Epilepsy or 'just an anxiety attack' ???

[OldLace]

My 15 yr old has Autism. He gets anxious.

As an 8 yr old he was on a school trip and 'felt odd' asked to sit down teacher said no, and he fell to the floor, writhed around and vomited. (we found out most of this much later)

Fast forward to last 2 years. He's been having a bad time at school. cutting himself (mildly). He is run down, exhausted. Seen GP about it who advises 'watchful waiting'.
However I've observed his 'twitches' getting out of control, to the point he looks like he might be 'fitting' to me. He had an episode on the kitchen floor recently where I had to put a pillow under him and put him in the recovery position and wait for it to end.
School sent him home 4 times in the week before lockdown and told me 'not to bring him back until it was sorted'. At one point he'd had an 'episode' which had lasted over an hour and they said he was disorientated, unable to stand/sit and hitting his limbs / head as he writhed around on the floor. They said they couldnt keep him safe. The first aider asked if he had Epilepsy as he was rhythmically jerking into the foetal position and bit his lip open, was glassy eyed and exhausted (he can sleep for hours after an attack). This escalated quite quickly over the last few weeks (not Covid-worry related tho)

The GP thinks it is 'just a panic attack'.He says that epilepsy onset is highly unusual in teens and that is is 'just anxiety attacks'.
I appreciate that they can look (and feel!) really bad, but I am concerned that it might be more too?

This thread is really useful. I hope you get some further investigations done, OP. But I guess all this is going to wait for a while.

My DS 12 has been having similar symptoms, for which he's been hospitalised twice, and has now had an MRI which has come up clear. Hospital paediatricians are convinced that it is 'only tics' and some seem to suggest that he's acting. This doesn't explain why he falls down the stairs when no-one is watching or collapses when no-one is there. (Don't worry - he's learnt to be careful on stairs these days.) He's also dizzy with an occasional tremor. I'll look up the links on this thread. CAMHS refused to see him. He's not been checked for epilepsy and needs to see a neurologist, but outpatients are now suspended and we've been told not to seek help unless he loses consciousness or is unable to walk for several hours (two wasn't enough...).

I should add that we've been told that DS might be having a reaction to medication but we've not had a chance to test that out yet (can't get his medication swapped at the moment). Could something similar be happening with your DS, OP?

My 4 year old has just got an epilepsy diagnosis

Took 3 years of seizures and finally having some episodes on film to get her medicated.

I'd push for a neurology referral

Egghead68
thanks, yes he uses grounding techniques re anxiety but ds says the 'electrical episodes' are different

Chaotica ooof, that's a bit much suggesting he is 'acting'! and 'unable to walk for several hours - 2 is not enough' seems really cavalier to me - but yes i agree nothing much will happen quickly anyway at the moment. hope you and your ds get to see the appropriate service asap as this sounds really hard for him (and you!)

I had ds' Psychiatrist appt by phone today. Psych noted that School had sent ds home 4 times in the last week before shutdown saying they could not keep him safe and that this needs looked into. He said the ASD (and the anxiety as a result of that) might be masking Epilepsy and he might need meds for that. However if it wasnt epilepsy but such bad anxiety it was presenting as such then he would need betablockers and antidepressants. I said that I wanted to be clear which it was before he was given strong meds for anything and he agreed but said he felt it was 'most probably Epilepsy as ds has episodes at night in bed (where he feels most safe and relaxed) and also because he is so exhausted that he sleeps for 10+ hours afterwards - both classic signs apparently.
The Psychiatrist said he should be under a Paediatrician and also seen by Neurology but he cannot decide that and doesn't want to step on the GP's toes so said he would write a 'carefully worded letter'.
He also told me to 'film it, as much as you can'. I told ds to call me if he has an episode in his room as I want it on film to ensure that he isnt given incorrect meds.

Out of interest Chaotica I was told 'dont hesitate to call 999 if he fits and vomits or cannot stand for a period of time'.

The best advice that I can give is to take short video clips of how he is normally and also video him when these suspected seizures happen. My DS has cerebral palsy and autism, which went by fine for years until he was just over 15 years old. Then he started getting strange eye movements (focal seizure) and his head would turn with it. We started videoing them on recommendations from friends and he had an EEG which was inconclusive.
Then one day he managed to tell me "seizure coming" and for some reason I filmed it. The seizure started out as a focal seizure but suddenly developed into a tonic clonic seizure. That was one of the worst things I had seen in my life. Thankfully the seizure resolved itself before the ambulance came but because I had the video footage they were able to diagnose it as epilepsy.

In regards to the video of normal behaviour, a friend told me this as her DD is usually very vocal but a few years ago she was virtually comatose. The doctors assumed that it was normal behaviour due to her disability.

Egghead68
thanks, yes he uses grounding techniques re anxiety but ds says the 'electrical episodes' are different

He could try giving them a go when he feels a seizure coming on too. They might just help. They are part of the recommended intervention for non-epileptic/psychogenic/functional/disociative/stress-related seizures as well as anxiety.

It could well be epilepsy but have you considered the attacks may be a migraine variant, where you don't neccesarily get the headache but can have myriad other symptoms. My son had suspected epilepsy , he'd go pale,zone out, vomit multiple times. He also collapsed a few times, twitched and shook, lost bladder control. It coincided with puberty and his hormones going crazy, acne etc. We went to A&E and they thought it might be epilepsy. Then he started to have visual disturbances and tingling amongst other things. It really freaked my son out and he became really anxious about going to school on his own, he became super fatigued and despondent. A shell of his former self.

Saw 4 different GP's at our practice, all stumped, one suggested CFS, another anxiety (huh, he would be too if he had son's symptoms) but finally got the youngest one to refer him to neurology, he also referred him to opthamology. There is a 48 week wait for non urgent paediatrics in our city and they don't have a specialist paed neuro. We paid to see a paediatric neuro in a bigger city privately (we aren't rich) but for son's MH wanted to get a diagnosis and treatment quickly. The neuro was pretty certain after lots of questioning and tests that it wasn't epilepsy but migraine variant and said we should just treat with ibuprofen which didn't really cut it. We got a cancellation after a few months with the local hospital and the paediatrician there suggested a low dose of amitryptiline (not propanalol the usual teenage migraine med as son has low blood pressure) and referred him to their counsellor for kids with ongoing health issues (long wait of many more months, but great guy, talking about his anxiety around his health really helped and about the vicious circle of the health anxiety and symptoms exacerbating one another).Opthamology kindly arranged an MRI for DS which was clear.

Ds is a lot more functional now a year and half on. He sometimes gets actual headaches. He has never got back to being as confident and outgoing as before.He stays in his room a lot and gets tired easily. Anxiety definitely makes his symptoms worse but the zone outs, collapses etc have not returned. He takes ami everyday but may be tapering off soon.

Push to see a neuro and once in the system, phone regularly to see if there are any cancellations or free slots.
Good luck.

UPDATE:

We finally saw someone today.
They were thorough and did a physical exam, took bloods re thyroid (just to rule it out) took blood pressure and did an ECG (both normal)
They said they thought probably not epilepsy as he 'doesnt lose consciousness' but after I showed them a short video clip on my phone they did say it 'might' be Myoclonic seizures'.

They are going to refer for an ECG to further explore.

Has anyone had one / know what it involves / if it is definitive ??

I have all kinds of seizures. I can be fully aware through all of them but stuck. I can also reboot like a computer. There are many, many kinds and not all seizure present with loss of consciousness or tonic clonics. Feel free to contact me if you want more info.

I have all kinds of seizures. I can be fully aware through all of them but stuck. I can also reboot like a computer. There are many, many kinds and not all seizure present with loss of consciousness or tonic clonics. Feel free to contact me if you want more info.

I have all kinds of seizures. I can be fully aware through all of them but stuck. I can also reboot like a computer. There are many, many kinds and not all seizure present with loss of consciousness or tonic clonics. Feel free to contact me if you want more info.

Sorry, it posted three times!

@stepbackfromthecircles

thank you for your post.

I definitely think that the ASD led Anxiety is making the HCP's overlook possible Epilepsy too?
I appreciate that they are screening for it but the HCP we saw said: 'not epilepsy as no loss of consciousness' but Myoclonic (I have looked at some videos on YouTube, which I appreciate is hardly defintive!) looks very like what ds experiences.

He talks of electric shocks, which hurt, he doesnt know they are coming, School say he doesnt know where he is / who they are during /after, he will sleep for 16 hours straight after. He will spasm across a room / drop things/ and also drops to floor with foetal spasms. Surely more than 'just anxiety / ASD tics' ??

I just wonder how the EEC will capture it if he doesnt happen to be having an attack when he is in the hospital? will he have to stay over?

Keep collecting the evidence. Videos but also create a diary of when they happen, what he was doing, feeling before. Then you have a bank as it is rare to pick up epilepsy activity on an eeg. Mine did but it was surprising. Unhelpfully, nervousness and feeling anxious triggers absence seizures. It can all be linked. Sorry, diagnosing it is tough which is why diaries and videos are great as I always forget all of the details in consultations.

Hi again,
Yes, I am keeping a diary.
Unhelpfully, ds is a bit of a 'say whatever he thinks the adult wants to hear' type of person.
Obviously at almost 16 (and looking about 20, with good eye contact and very polite and well spoken) the HCP will listen to him not me.
I have a short video clip which I showed - the HCP didnt comment but did refer for the EEG.
It is certainly worse when he is tired / stressed.
But it also happens when he isnt. Quite a bit.
He went for a short walk with some good friends the other day.
Had to sit on the pavement as started spasming.
They eventually brought him home and he slept for 12 hours.
something is going on thats for sure.

I have to sleep a lot after them, they can be quick and not look like a lot but your brain has just done 10 rounds with the nest boxer in the world. Sending strength to you both.

Hi just to say we managed to see a Pediatrician.
He said he thought it was 'probably just anxiety' although ds was clearly telling him that 2 types of things happen, 1 being a classic anxiety attack and 2 being 'an electrical storm that hurts and I end up on the floor and have to sleep for hours after'. They took bloods in case it is a thyroid issue and did a heart check - all fine.
At the end I showed him a short clip on my phone which shows the very end of an attack (so about 20% of what it can be like) but he didnt say much.
Had my copy of his letter to GP today - said it ;was established that these were anxiety attacks; (news to us so it must be GP who has said that to him as Psychiatrist thinks epilepsy) and no mention of the clear descriptions ds has given!
But does say however upon seeing the video clip of 'all four limbs making spasming movements it is worth considering the possibility of Myclonic epilepsy as i did wonder if these were Myclonic jerks'.
So ds is referred for' a standard EEG'.