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 :(

Phone the secretary of the consultant and ask to be informed if there are any appointment cancellations or rearrangements and explain the missing schooling. They might be able to get him seen sooner.

@52andblue
The school does not sound very supportive. Is it mainstream of specialist? That is a safeguarding concern and you could ask to meet with their safeguarding/welfare lead and raise concerns. Ensure you get it in writing too. Schools can be really tricky to get the support you need in place initially.

Additionally, I would try to have a meeting before returning to school to start a management plan and ask what they do for other children who are having a seizure (if you have not done so already). Some schools may phone 999 every time and follow the paramedics advice, some may allow for rest and recovery and phone you. It could also be an option, and what sounds a safer one, to let him sleep it off in the sick room and then either return to schooling or await your collection.

He will know his own body better than anyone, it's a good he has you to support him. A seizure can look terrifying to those observing it and those experiencing it. Having your support will be reassuring him.

Another thing you can do (if you're not already), and ask the school to do too, is complete a seizure chart. There may be some templates online. You may be able to recognise triggers/patterns (this is for epileptic and non-epileptic seizures). It will include presentation of the seizure, duration, recovery but also the lead up to the seizure. Don't just include immediate events but think about the weather, hydration, bowel movements, any stressors immediate and over the past few days, tiredness and sleep the night before, nutrition and trying new foods/drinks, illnesses and infections etc. The more detail the better.
This will be really helpful for DS's neurologist and and CAHMs to look at and review. You will also be able to see if there is a pattern at school, for example: same teachers/subjects, time of day and then use it to help the school recognise any triggers. say he was having seizures at around 12 while at school. It may be he's been unable to use the toilet since the last break or his blood sugars have dropped just before lunch and may need to have access to a snack. Or it may identify one teacher can support DS well during the seizure and use them to advise other staff on how they do this.

If your son does have epilepsy the neurology team will come up with a treatment plan. This will involve regular medications to control seizures if appropriate and possibly rescue meds which are stronger drugs to be used in the event of a severe seizure. It will outline when it is appropriate to call an ambulance etc . Rescue meds will be held in school for emergency situations as well.
A detailed care plan will be drawn up for school and signed off by the neurolosgy team and he should then be able to return as normal. The school will be nervous if there is no epilepsy plan in place at this stage as they don't want the responsibility of making decisions on major things like this. Hopefully you will get some clarity at the next appointment !

Hi there OP, posting as a school nurse who has dealings with schools anxious about keeping kids with medical conditions safe. Firstly, as others have stated, he will need a "care plan" I.e. a management plan including details of meds, possibly emergency / rescue meds if fits continue, staff training will need to be organised and school may need to apply again for an EHCP for extra funding, though tbh at his age this is unlikely. Unfortunately schools are strapped for cash but legally have to be able to "keep a child safe". One school I know had a buddy system whereby a young person had a classmate to accompany between lessons and a lift pass to avoid using the stairs for example. Finally, the care plans always err (rightly so) on the side of caution so school will always call a parent to collect after a fit and if fit continues ongoing for more than couple of mins they will call ambulance. Please get this hammered out in detail with the specialist nurse at clinic and take into school, maybe inviting school nurse to attend also, but you could check with the school ahead of time if they are up to date with their epilepsy training ( even tho not sure he has this dx as yet). Good luck OP, this is incredibly stressful for you and your son, but sounds like you are on the right pathway.

@nearlytweeny

thank you that's really helpful x

would you say this would be whether he actually has epilepsy or the non epileptic seizures ? (because to me, although ne seizures are less medically risky perhaps the risk of falling down stairs etc is similar?)

I would guess they could create a "Seizure management plan" without the epilepsy label, if required, but still would need to get all details fine tuned for him for school to feel confident they could look after him safely. The neurology team will have done this before lots of times I suspect so could advise you best, but you may need to be quite insistent to get it done ASAP after results and avoid missing more school.

@nearlytweeny

thanks, that's really helpful. I am not sure if school will say NO in Sept. They did in March, but allowed him to go in for the 4 x 1/2 day sessions 'at my own risk' (I was not required to sign anything, but that was the spoken 'deal' with the DHT). In fact, he only managed 2 of those, but didn't have any 'activity' during those sessions.
I would prefer that some sort of Plan was in place before he returns.
School is well meaning but disorganised (didn't notice him missing hours on a previous occasion and have said many times that they 'do not have the space or staff' for kids with SN/SEN & will be overstretched when they go back I have no doubt. I wonder if I could insist on this? I think if its actual Epilepsy probably, if not then ???

Well - I have an answer

A chap from the hospital called just now to say defo NOT epilepsy.
Really pleased!!

I did ask what he thought might be going on to cause the 'seizure like activity' (I called it that as other HCP's have) and he snapped: 'don't call them seizures, they are NOT they are merely movements, volitional movements as the GP suspected'
the GP has only met ds once and the local Consult and his Psych both thought Myoclonic epilepsy (said so in writing) so I thought his tone was a bit snappy. I asked what 'volitional' meant and he said: 'it's like nail biting, the child might not realise they are doing it but they can stop if you tell them to firmly enough'.
I wonder if this all means it is just stress coming out in a physical form, but I do think it's worth considering how he can be helped to get that under better control as it is quite severe when it happens and he finds it painful and a bit frightening so its not really like nail biting?

We have appointments with the local Peadiatrician and his Psych in the next 4 weeks so we can discuss that then.

Thank you for all input.

@52andblue honestly please get referred to someone who has experience of dissociative seizures.

They are seizures, they just are not accompanied by EEG activity as they have a different cause. I suspect CAHMS may already be looking into this for you but do check.

@IamShark
Can I just ask for a referral, though ? (I am very rural here)
The Psychiatrist is a nice chap but is keen to put Ds on SSRI's and betablockers. He 'was waiting to see which medications were appropriate' until after the EEG.
I am not keen on strong meds aged 15 :( Obvs if they were needed for epilepsy that would be one thing but I'd like to know what other types of support Ds could receive as well (not necess instead of)
Going to do some reading about dissociative' seizures' now - thanks.

@52andblue

I'm glad that your DS has had a swift diagnosis - the relaying of this, though, is really shoddy - blimey. As IamShark has said, he needs a referral to a neuropsychiatrist or a neurologist with an interest in functional disorders. Unfortunately, current treatment is talking therapies, CBT, for e.g., and antidepressants. There are some useful website to give you more insights:

www.nonepilepticattackdisorder.org.uk/non-epileptic-attack-disorder/

www.fndaction.org.uk/non-epileptic-attack-disorder/

www.neurosymptoms.org/blackoutsattacks/4594357995

@ProfessorRapson

It was helpful to know it isn't epilepsy Yes, v pleased.
But it is still something and he needs more support than 'just tell him not to' for sure. The tone was a bit weird too. Still, I do have the option of seeing our first Consultant (the one who said Myoclonic) so we will keep that appointment (they are both on the same day, I'll cancel the unhelpful chaps one). Not because I think he will say different, but he might have some more constructive ideas on how to help Ds handle it.
thank you for those links, very helpful indeed. x

@52andblue Yes, unfortunately you can't just ask your brain not to, it's entirely involuntary and isn't "bought on" by the people that have them; I feel very cross on your behalf about what was said, they clearly have no idea what they're talking about. There's a lot of misconceptions and pejorative language attached to functional disorders even amongst many HCPs. If your son gets a warning prior to having a seizure, there are some grounding techniques that can help - I think there might be a download on the neurosymptoms website - trickier to deal with if he doesn't have a warning. I'm sorry, but I've no idea about what provision there is for children with functional seizures, even as an adult it's quite difficult to access help and the waiting times can be very long. Wishing you both the best

.

Hi I'm 43 & I have Juvenile Myoclonic Epilepsy with Photosensitivity which is medicated, I was diagnosed aged 7.
I also have Schizoaffective disorder which was diagnosed around 2012 but have suffered from MH problems since childhood.

I have to confess that when I was 15 I suffered from what turned out to be pseudo seizures.
They were different to my Epileptic seizures as I didn't lose consciousness & they didn't show up on an EEG.
I also had an eating disorder at that time - I didn't eat as I was constantly nauseous.
The Neurologist basically said that the pseudo seizures were caused by stress (I was taking GCSES, i had fallen out with my friendship group & was having boy trouble etc). I was the kind of teenager who found it difficult to cope with any type of stress so my body reacted physically.

Once I knew the pseudo seizures were caused by stress I felt I could overcome them.
My school said I could return & take just 4 GCSEs & not do sports which I hated because it was mixed sex.
I found out when I was ill that some new friends I'd made earlier that year were actually really good friends so I could look forward to hanging out with them.

So gradually I relaxed in day to day life & the pseudo seizures gradually stopped.

I do remember that every time one started I would say to myself it's just stress, it's just stress, & it wouldn't last so long.
I feel that is how I overcame them, by identifying the stressors in my life & by minimising the effect of the seizures in my mind.
The nausea also went & I began to eat normally.

But the Neurologist had referred me to a Child Psychiatrist & my parents chose to cancel the appointment because of the stigma there was in those days.
It's a shame because I then developed other MH problems which affected my life for years.... but I never had pseudo seizures again.

@52andblue I think your sons problems sound very similar to the symptoms I was having.
I would definitely listen to the psychiatrist & don't be too alarmed at trying the meds he suggests, he will tailor the doses to suit your sons needs.
Also try to get some psychology involvement to help your son deal with his own causes of stress.
I found out the hard way that the mind & body are extremely complex!

I felt incredibly ashamed when the Neurologist told me the seizures were pseudo seizures but it was wrong to feel that way as I wasn't 'making them up' or 'faking' them.
The mind was actually just reacting in an extreme way to stress, same with the nausea in my stomach.

Wishing you & your son well x