Anyones Teen have'non epileptic seizures' ?

[52andblue]

My 15 yr old Ds has Autism and Anxiety diagnosed.
He had been having (before lockdown) an increasing amount of epilepsy like 'seizures' and school said they couldn't keep him safe and not to bring him back until sorted. Not sure on position for next week, cant' get hold of anyone. He's been badly bullied there which must be a contributory factor but he will get bullied anywhere sadly as his ASD makes him stand out rather.
We've finally had an EEG and it seems it is not epilepsy but 'anxiety related movements' according to the 5m phone call with the Consultant who said he didn't need to meet us and compared it to nail biting - ie 'they don't realise they are doing it but will stop if you tell them to but it's also important not to draw attention to it'. (eh?)
This leaves Ds in a tricky position as he finds them painful, exhausting and hard to manage.

I just wondered if anyone else's teen had had problems with this and how best to support them?

Hopefully someone more knowledgable will be along soon but I did have one thought. My son is younger and NT but has had a couple of Reflex Anoxic Seizures due to sudden falls. Apparently this is similar to breath holding episodes common in toddlers. Could it be something akin to this? I’ve heard they can happen due to sudden shock or even sudden change in temperature so anxiety could be a trigger.

Hope you find some resolution.

Are these non epileptic seizures? Are they tonic clonic in style?

I know a child who had this due to anxiety and it was tested via Camhs using CBT.

They won't just go away without finding and dealing with route cause.

And school can not exclude him. They need to write a care plan and support him to prevent it and also when they happen.

Hi.
He has classic anxiety attacks. But he also has 'electric storm' attacks where he falls down, remains conscious but is not very aware of where he is. He has a lot of violent jerking and rhythmic spasming. On one occasion he also vomited. Hence he was sent for the EEG. During that he had the spasming (low level as he was quite relaxed) but the trace showed it was not epileptic in causation so the Consultant said it's 'just anxiety'.
But it still leaves him with the issue. I think CBT is not known to be especially helpful with Autism. I am NHS trained in CBT myself and Ds has not found it useful so far. I am looking at arranging some bodywork and guided relaxation / yoga type input as I felt that can't hurt?

1 Consultant and his Psychiatrist (as under 16 and on meds of promethazine to help sleep he is under a Psychiatrist) both thought it was Myoclonic epilepsy having seen video of an attack. Diff Consultant who looked at the trace taken at nearest hospital that does it (50 miles away as rural) said 'all just anxiety'

My ds has had similar. Also thought to be myoclonic epilepsy.

His seems a combination of anxiety which cause migraine type loss of consciousness and he's just been diagnosed with hereditary spastic paraplegia and the spasms are cause by it causing all his muscles to relax.

The complete combination!

Ds did have some CBT at 12 and he couldn't access it well due to emotional development but I've heard neurophysiologists can have good results but it is hard to find hospitals that do it anymore.

The other child I know did respond well to CBT through camhs (not asd but they did suggest it) but they also had actual epilepsy too and have had surgery now - and have no epilepsy or non epileptic seizures.

My ds has a blood glucose monitor. One thing we picked up was the symptoms could be related to low blood sugar which may have been caused by anxiety causing him to use lots of calories.
Also because I always checked his temp to see if unwell and it was usually 35.3! (33.2 once ).
He also always gets a low temp when unwell which we picked up by accident!

So when he has an episode (as we call them) we can check BM. We have found sugar (jelly babies followed by a biscuit) helps him recover quicker.

Should add my ds also has asd.

@itsgettingweird

thank you that is all very interesting.

I have wondered if ds (6ft, with a 'tache) is anaemic as he can get very pale. But his bloods were done to rule out any thyroid issues so I assume that would have picked it up? I'd also wondered about low bp as he gets giddy when he stands up quick but that seemed normal when they checked it too. He eats well and his nails and hair grow at supersonic speed. He has a LOT of problems with sleep and is prescribed Promethezine for this but wont take it at all as it makes him feel groggy in the mornings. I think his sleep is really poor. When camping or at a sleepover (at the 1 friends house he can cope with) he clutches a pillow to his chest the whole time and turns repeatedly - he is basically never still - no wonder his sleep is so poor.
He gets exceptionally tired after an attack and can sleep (almost out cold) for around 16 hours after.
He seems to be double jointed although never diagnosed as such and certainly fatigues easily, although he has on one occasion swim 60 lengths and hiked up hills with Cadets.
He certainly 'lives on his nerves' a lot and is very jumpy at all times.

Ds sleep can be poor due to muscle spasms. He takes baclofen which helps with spasms and making him sleepy!

My Ds says its often worse just before sleep and on waking up too.

Could this be POTS??

www.nhs.uk/conditions/postural-tachycardia-syndrome/

My son is 8 and since he was about 2 he's been having these kind of fits and the drs recently mentioned Reflex Anoxic Seizures.
It starts if some thing scares him last one was on Halloween at school and ended going to hospital. I have noticed that when it starts if I grab hold of him it stops and he will cry go pale and then go to sleep.
My son has a rare genetic condition and has learning disabilities.

He usually starts with a funny coughing or sounds like he going to be sick but swallowing it.
My Dr said unless he had 1 at least once a month they won't look into it.
Sally