seizures - with screaming/gargling/choking sounds?

[hazeyjane]

I have posted this in Special needs as well, as ds is being tested for genetic conditions, has low muscle tone and is delayed in all areas.

Ds is 22 months and has been having these episodes since he was 1. They happen when he is sleeping, at first we thought it was a seizure, but ds's consultant thought more likely that he was choking on pooled saliva.

They don't happen every night, but have become more frequent. It is usually late evening and maybe once a week at the moment.He wakes screaming, staring, bloodshot eyes, clammy to the touch, his neck and throat distended and one vein very very bulgy in his neck, he is screaming but it is a very strangled scream and very gargly, one side of his mouth tends to be drawn down, he is normally very floppy (low tone), but during an episode is stiff and difficult to hold - dh described him as being like someone drowning.

It lasts up to 15 minutes, and is very frightening. As I say his consultant said it was probably choking on pooled saliva (he dribbles a lot), and we dealt with it as such - holding him downwards, massagging and patting to try and get him to swallow.

Now his consultant is wondering whether it could be a seizure, and has ordered an eeg.

But is it possible for seizures to happen like this, with screaming and only at night? Also how does an eeg work? I guess he needs to have an episode for it to show us whether it is a seizure or not.

Some people have seizures only in their sleep. EEG can pick up some things even if there is no outward sign of anything unusually. My ds2 has absence seizures and had eeg aged 3. He had to be asleep for it, possibly so he wouldn't fight off all the wires they stuck to his head. So you may want to check if this will be the same for your ds so you can try to tire him out before the appointment.

Best of luck with it. It's scary not knowing what is wrong with hour los so hope you get some resolution.

DD has a type of epilepsy which only happens at night, called BREC or BECTS. The excess saliva is a symptom (if that the the right word). She doesn't scream at all, but is unable to speak properly - though maybe your DS is trying to scream, but because of the seizure can't?

DD had an asleep EEG, but had to have an awake one first. For her the asleep one was because she only had them while asleep, so actually that was important. She also had an MRI afterwards, just to be sure nothing else was going on.

It sounds like your consultant is on the case though. We had to go private to get a diagnosis for DD and .

Best wishes, it was a worrying time for us, but some time down the line, DD is hoping to start cutting back her medication next month, when she will have been seizure free for 18 month.

I used to work in a school for children with severe epilepsy. The range of things that can happen during a seizure is huge. I remember one girl who would often scream during her seizures. She would also drool and be very rigid. The scream was not due to pain or fear it was just that the muscles around her throat and voice box had become tense during the seizure, so the sound was entirely involuntary.

It sounds like your consultant is starting to investigate what is happening. You are correct, an EEG will give the best information if a seizure occurs. It may take a few goes to capture one on the EEG. An EEG may also pick up events that are not showing up as an obvious seizure but can still assist with a diagnosis. I am not up to date with current technology, however the EEG measures electrical activity in the brain. It is done by placing a 'hat' of sensors on the head. It is not painful at all but would obviously feel a little strange to have something on your head while sleeping.

Sorry I have just read my post again. I hope my mention of severe epilepsy does not worry you. I am not trying to imply anything about your DC. I only mention that the children I worked with were particularly severe cases as that is the reason for the school.

Thankyou so much.

It has thrown me a bit because although at first dh and I thought ds was having some sort of seizure, his consultant seemed to be convinced it was choking, and although he mentioned an eeg, he focused more on ds's swallowing issues and dismissed the idea of it being a seizure. Now, a year later, he seems to have completely changed his mind.

Thankyou for giving me some info about what an eeg involves, and how it works wrt identifying whether seizures are happening. I guess I had always thought that a seizure would be obvious and distinct, but it seems that it isn't that clear cut.

I will ask my gp about BECT BRECT type epilepsy, to see what she thinks.

Thankyou again.

BECTS is Benign Epilepsy of Childhood with Centro Temporal Spikes
BREC is Benign Rolandic Epilepsy of Childhood.

The two terms seem to be more or less interchangeable. DDs first consultant always called it BECTS, and her new one (we moved) calls it BREC.

It doesn't seem to be unusual to take a long time to get a diagnosis if it isn't a "classic" type seizure. One paediatric house doc told us that there were only 4 kinds of seizures, and DD wasn't having any of those - so we were imagining it. I'm not joking! We've since discovered that there are more like 200 types!!!

Good luck, again.x

And if you do end up with a diagnosis that's on the epilepsy spectrum of conditions, there's loads of information and opportunities to learn more, talk to other parents via Epilepsy Action at www.epilepsy.org.uk/.