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...

As gilly3 said earlier the guidelines for grand-mal or tonic-clonic seizures are to seek medical help after 5 minutes. My dd has emergency medication that we can give then and usually we do call 999 as well. My dd has had what is referred to as "status epilepticus" which is dangerous if untreated. There has been no evidence of brain damage though so think this may be rare. This is difficult to assess though as brain damage can cause epilepsy so it's not an exact science.
My dd was diagnosed with epilepsy when she was 3 years old but tests such as EEG and MRI are still negative. She was given medication straight away because of the severe grand mal seizure and there is a family history of epilepsy. Once the correct dose of medication is given, epilepsy can be relatively easy to control and just needs monitoring to allow for growth.
On a positive note once my dd started her medication she did much better at pre-school and her speech and concentration levels improved as well.

Good luck at your appointment Vixen1.

My DD 9, has something similar to these absent sezures, now with my DD its like she freezes in time, this can be totally random when it happens and there is no movement, blanc stare not even a blink when it happens, you can shout, bang, walkpast her, anything and nothing, touch her and she just says "what" totally oblivious that its even happened, now this can last for seconds to minuets, the longest so far was 15-20 mins. and at the time she was at a friends house and totally freaked out the parent. school claim they dont see it but for weekends/holidays when she is at home you can tell when it happens.

my dd as these and drop attacks how did you get on today?

Hi all,

Paed was amazing as ever (think I might be a little bit in love with him )!

DS has an EEG in a couple of weeks so we'll see what that shows, we'll get the results at his next appointment at the end of Feb.

The only thing that worried me slightly was that, just as we were leaving, he looked at DS for a minute then said "There - did you see that just then?"
I said "No, what?"
He replied "Just then might have been the tail end of something because he was staring off to the side, in a trance then his eyelids flickered and he looked back at us"

Our Paed doesn't usually "see things" that aren't there so he must have witnessed something he felt was significant

Vixen - don't stress too much about what your paed saw. You are already thinking something is "not right" and in a way it is good that he may have spotted something - as it will help him with his diagnosis.

Its good that they are investigating thoroughly and you won't have too long to wait for the results.

As starfish said, try not to worry about what the paed saw, if ds does have a problem, anything that helps to speed up the diagnostic process is actually a good thing. I know it won't feel like that to you though.

Good luck for the EEG, let us know how it goes.

just remembered,my friend's son who has asd has 'absences'but they are not epilepsy-good luck for later and hope you get some answers;it must be a worrying time

hi vixen,glad your getting the help you son needs,keep posting,so we can follow your story.hang in there.xxx

Thanks so much for the support, it means so much during this uncertain time

Does anyone know if I'll be allowed to take a camera into the EEG with me? I know it sounds odd but I think the only way DS will tolerate wearing a "silly hat" is if I can make it into a fun game where he can see a photo of himself...

Vixen - the fact that your paed has "seen something" is really half the battle - we had several appointments before they were able to determine what was going on and decide on a course of action. Until that point I was told to try and video the fits - quite how I was supposed to catch a random, split second fit on film I'm not sure. Finally we got "proof" as ds had a jerk in the middle of his eeg which was really good iyswim. As regards the eeg itself - was really surprised with ds as he just accepted the hat - showed him what he looked like in a mirror and then we just read books and did jigsaws for 20mins while they did the test. We also had a sleep deprived eeg which showed he was fitting worse in his sleep.
Hang in there - the uncertainty and fear is all you can think of - I was there myself 6 mths ago but I can honestly say ds is a different child now on medication - more sociable, outgoing, happy and no more "episodes" :o Good luck and hugs

what a good idea vixen,to make it fun,i used bubbles when my son was young and having his first eeg,any form of distraction that works for your son,should be welcomed,but if in doubt,maybe a call to the secretary should answer any questions you have.xx

Vixen sure the technician won't mind a camera. When DS had his we gave permission for it to be filmed too (tis a university hospital) and she was so good with him and told him he should be on Doctor Who.

At that point DS was in status epilepticus and was all over the place but she was so kind and lovely.

Hope it goes ok.

Vixen - sorry it's been a while since I posted on this thread! Glad you've seen paedoatrician and EEG scheduled shortly. I know what a difficult time this is - hugs.

I agree with Starfish and Farming, don't worry unduly re him nioticing something. If anything it's a positive as he's seen it first hand and not completely relying on your description of the seizures. (The EEG may not show anything as it's a short snapshot if the brain activity so it may be that your DS doesn't have any irregular activity at the time.) The fact that he has seen a possible seizure may help him with his diagnosis.

Re the EEG itself, I agree with the suggestion of speaking to the secretary. My DD was not much older but watched "Aristocats" during the EEG (got upset when EEG finished as the film wasn't over). They also usually have toys in the room. Maybe the Secretary could arrange for a play specialist at the hospital to keep him distracted?

If it is epilepsy, please take some comfort that the majority of people can be controlled by medication (my daughter isn't but this is more exception than the rule). Also a number of epilepsies are classed as "childhood" epilepsies and as such there may be a significant chance that your DS may grow out if it in puberty.

Wishing you the best if luck and please keep us posted on how you are getting on.

Sorry guys, me again with another question

If someone has Epilepsy do they only experience one type of seizure or is it common to have a mixture of types? Is it possible that someone might have a drop seizure one day then a partial complex seizure the next?

Only curious as DS also falls quite often for no apparent reason. I'm fairly sure it's nothing but it has got me wondering slightly about possible drop attacks...

Thanks again x

You can get absences in conjunction with other forms of epilepsy.
As I've said, my dd only has absence epilepsy. What sort of falls do you mean? If it's falling as in appearing to trip up over nothing then he's like my dd who does this loads, especially during a growth spurt. I'd have to google drop attacks to know more about it but I suspect that it involves sudden slumping to the ground rather than a tripping type of fall.

I made loads of notes (a diary) of dds seizures and general behaviour. This was really useful to look at after she started meds because it made me aware of what was caused by her epilepsy as opposed to being a side-effect of meds (tiredness, headaches etc). I really do recommend keeping a detailed diary.

Hi Vixen. Have only just noticed this thread, but just wanted to pop on and say hello! DS has epilepsy, but his was the other round to many children in that the absences only came after the tonic clonics and then the myoclonic jerks. He's had almost every type of seizure I think, but I don't think that he's had drop attaacks- like you we used to notice that he fell over a lot but as Kissingfrogs says, I think drop attacks are more lkike a crumble to the floor.

We're due to see our consultant in a couple of weeks - we need a med review I think as although DS is pretty well controlled on a low dose of rufinimide plus the ketogenic diet, his jerks are coming back to the point of being 20 plus a day. It might sound a lot, but after him being in non convulsive status for almost four months last year, it's a pretty good place

Good luck with the EEG.

hi vixen,have you got access to a video camera,by videoing my son at different times,was how my son was first diagnosed with epilepsy,as sometimes it is very difficult to dsecribe to doc what you are seeing.we found that by videoing for an hour at a time ,as obviously you don,t kmow when an episode is going to take place,is really helpfull,as kissingfrogs said ,adiary will also be a great help.if you do see something on tape you are unsure of,make a note of what section of vid its on and take camera and tape to next appt,its also usefull to watch it back yourself,as ,like us we saw lots of episodes that although we were in the same room were missing,eg,eye rolls ,small jerks etc,hope it helps you too.good luck.xx

Thanks for that advice everyone.

I really don't think he is having drop attacks as he does seem to more trip over nothing as opposed to a "crumble" which is a really good description (thanks fatzak!).

Gilly - How did you video for an hour at a time? Did you prop it up somewhere and hope he stayed in picture or did you actually holdthe camera? I'd love to be able to video him remotely if I can as his twin brother has started to notice that I look at DS all the time and I don't want him to feel less loved if you see what I mean. I don't know what's the best surface to balance my camera on...

hi vixen,no ,it is a bit time consuming ,but worth it,just video him and his brother playing normally,you,ll be suprised what you pick up,if you know they are going to stay in one room for a while,you can prop the camera up,or get a friend to help,we played with some of my sons favourite stacking boxes and posting puzzles,which made him concentrate,so he wasn,t that aware,hope that helps.let me know how you get on if you do it.xx
p.s any surface which is down at their level is good.xx

Hi Vixen, just popping by to say hello and offer you a bit of a hug, you must be so worried about these episodes. It seems that everyone's experience of epilepsy, (if that is what it is) is very different, but always worrying for the parents.

I can only offer that my DS has funny blank moments when he was little, and then when he was about your son's age he started having a few more obvious absences which seem to be sometimes called drop fits. some of them did involve him falling over or dropping to his knees, but they only lasted less than half a minute before he came round. he used to have about ten tiny ones a week.

we didn't medicate to start with but when he started school he started on medication, the fits were getting a bit worse and he did have a couple of what I call flapping fits ( tonic clonics). He hasn't has one for a while, and now he's coming off the medication at 7 YO.

It might be worth having a look at the epilepsy action website or getting some advice so you know what to do if there is a bigger fit at anytime: It's always good to know your first aid good luck with the videoing if you give it a go

Hi. This is quite an old thread, but I hope I can still get some response. I look after my grandson one day a week. He's 2 years 10 months. Recently he has started to stare vacantly; that's it, just stare, for about 15-20 seconds. If you put your hand in front of his eyes it 'breaks the spell'. Today my daughter, his mum, asked if I thought he is normal and I didn't know what to say because I worry myself. He has no other symptoms that I know of. His speech is a bit slow developing; he has a pretty good vocabulary, but doesn't make sentences very readily and tends to gabble. Should this be investigated?

It sounds like his mum has concerns of her own, if she has asked you if you think he is "normal". If he was mine I would make an appointment with GP for referral to developmental paediatrician - not to say that I think there IS something wrong, but if there is she needs to know, and if there isn't then no harm done. Perhaps she could make notes on all the behaviours that concern her to take with her.