keep.

Dumping syndrome? A relative had it.

(late dumping syndrome, more specifically).
Relative hadn't had weight loss surgery or anything, that just increases risk.

It does sound very much like dumping syndrome - had he had any gastric tests done?

Though I don't know if children can have it, but the symptoms sound very similar.

OP, I sometimes get what feels like extremely low blood sugar and I find it really quite debilitating. I can't concentrate on anything and feel shaky and light-headed and have to quickly eat something sugary. Ideally something like cake that is sugary and filling. It's really unpleasant and I can imagine if you had something similar as a child you might want to go and lie down for a bit, so I wonder if your DS is experiencing this? I think the suggestions above of giving him something sugary to eat or drink are good, to see if this helps.