Vacant episodes, possible seizures - help!

[vixen1]

Hi all,

DS (3 yrs, possible ASD) has been having vacant episodes. I noticed them a while back but just thought he was daydreaming or tired.

Recently though the episodes have become a bit more strange, for want of a better description.

There are three distinct events that stick in my mind and have prompted me to leave a message for his Specialist but I'm still waiting to hear back.

The episodes are as follows:

Episode1 - I was putting DS to bed, he was lying down. He stared off into space, seeming to be completely unalert but awake IYSWIM. Then his eyes started to kind of shake. After a few seconds I gave him a little shake to try and rouse him. After a few shakes and calls of his name he "came round" and smiled at me as if nothing had happened.

Episode2 - He was having a wee on the toilet and starting staring vacantly again. Then his arms jerked upwards and he grimaced (like he does when he's flapping but he wasn't flapping, more just a sudden jerk). He made three jerks with a second or two between each one then "came round" again.

Episode3 - The childminder called me yesterday to say that DS was crouching down and started staring into space, completely unalert. After a few seconds he suddenly and without provocation punched her daughter in the face. He then realised what he'd done and was beside himself with remorse. She said emphatically that she believes he had no idea what he was doing and it was completely involuntary. She didn't even discipline him for it, so strong was her feeling that he hadn't meant it.

Do these sound like seizures? What should I be looking for? If they are seizures could it be really serious? And are these type of episodes related to ASD in any way?

Any thoughts or advice greatly appreciated...

ds (4 ASD) has just been referred to the neurologist & for an EEG to investigate 'absences' :(

His tend to last 10-30 seconds & he'll stop what he's doing, his face will go slack & we won't be able to get his attention at all (happens 1-3 times a week). He's also had a couple of episodes where he blinks very quickly while this is happening & one which could have been a drop attack where he lost tone completely & collapsed. They are quite different to when he's daydreaming or even just ignoring us.

Having ASD increases your risk of having epilepsy ... the paed took us completely seriously, we don't know that they are seizures but they need investigating.

Yes this should be investigated via an EEG. If you don't hear,ring the paed again soon.

My daughter developed complex partial epilepsy 5 years ago and, I'm sorry, but these do sound like seizures.

I would make an appointment to see your GP as soon as possible and request an urgent referral to a paediatrician with a special interest in epilepsy. My daughter has several health issues and is dyspraxic. We have been through several consultants over the years and it makes a big difference having one with a special interest in epilepsy. It may be that your existing specialist does?

It's also worth finding out which hospitals have specialist epilepsy nurses attached. They are invaluable in terms of needing to speak to someone quickly and eg liaising with schools/nurseries etc. (we didn't have one in our previous area which caused a number of problems with getting DD help and support at school.)

Let us know how you get on.

Also The National Centre for Young people with Epilepsy are brilliant for advice. I don't have their details to hand, but if you google them there is a helpline number. They can give practical advice but may also be able to help identify a good paedtrician in your area. Alternatively, call your local hospitals and ask to speak to the epilepsy nurse. Check that she covers your area and ask her to recommend a paediatrician with an interest in epilepsy.

I have a daughter with absence epilepsy. She would have typical absences (stop what she was doing, stare into space, no recollection of them). She also had ones with automatisms where she would go for a walk, so it's not unusual to do unusual things during an absence.
Like the other posters have said: you'll have to have and EEG to confirm. It was all very scary and worrying at the time, particularly as I had no knowledge of epilepsy and I was really stressing about side-effects of meds.
Dd has been on meds for nearly a year now and is absence free with a very hopeful outlook.

Thanks so much for your replies, the advice on here is always invaluable.

DS actually had an EEG when he was about 22 months old because they were concerned about what has now turned out to be his flapping. The EEG came back clear - does that completely preclude epilepsy or would he have to have a seizure whilst having the EEG for it to show up?

This is going to sound like a really stupid question but why do they medicate epilepsy? Are the seizures dangerous or is it possible that they wouldn't medicate if it wasn't affecting his day to day living? Sorry for the complete ignorance

I thought absences were common with ASD...but not always be epilepsy? I am ignorant too... (now and more concerned).

I was thinking about it yesterday as DD (5) waved at me from the school window, getting her coat off her peg, she looked right at me then glazed over, stopped moving and the other kids just carried on around her...I started counting (15 seconds) and waved again but no response...she came round and carried on.

We have been to see the paed this morning about some apparent absence episodes that our ds1 (8, ASD).

Ds has only had a handful (that we know of) They weren't concerned as we haven't witnessed any personally (although they have been witnessed by his brother, best friend, first cousin and Educational Psychologist) and told us that they want us to watch for and keep a diary of, any strange episodes and they are going to review him in four months. The paed did say that vacant episodes in people with ASD are fairly common and in most cases nothing to do with epilepsy.

He did say however, that if we witness any strange blinking during the episodes or sudden arm or leg jerks we should take him straight back, so based on that, I would definitely ask for an urgent referral.

They medicate absence epilepsy because long-term, the absences can cause damage to the brain and the ones we see are often the tip of the iceberg with some children having hundreds of mini absences every day that are so brief that they go unnoticed. Obviously this means they miss a lot of what is going on and affects their whole life, from peer interaction right through to their education. It was described to me as like living your life with someone else having their finger on the fast forward button. Every time they press the button you lose a piece of time and have to start over making sense of what's going on around you, this is a particular problem when they are trying to keep up in school. In my nephew's case, by the time they discovered his absences he was wetting himself every time he had one and having to change his clothes literally a couple of times an hour as well.

The good news is that absence epilepsy can be controlled and very often children outgrow the absences once they've passed through puberty. They discovered my nephew's when he was 7. He's now 16 and being successfully weaned off his medication.

Thanks for that Moosemama, it makes a lot of sense and is somewhat reassuring. Did they say what the significance of the jerky movements was?

moosemama are you sure about unmedicated absences damaging the brain ? My ds2 (11) was diagnosed with absence epilepsy and i opted not to medicate. He is due for review next month.
We are also having lots of problems that may or may not be aspergers.

No they didn't say, but I think - and I'm no expert so this is purely from googling - that its more likely to be a seizure if there's involuntary movements involved, so they would want to do an EEG rather than just watch and wait.

EEGs don't necessarily prove either way unfortuanatgely. DS has had seizures both at home and while in hospital (when he got an eeg fairly quickly afterwrds) and his EEGs have always come back as clear.

starfishmummy - Has your DS been diagnosed with Epilepsy despite the clear EEG? How do his seizures present themselves?

Hi vixen 1,i have a son with epilepsy,he has several different types of seizures,he is 12 now,his epilepsy started in much the same way.
if i was you,i would insist on another eeg,but ask for one in a portable backpack,so that your child can carry on as normal,and it will give a longer reading,and be less stressfullthan a hospital stay.
my son is also autistic,but both diagnosis were seperate,and came a few years apart.
again i am no expert,but from what i do know is that generally absences,don,t cause damage,but seizures lasting over 5 or more can.my son has a rescue med after 5 minutes but he has tonic clonic seizures.
don,t leave it too long before you seek help,THE NATIONAL CENTRE FOR YOUNG PEOPLE WITH EPILEPSY[NCYPE],WILL HELP,they know their stuff,and if sadly your child does have epilepsy,you will save yourself alot of time and anguish,by contacting them first,but will warn you the referral time can be long,but worth it.
i will keep everything crossed for you ,and if you need to talk,please post me,i will be happy to help.GOOD LUCK.XX

Thanks Gilly, your support means alot. When you say your son's epilepsy started in the same way do you mean that they started as vacant episodes and gradually built up to tonic seizures? That's my concern for DS is that his episodes now have a physical element and I'm worried that may get worse. I will definitely check out that NCYPE... off to Google it now in fact

Just spoken to the Specialist's secretary. She was SO lovely and made DS an appointment for tomorrow afternoon. He has a special interest in Autism so he's probably fairly well versed on Epilepsy. I have absolute faith in him and know that if it was beyond his remit he wouldn't hesitate in making an onward referral.

They are/were major seizures - the tonic-clonic convulsions variety rather than absences. They have often been when he is "brewing something" particularly if his medication hasn't been reviewed for a bit (as you probably know dosages need to increase with weight on some meds). His last seizure was odd as his arm and leg were jerking uncontrollably but he was awake and knew what was happening. Luckily he has been seizure free (on a low dose of meds) for over 2 years now.

His Paeds did not really want to say it was epilepsy as he has brain damage due to severe hydrocephalus and they think it is probably that which causes them although they do use the term epilepsy with us and we put it on official forms (DLA, school etc) as it is easier than a long explanation! Although on his latest post clinic letter it has gone back to "seizures"!

They do sound like absence seizures, and perhaps partial seizures as well (it's the grimacing part that rings true for me - I work with young people with ASD and epilepsy in residential care)

It's good that you've got an appointment tomorrow, keep and open mind and just remind yourself that there could be a number of other explanations for it, but if it is epilepsy there's lots and lots that can be done these days to help those who are affected by it to live seizure-free!

Good luck tomorrow!

Absences dont damage the brain - as far as we're aware!
OP my first reaction was NO MEDS. However, in dds case it was a must for the following reasons:

• danger - when she walked during an absence she had no sense of danger e.g walking staraight into roads.
• frequency - her seizures began to rapidly increase in frequency. EEG showed 4 in 30mins.
• dds feelings - she was always aware of the walking siezures as she would suddenly find herself in a different place, and she dreaded this.

Like I mentioned, dd had automatisms. These included turning her head and chewing (plus the walking). It did make me think it was more than absence epilepsy ot that it would evolve into another type, but the meds she is on (ethosuximide)is soley for absences, and it works, so absences it must be.

Its such a relief to hear that absences don't cause brain damage. I have been worrying about the Consultant wanting us to 'watch and wait' for precisely that reason.

My SIL told me they do and I just assumed she knew what she was talking about as its her ds that has them.

Sorry for the misinformation Vixen1.

Thinking about it - I wonder if she was just saying that to push us into getting ds checked out sooner rather than later?

Hi Vixen

You could be describing my ds at the start of this year - just turned 3, funny vacant periods and jerks - both upper body and full body jerks. Worse when tired, stressed or having a tantrum. Spoke to doc who referred us to paed - had eeg which showed abnormal discharges but nothing which "fitted" an epileptic condition. Then MRI which was clear. Various metabolic tests, blood tests etc for 5mths. By Sept ds had constant bruising on forehead from head-butting whatever was in front of him during the jerks - to the point that we bought him a scrum helmet to wear for protection. At peak we had 25 + jerks a day. We were asked to keep a "fit" diary between our Aug and Sept paed appointments, then 3 days before seeing paed he had a grand mal which resulted in blues and twos dash to hospital. Medication started 2 weeks later and I'm glad to say he has not had any fits since the start of October [fingers crossed smiley]. We were initially reluctant to medicate but having witnessed the grand mal, I would be terrified what damage another could do (ds also has severe speech delay don't know if its connected) Also it couldn't have been doing his head or brain any good constantly head butting things.

We have been told he has epilepsy but as yet not what type apart from its a form of Myoclonic jerks.

Sorry for the long post but hope it might help.x

btw good luck for tomorrow x

hi vixen,firstly good luck for tomorow,xxx
yes my sons epilepsy did start that way,but one i don,t want to worry you,and everyones epilepsy is so different,so until you hear from specialist,please try and take a big deep breath,not easy i know,have felt the same as you do now,but until you know what you are dealing with,you may be worrying for no reason.will be happy to post you about my sons story if you would like me too,but i don,t feel that time is now for you ,you are worried enough,FINGERS CROSSED FOR YOU.XX

Thanks so much for the support everyone... I'm SO nervous about later and since the appointment isn't until 4.30 I'm going to have to keep myself busy!

Really appreciate all the advice, I'll let you know how we get on xx

Sorry - me again!

Just a quick question:

Good to know that absences don't cause any damage to the brain but how about other types of epilepsy - do the seizures from those cause damage?