Did DS (10) have a seizure, night terror or something else?

[RoughRoundTheEdges]

A few nights ago, about 20 minutes after DS (10) had gone to sleep, DP passed his bedroom door and heard him thrashing about. DP poked his head round the door and because DS's breathing was laboured, he came to get me quickly.

DS's legs were spasming, I suppose you could call it, and his chin seemed fixed on his chest and he was breathing very weirdly; not just shallow breaths, but like he was struggling to breathe.

DS has never had a night terror or a seizure before. Although I now know you don't stir a child having a night terror (if that's what it was), because he seemed so distressed, we reassured him we were there and tried to bring him to. We turned up the light and talked to him and gradually his legs calmed down, his breathing became normal and he 'came to'.

His eyes were open throughout and I asked him to look at me if he could hear me and knew I was there, and he did. As we were talking to him, he tried to reply, but didn't make any sense at all; it was just a load of mumble that came out.

Coming round, his right arm was floppy and he was lolling on to the floor - later, he said it was like there was no gravity and he didn't know which way was up. It took him a while to be steady on his feet and to be able to hold a cup of water; on the first attempt, he dropped it on the bed.

Afterwards, he could recount everything that happened; that his legs spasming woke him up, that he felt as though his neck had locked in position, and he was struggling to breathe. He said he felt like he was going to die and was very scared and tearful.

He was emphatic he wasn't dreaming - said he could remember it all, and that he hadn't been having a nightmare.

We reassured him, settled him back to sleep, and I called 111. The duty doctor said that because DS could recall everything, it categorically wasn't a seizure (I didn't think it was that black-and-white) - but she didn't say what she thought it actually was instead.

And as for it being a night terror, DS could recall the whole experience, and I thought that when a child has a night terror, they don't remember it.

The duty doctor advised us to book an appointment with DS's GP as soon as possible – the first appointment we can get with any GP is next week, so that's booked – and in the meantime, to call 999 if anything like it happens again.

Instinctively, it seemed to me like some kind of seizure, but because of its timing while DS was asleep, we're just not sure. DS is anxious about going to sleep because he doesn't want it to happen again, and I don't want to leave him on his own, so I've been crashing on a campbed in his room.

I'm not sure we're going to get anywhere with the GP, and I've been wondering if any of you in the know have come across anything like this; if you have any idea what we might be dealing with here. Does it sound like a night terror? That's obviously the best scenario.

Thanks so much for any insights/reassurances.

I think you were given bad advice- sorry OP. I used to have epilepsy as a child and my seizures only ever came on at night. They always woke me up and I remembered them clearly. I would be 'paralysed' for the duration of the seizure and unable to speak as my mouth wouldn't work properly, my right arm and leg would be numb and I found them terrifying. Mum and dad called 999 the first time it happened and every subsequent time until I was diagnosed and given medication which lessened the frequency of the seizures. Eventually I grew out of it but I definitely remembered it all and I was definitely epileptic. I would call 999 if it ever happens again.

I'm not sure but I think they would happen in certain sleep phases as well- REM sleep possibly- which I think might fit with the timing of your DS's episode.
Poor mite- it must have been very scary for him- and you!

PollyCazaletWannabe, thank you so much for replying. I'm sorry you had such terrifying similar experiences growing up; they do sound exactly like what DS experienced the other night. I can only imagine how frightening they must have felt. DS said the next morning that he was very glad his step-dad had walked past his doorway when it happened, "otherwise I might not be here this morning".

My gut feeling was that something was very wrong. I just kept thinking "He's having a fit, he's having a fit ..." And yet since then I've been doubting myself. My well-meaning dad has said he's sure it was just a bad dream, and that he seemed fine afterwards. The duty doctor took the view that when someone can remember anything about such an experience, it wasn't a seizure which, according to my limited first aid training (and a bit of a trawl online), isn't the case at all. I feel as though we've been fobbed off, and that we may well be again when we visit the GP next week.

How did your childhood epilepsy get diagnosed in the end? Can they look for something specific to be sure? How do we get the GP to take this seriously next week?

Again, thanks ever so much.

Sorry, I was out this evening and couldn't reply.

I was only 8 when I was diagnosed so I'm not sure, but I know I had a CAT scan and an EEG I think. I think because my parents had called 999 I ended up in hospital and so had all the tests quickly but my memory may be patchy or I might have conflated different times.
I would advise you to write down everything (time DS went to sleep, time the episode started, how long it lasted, precisely what you saw and how he felt). If it happens again I would call 999 straight away.

Good luck and try not to worry- I believe that epilepsy medication is very effective, if that is what it turns out to be. I certainly wasn't bothered by having epilepsy as a child in the 80s- it was scary during the fits but once I was diagnosed, much less scary as I knew what was happening. I should imagine that treatments have developed a lot since then, so you really don't need to worry too much- just push for a diagnosis .

I work in the NHS (healthcare professional). That sounds like a seizure to me. When you rang the GP surgery, did you tell them what happened? IMO that's the kind of thing they should squeeze you in more urgently for.

Btw there are different types of seizure, people can certainly be aware of some of them.

Thank you again, Polly. It's really helpful of you to share your experiences.

I have written down what happened - in this post! But I'll make a note of it how you suggest. Neither DP nor I saw the full episode; DP just happened to hear DS struggling with his breathing when he walked down the hallway. So I don't know how long it went on. But I can log the signs we observed once we got in to DS and the symptoms DS experienced.

It's encouraging to know you were well looked after (eventually) once whisked off to hospital, and that you've outgrown your seizures.

I've emailed DS's teacher, just to make her aware of what happened and that we're in limbo in terms of knowing what it was. I've said to call 999 if it happens again on her watch. DS starts swimming with school this week; perhaps I should make sure the swimming instructor knows too?

justabigdisco, thanks for posting too. Yes, when I spoke to the GP surgery today, I explained what had happened and that the out of hours doctor had said DS needed to see his GP this week. It's usually about a month's wait for our GP; the appointment they've given us in eight days is the first they have available with any of their doctors. Ridiculous, isn't it?

My DD has just been diagnosed with epilepsy, she's nearly two. I thought that most types of seizure involved a loss of consciousness and therefore the child won't be able to respond (certainly true in DD's case). I just had a quick squizz in a book on the subject and apparently 'simple partial seizures' which are just happening in one lobe of the brain can occur without losing consciousness and cause spasms etc.

I hope you get help soon, it's really scary (the last month has been pretty much hell and we are still waiting for answers despite six full on tonic clonic seizures) x

DS had night terrors, and they were nothing like you've described. He used to run around the house, sweating, staring and sobbing, but could remember nothing the next morning. Definitely push for an appointment as early as you can.

My DS has seizures but not epilepsy because his seizures don't match epileptic seizures or something and his EEG was clear, but he has them all the same. They aren't sure what it is either but they are seizures.

My DS had a seizure almost exactly as you described just over a year ago. It didn't wake him but happened just after he fell asleep. He fell out of bed so initially we thought it was due to a head injury and went into full 999 mode. However he recovered in the same fashion as your DS but was admitted to hospital overnight for obs.
As he was seen by the paediatrician he was referred to the neurologist and following tests was diagnosed with a form of epilepsy that occurs almost always during sleep or immediately on waking. And he will have grown out of it by the time he hits puberty. He doesn't take meds and as far as we are aware he has had no more seizures.
It is very important to see your GP. It really depends on the local protocol as to whether they investigate after one episode. But if he has another 'seizure' type episode he will be investigated.
I had a lot of reservations about getting a definitive reason for his seizure because a significant number who are diagnosed have no more seizures. But I'm glad we had the diagnosis now because we stopped worrying about the many other things it could. As for my DS he has carried on regardless, his only moan was that he couldn't sleep on the top bunk on a recent residential with school.

Sorry to hear this happened to your ds, it must have been scary to watch.
My ds had night terrors between the ages of 2 and 7 and they were not at all like that. He never remembered anything about it the next day. He used to move about a lot, constantly changing positions. He would talk but make no sense and if we tried to intervene, we became whatever it was he was seeing and he would lash out at us and be scared of us. It was horrible to watch but nothing like what you describe.
I hope you get to the bottom of it quickly.

It sounds like a seizure to me and I would get him seen by a GP tomorrow

You can get an epilepsy sensor mat if your ds has a diagnosis. It might put your mind at rest during the night. Our LA will provide them for free, I don't know if yours will, but its worth asking.