Post EEG for Epilepsy advice please?

[52andblue]

Accompanied Ds, 15, to EEG test yesterday.

Referral made by Caamhs in March as he was having 'seizure like behaviors' so badly that School refused to have him back until it was assessed (after this gradually progressed, into 4 'fits' in 5 days, dropping to floor, violent jerks, conscious but not aware, total exhaustion afterwards). But he has Autism & tics so 'it is not clear'.
Paed Consultant thought possible Myoclonic epilepsy: ordered EEG.

The test was in 3 parts:
firstly just sitting quietly eyes shut = almost no activity
2nd: with deep breathing = increasing activity including really violent spasms (but stayed seated) and rhythmic head rolling which I've never seen before. This took around 15 mins to 'calm down'.
3rd: intermittent flashing lights, again less response but some

After he was exceptionally tired and nurse repeatedly asked him if it was 'just a panic attack' and he said no, I'm really calm and having a great day today. She kept pushing him and he said it was 'like an electric storm in my head and body and it hurts and I'm very tired now'

We have to wait a couple of weeks for results via Consultant (fair enough) but school won't let him back 'as is'.

Is there an HCP who could venture an opinion please?
Caveat: I totally understand no one but the Consultant with the charts can actually tell me (and maybe not even then) but I'd just like to understand better meantime? The middle of the chart esp showed a lot of activity but the nurse said: 'its probably just muscle twitching'

He was in (some) distress & pain & it was hard to watch some of it :(

I sat in with DH when he had his first one and he didnt experience any symptoms you described and felt completely normal afterwards. He did feel funny after the minute of deep breaths but she said that was expected. Obviously no medical advice but it definitely sounds like he was triggered during it.

@Sparklyring Oh that's interesting that you sat in with your DH.
The nurse was most grumpy about me asking to come in from waiting area. Tbf, Ds is 6ft with a tache but is also 15 with ASD and SEN.
She tutted at me all through (I sat quietly in a corner and didnt make eye contact with either but was glad I was there as she needed to realise he didnt understand some of the Qu's)
Did you DH have a subsequent test / get a dx, out of interest?

Did he have all the many clips glued to his head? This may have triggered his reaction? We had a definite epilepsy diagnosis from the result as they could detect seizure patterns. I’m sure they’ll be able to differentiate from the results but I’m not a HCP either. Hope you get some answers.

@GoldenGumballs - about 10 across the front of his head yes

There were a LOT of jaggy lines on the trace but the nurse seemed to dismiss it as 'muscle twitches'.

He said tt was about 30% of how bad it CAN be, as he was already relaxed & calm & not tired - unlike when he is trying to cope with School

Poor lad it’s not a pleasant test but it doesn’t hurt but I can imagine quite distressing for your son. The neurologist will literally read between the lines & hopefully you’ll get meds that suit and stop the seizures. If it’s not epilepsy this will become apparent and then he can get help for the very seizures like symptoms he is showing. All the best.

Hi 52, I'm not a HCP but I do have epilepsy and so have had quite a lot of EEGs - it was clearly a distressing for your both, I'm so sorry. To make things a little more complicated I have both epileptic and non-epileptic seizures; I was diagnosed with epilepsy 30 years ago via EEG and CT scan, the non-epileptic seizures are quite a recent annoyance. Thanks brain.

EEGs always use these 3 parts and I have never felt unwell afterwards. Photosensitivity is a component of my epilepsy, so a seizure is always triggered during the flashing light stage but they always stop the lights immediately, before I fully enter a tonic clonic state, so I'm only effected for a few seconds. On the EEG these are shown as spikes on the recording. I've never experienced any of the usual postictal symptoms after an EEG where I've had actual epileptic activity. I also have non-epileptic seizures which have been recorded via an ambulatory EEG over the course of a week, these seizures obviously record no epileptic activity in the brain (no spikes) yet I do feel very drained and confused for a while afterwards, but not to the extent that I do after an actual epileptic seizure. I have non-epileptic or epileptic seizures with or without an obvious trigger, it's not necessarily the case that you feel stressed/anxious/tired and have one in response, although I have had ones when I've been overbreathing because of panic. All of the seizures I have now are non-epileptic as the epileptic ones are completely controlled by medication. Wishing you and your DS the best. I hope this makes sense and helps in some way; I'm struggling a bit today after having lots of seizures (non epileptic) so I think I've rambled a bit and please excuse any mistakes!

Thanks @GoldenGumballs
It is the seizures that hurt him, he says they are like electricity and his limbs spasm so violently that he can hit the wall / floor etc
Yes, it would be great to know what is causing it so hopefully can help.

Meantime we are working on low stress & good sleep & nuitrition etc.

She was probably a clinical physiologist and not a nurse, so someone with at least 4 years training.

I did a similar job but in cardiology but there are some things that are the same, muscle 'twitches' or movement make a huge 'spike' on both ECG and EEGs but they are not significant.

As part of the course I did learn some things about EEGs but this was a long time ago.

Also EEGs record very small voltages, part of the art of making a recording is to filter out cardiac signals so they don't show up.

The link below shows some normal EEG recordings and as you will see they look really different.

www.britannica.com/science/electroencephalography

So please try not to worry but do write down questions for the consultant.

Oh and the reason she may not have wanted you in the room is that sometimes (and I'm not saying this is the case) tees suddenly develop medical conditions that are not actually conditions but an excuse to get out of activities, a cry for attention, something they think would be cool to have.

Link to an ECG - where the trace appears to go mad is just someone making a fist or wriggling a toe - nothing to worry about.

www.mauvila.com/images/Tremor.gif on an EED this might be 4 times as big.

@sassh

She did not introduce herself or wear any sort of badge so I can only assume her 'rank' as it were and yes it may not have been 'nurse'.
It was a bit odd that she thought ds was 'about 20' when it was a Paediatrics appointment, so I guess she'd not looked at basic info?
Ds Psychiatrist and a Paediatric Consultant both wanted him to have an EEG so I guess they don't think he is 'crying for attention / trying to get out of activities' (he's excused PE due to his disabilities anyway)

interesting info - thank you :)

I just got the appointment letter, to see a diff Consult, for 15th Sept, (sent before we attended yesterday) after School returns - a problem..

I suspect they are trying to rule out epilepsy for a diagnosis Dissociative Seizures, hence the question about the panic attack.

EEG have different affects on different people - his term "electric storm" is interesting - has he been reading up on epilepsy?

I don't think school can exclude him - that's discrimination. What happens if it is dissociative seizures - it won't resolve quickly at all I am afraid and needs specialist care. They cannot just refuse to take him until he is "better".

@Jargo - thanks, helpful, I will google dissociative seizures.

'reading up' - no I don't think so. He is just good at describing what happens to him. He has told all HCP's that he does have panic attacks - and he does have 'electric storm' attacks and that they are quite different. Occasionally they overlap but mostly they don't.
the first electric storm one was when he was 8 on a school trip. He fell to the floor, vomited and the paramedics were called. It was quiet (ish) for around 4 years but upon puberty (12) it started to get cumulatively worse. He often has the electric storm ones in bed before sleep / on waking or in the shower when he is quiet and relaxed - he gets no warning, they hurt, and afterwards he is totally exhausted. The panic attack ones are really different - he gets warning, he hyperventilates, he feels panicky, but friends help and he's a bit tired but can carry on.

School did exclude him a week before they shut to most.
They say they 'cannot keep him safe' upon return unless he has a dx and medication.

unless he has a dx and medication.

Some types of seizures are not treated by medication though, honestly you really need them to get a plan in place because he could be out of school for years potentially.

Hi, tbf I am not sure they put it quite that specifically.
but they said they cannot keep him safe. They will withdraw him from his GCSE Dtech and possibly engineering but they'd prefer he was not there as they are worried about him falling down stairs and they don't ahve the staff to sit with him. Despite the ASD he doesnt have an EHCp.
they sent him home on the Monday the week they closed saying: 'we can't keep him safe dont bring him back till its sorted'.
He IS safer at home and he has dramatically less seizures though he still has some.

I’m not clear exactly what aspect you want advice on but, as others have said, the EEG will hopefully help to diagnose your son and indicate how to manage his condition. I’m epileptic and have never been triggered during an EEG, but I’m on medication to control it and your DS obviously isn’t yet. I recently had an EEG though to investigate my condition further (after issues during pregnancy) and it apparently showed nothing of note, so it won’t necessarily give a clear cut answer. I would imagine they will also send him for an MRI, as these can also help diagnose the nature of the epilepsy, e.g. is it caused by a lesion, does it start in a particular part of the brain etc. Often these would be commissioned together though, so maybe ask if one doesn’t seem planned. And where are you based? After previously having my care managed through my local hospital I recently had an MRI at the National Hospital of Neurology in London (NHS), which has more specialist equipment than many hospitals. If you feel that time is of the essence in terms of your DS getting back to school then many of their doctors see patients privately as well. For better or worse their expert opinion can be secured much more quickly If needed.

Hi @Himawarigirl thanks for info
Not aware an MRI is planned no.
We are being seen at the Great North Children's Hospital / Royal Victoria at Newcastle. I imagine the National Hospital of Neurology is amazing.
But I would struggle to find the money for private plus a trip to London would be difficult (2 ASD kids, now a single parent, Carer's allowance)

Hope you get good care for your DS. The national hospital is an NHS one thank goodness. I hadn’t known about it before and they said that anyone can get referred to it. I learnt at the same time that many of their doctors work privately in nearby clinics as well. But sounds like that would all be a bit much to get down there for you and I’m sure you will get good care where you are.

@Himawarigirl

that's worth knowing, thank you xxx

It's actually a very good thing that the EEG captured your son while he had one of his episodes, it will aid a clear diagnosis of what they are.

I would hazard a guess that the person carrying out the EEG was asking him if it felt like a panic attack as there was no epileptic activity captured whilst he was having symptoms.

Non-epileptic seizures are very miss-understood, it might help you to read a little about them while you wait to see the consultant in September, just in case the diagnosis is not epilepsy.

The school sounds like they are being really difficult, I hope they change their stance soon for the sake of you and your son.

@farfar2020

Yes, they were much reduced from normal, but there were some yes.
It seems that non epileptic seizure activity is just attention seeking?
that doesn't really fit with ds. He hates attention actually, with his ASD
he is a really shy and private person.

Non epileptic attack disorder or dissociative seizures are not attention seeking, please don't think that, think of it more as a physical response to an emotional trauma. It is entirely possible that this is the case here given the medical history you have described but hopefully your next appointment should give you the answer either way.

I'd be going back to the school OP. Even IF your son gets a diagnosis at his next appointment, it can take months to find the right treatment/dose. I was diagnosed aged 12 - I'm still not completely seizure free as an adult and continued to have seizures all through secondary despite medication! School are going to have to come up with a better plan than "come back when you're better" .

Hello,

Sorry I've not read the whole thread through so excuse me if anything has been repeated.

I'm a learning disability nurse so although I cannot read the EEG I might be able to give you some understanding.

The nurses comments were not the most tactical, however, she was more than likely trying to gain an understanding of how your DS felt during this episode. I have known people not know they happen during the EEG and some know they do.

For your DS to remain conscious it would have to be a partial seizure which means not all the brain is experiencing this activity. It is often believed a seizure is not one due to being awake. However, it will show up on the EEG report if this is epileptic or not and epilepsy is common with Autism.

Additionally it could be a non-epileptic pseudoseizure. This looks similar to epilepsy but there is no brain activity (which is a good thing). He will still be tired and can present and recover in the exact same way as an epileptic seizure. It has a huge effect on the body. It may be that he is being over stimulated by something in his environment to cause this - could look at light, noise, sounds, heat, touch, stress, foods etc especially with his ASD.

I'm unsure of his needs regarding his autism but you may be able to access a specialist epilepsy nurse/ behavioural support nurses for people with learning disabilities/autism in your area and can start the transfer to adult services at 16. Your GP can advice this if needed. Additionally they're are hospital liaison nurses that can support you and the staff on how to meet your sons needs while he has appointments/admissions.

Hope this helps and sorry if you know it already or if I've repeated anything

Regarding school once a management plan is in place they will be happy for his return. They neuro team/CAHMs/above professionals can help to provide one with you.

@GigantosaurusRex
thank you that is a helpful way of putting it.
Yes, I guess that could be the case? He is very bright and very emotionally sensitive and sensory. When he was little he was quite synaesthetic but that has reduced as he's got older (though I noticed him 'chewing' the flashing light and trying to spit it out) He is 'too empathic' for his own good and is always trying to sort everything out for everyone and make everyone happy instead of himself, iyswim. He's had a VERY bad time of bullying at School (every school he has been to) and has had little support for his ASD so far. He's an amazing young man in very many ways = interested in everything from politics to metaphysics and has taught himself to play piano over lockdown. But I suspect it is far from easy being him and I worry about his MH / employment prospects (and they are linked i think) in the future.

@scissy - Yes!

@PeanutButterFalcon
thank you this is all very useful to know
School were 'don't bring him back till it's under control' in March
After a long chat with the DHT, they did offer him the 4 x half days they were offering other Y10's just before hols, but he only managed 50%
I don't know how confident I am about them keeping him safe either tbh. They are nice enough but comms are poor and he was once out wandering in town for 3 hours (despite being on a vulnerable list) before they noticed. (he phoned me at work and said he wasnt coping and was coming home on a public bus, I phoned them to say he was safe and I was leaving work to go home but they'd not noticed he was missing) On another occasion they said a 15 yr old friend of his 'could accompany him home on the bus as he's had a seizure and we dont' have staff to watch him'. I felt this was inappropriate, left work and picked him up (we are 20 miles from school). I know epilepsy can be triggered by stress and he certainly experiences a lot of that but I don't know if it is JUST that or epilepsy too, iyswim. He has been so clear that there are 2 things happening, and I believe him.
I agree with the poster who said it's good that some of it happened whilst we were there which should clarify things a bit.
thanks to all who've offered info / advice x