i feel desperate

[hev]

steven keeps going blank not knowing where he is or who i am,today he done it and nearly got hit by a car,got an appointment in morning,im worried ick,any ideas,could it be epilepsy?i feel desperate

[bikergal]

<'> <'> <'> Hev, epilepsy is certainly a possibility but there are other things it could be. Easier said than done but try not to worry too much or you'll end up in a real state. That said it is a worry and that's what us mums are good at doing. Hopefully your appointment tomorrow will put your mind at rest. Take care. <'> <'> <'>

[smiley]

<'> <'> <'> <'>

 

Poor guy - and poor you!!! <'>

It could be anything hun - try not to worry too much, might even be a virus - there are lots of weird ones going about at the moment. Let us know how it goes at docs.

 

<'> <'>

Edited February 13, 2007 by smiley

[bid]

You're doing the best thing by taking him to your GP, so <'> <'>

 

Bidx

[Suze]

<'> , hi hev, there was a thread on this last summer.I posted about my son, switching off and losing time, not being able to remember where he was or what he had been doing.He does it at home and school.After talking to the gp, we put it down to either, sensory overload or a mild form of epilepsy or a petit mal seizure.I googled on the net and found quite alot of info.It seems the milder seizures don,t usuallly need any form of treatment.I would see your gp and discuss all this with them,best of luck suzex.

[hev]

suze would it be poss for you to do a link to the thread,i cant find it,if not,any idea what section it was in,thanks

[elun1]

<'> Hi Hev, my ds does his too. I know it's very very unnerving. He's been tested twice for epilepsy but normal results from both eeg's. It's hard to know whether it's epilepsy or part of his autistic tendency to tune out. You are doing only thing you can do by asking for him to be referred. Take care

Elun <'> <'>

[krystaltps]

Hi Hev, poor you two <'> . Next time it happens click your fingers in front of his face, if he blinks there's a good chance it's not epilepsy. C sometimes goes blank, and doesn't respond, but if I click my fingers in front of his eyes he blinks and "comes back" - his ANST puts it down to temporary internal overload (too many thoughts buzzing about at the same time).

My younger son has epilepsy, and when he's going through a bad phase he has absences (petit mals). These can last from about 8 seconds to about 25 seconds. If I click my fingers in front of his eyes, there is no reaction. Absences are like when a computer freezes, the brain does the same thing - it temporarily stops. R is lucky in that his seizures are mostly nocturnal, therefore he does not require daily meds. He can go into status (when one seizure follows another in quick succession, until they run into each other), this is where he is not lucky, as this is very dangerous, and he needs midazolam and phenytoin to stop them. So absences on the grand scale of seizures are not bad seizures, they are very unlikely to cause damage to the brain. They are what are classed as clean seizures, as nothing else happens than merely pressing the pause button.

However, because of their nature - they can happen when in the bath, crossing the road, etc, and therefore if they are frequent, they require medication - to minimalise potential accident scenarios.

Your appointment tomorrow will hopefully set your mind at rest, but GPs are as bad with epilepsy as they are with ASD. If you are not happy with what you hear, go elsewhere or request to see the paed. R has had seizures all his life, but wasn't dx until he was 5 - and that took a 12 hour status seizure to actually get the local gps to accept that their was a problem.

Try not to worry (I know it's like saying "try not to breath"), it's probably not epilepsy... and even if it is, it's not that bad. Loads of kids have epilepsy and grow out of it. R never will as he has a malformation of the brain, but even he is seizure free at the moment and has been for 13 months. Children's brains are growing and changing everyday, and it's easy for the wiring to go temporarily wonky.

<'> to you and Steven.

[krystaltps]

When I read through what I'd written, I thought I'd made epilepsy sound quite bad by referring to R's seizures- that wasn't what I meant to do. R's is a very rare case - I was told before his MRI that the chances of them finding a problem were extremely rare - he's just one of the unlucky ones. If your lad had a problem like R's you would have known a long time ago. What I'm trying to say is even if he does have epilepsy, it's very likely that it will be temporary - caused by hormonal changes (due to his age).

I'm rambling again, sorry. Anyway good luck tomorrow, hopefully your gp will be more clued up than ours - afterall we do live in the middle of nowhere.

<'>

[hev]

thanks krys,i am worried that when i go to the gp that he will dismiss it like steves aspergers took so long to get diagnosed,when steve is having a confused moment i say steve its only a funny turn,mums here and he comes right out of it,any ideas what it could be,cos if it was epilepsy he wouldnt come out of it so easy would he?could it be a panic attack?

[krystaltps]

Hi Hev, from what you've said it sounds less likely to be epilepsy - as you can "get him back". But I would still ask the gp to investigate it. There are hundreds of different kinds of seizure, and many types in which the child remains conscious - R is conscious during his nocturnals, but not his absences. Because of his age, I would definately request an EEG (takes 20 minutes, and most hospitals have a few technicians - so it's not as if you're asking for a very limited resource).

It sounds pretty much like C though - he does a similar thing, and I've got to touch him, click my fingers in front of his eyes to get him back. His ANST isn't concerned about it, she thinks it's due to temporary over-load, and it happens when he is excited, buzzing, or stressed. He talks about all the thoughts whirling about inside his head (hence the melatonin for getting to sleep, it "stops the thoughts" because it makes him too tired to think).

Want to hug you, because I know how awful it is to be worrying about seizures. I suppose in a way I'm lucky - I could spot a seizure at 100 paces!

You could have a look on the NSE website

http://www.epilepsynse.org.uk/

It has been a lifeline to me, and it has a really good forum (not as good as this one though )

It may help you organise your thoughts a little bit before tomorrow's appointment.

<'> <'> <'>

[Kathryn]

I hope you find the cause of this, hev.

 

L used to have "absences", similar to what Suze has described. These mainly happened at school and I think it was due to overload whan a situation was too much to handle. She had an EEG which didn't reveal anything significant.

 

Good luck for tomorrow: you're doing the right thing.

 

K x

[Mother in Need]

Am interested in this thread as my youngest (NT) has funny turns as well (interesting that we too name them as such), he has those little absences but ALSO gets very dizzy often, and sometimes his heart goes mad and he almost collapses, is confused, extremely tired, headache, and takes longer and longer to recover (1 1/2 days the last time). He has had an ECG (normal) and is awaiting an EEG but that prob won't be for another 3 months, and meanwhile he is scared and so am I, and I don't dare take him up the moors or anywhere steep (ahum, we live in Cornwall), as it is hell getting him back home after, apart from risk of injury, and I have AS son to deal with as well who can't see he needs to take second seat while all that's going on...

 

Has anyone experienced anything like this?

 

Sorry Hev, don't mean to hijack your thread, tell me off if I have...

[hev]

mother in need,course you havent hijacked my thread,god its worrying isent it,well we went to docs,we told him everything,he checked blood pressure and listened to steves chest,like krys said cos i can get him out of the turn it dont sound like epilepsy,he said its hormonal,sounds not right to me,would you insist on ecg?i always walk out of doctors feeling like i should have said more

[hev]

can anyone explain what an ecg and eeg are,ive realised i havent a clue what they test for and how the test is done,thanks

[Mother in Need]

Thanks Hev.

I think (someone please correct me if not fully correct and/or add to it):

an ECG is an electro cardio gram which really looks at one's heartbeat. They attach small electrodes to the chest and other areas, to measure heart beat. it is totally painless and only takes minutes.

An EEG is an electro encephalo gram which looks at one's brainwave pattern. Again they attach small electrodes, on the head I believe/assume, and is painless also.

[lorryw]

I used to work with a little girl who experienced petite mal, she would suddenly shut down and was unable to remember what had happened. It was described to me a form of epilepsy. Sorry, its such a long time ago I really cant remember a great deal about it but it may be worth a google.

take care

Lorainex

[Paula]

<'> <'>

 

Hev i hope youre son is ok

[bid]

If you are still worried Hev, go back and ask the GP to refer Steve to a neurologist.

 

I would be unhappy to have these episodes just put down to 'hormones'

 

My son had quite dramatic fitting episodes when he was younger and had exhaustive tests including a waking EEG, a sleeping EEG and an MRI scan. There was a tiny bit of unusual electrical activity, but ultimately all the tests together showed that he didn't have epilepsy. Subsequently it became clear that these seizures were a severe form of panic attack

 

Just a thought about being able to 'get him back' meaning that it's not epilepsy. I work with children and young adults with severe epilepsy and one of the techniques we use when supporting them during all the different types of seizures is to talk to them, encouraging them to 'talk away' their seizure. This works because if you can get the person to focus on something, it breaks up the pattern of epileptic activity in the brain and can shorten/bring them out of the seizure.

 

I'm not trying to scare you Hev, just to say it really is best to get specialist advice on this one. It probably is due to something like stress, but this needs to be confirmed by proper tests.

 

Take care and try not to worry, hun <'>

 

Bid

[Kathryn]

I think an EEG would be a good idea, hev even if just to rule out epilepsy. L had this, and it is very simple and painless procedure. She also had an MRI scan which is a little more uncomfortable, because it involves lying still for a long time inside a large tube, but it's also painless. She enjoyed both tests actually, as she was fascinated by the whole process.

 

Both tests helped to set our mind at rest - (they were't investigating epilepsy but whether there was a neourological cause for her coordination difficulties).

 

K x

[Suze]

<'> hi hev, sorry I don,t know how to do a link , but if you use the search engine and put in absences and epilepsy you should find the thread I started, it was back in April.Try not to worry, sensory overload can result in absences.My sons current specialist teacher has worked for the last 15yrs with autistic kids and she told me alot suffer from a switch out, generally it happpens during a noisy busy time, when they have been concentrating, reading , playing computer games etc.My son gets them when working hard at school, when watching the telly, or after a meltdown.Big hugs suzex.

[smiley]

http://www.asd-forum.org.uk/forum/index.ph...amp;hl=shutdown

[hev]

oh thanks smiley you are a love <'> <'>

 

im not happy at all with just leaving it,got a gut feeling its more than what the doc said,they are happening so frequently,gonna ring up in morning to be referred for ecg.

 

have read the thread which suze started,this petit mal type,is there medication for it?

[bid]

There is loads and loads of different medication used to treat epliepsy.

 

The EEG would identify what kind of epileptic activity is going on (if it is, of course) and then this determines what kind of meds to prescribe.

 

The majority of people with epilepsy have their seizures very well controlled by medication these days, often not having any more seizures at all.

 

Good luck, Hev, and try not to worry too much <'>

Edited February 15, 2007 by bid

[krystaltps]

Hi Hev, sorry you haven't really had much response from the GP. I know how it feels to have that gut feeling, and I personally would go with it - simply because mine has always proved to be right.

I think you should insist on an EEG, even if only to put your mind at rest. Go back to your GP and tell him that there is a higher incidence of E in ASD children, and you need to have this ruled out. Tell him you are concerned that it may be a partial, or atypical, seizure (hence your boy is retaining consciousness). That way, he/she'll know you've been doing your research (believe me, 20 minutes internet research - and you will know MORE about E than your GP ).

An EEG is the quickest, simplest (and, dare I say, cheapest) way to dx (or rule out) E. It cannot tell you what type of E, that is derived from the symptoms, but it can tell if there is any abnormal activity going on. It's non-invasive, and painless (but the glue they use to stick the electrodes on is very icky - it's best to have a new haircut for the occasion). It takes only about 20-30 minutes. You get the results back in about 2-3 weeks.

Absences can be treated with meds, but most paeds and neuros are reluctant to prescribe daily meds unless the child's health is endangered by not doing so. E meds are pretty potent, and it can take a long time to get the right dosage.

Try my link to the NSE website and forum, do a bit of research, then contact your GP again. You need to resolve this for your peace of mind. <'> <'> <'> to you, thinking of you and Steven. If you want to know more about E, meds, or EEGs, PM me anytime, I can give you more links to good sites as well).

Keep me posted......

[aro]

Hi, my dd has epilepsy, she has complex partial seizures and absences, so far (fingers crossed) not convulsive seizures. I just wanted to point out that it is possible to have altered consciousness reather than a complete loss of consciousness. Also there are non epileptic seizures. Keep a dairy of each episode, what happened before, during and after and ask the GP to refer you to a paed, if you are seeing a paed for ASD phone and speak to them. ASD and Epilepsy together are pretty common. An EEG may help (though if no seizure is happening at that moment a standard 20 min EEG is lees likely to show activity than a 24he EEG)

Hope you find some answers.

 

A x

[Mother in Need]

Am interested in this thread as my youngest (NT) has funny turns as well (interesting that we too name them as such), he has those little absences but ALSO gets very dizzy often, and sometimes his heart goes mad and he almost collapses, is confused, extremely tired, headache, and takes longer and longer to recover (1 1/2 days the last time).

 

From what I have read so far, this means that my youngest could be epileptic as well then, there were some more symptoms listed that he also has. Though he is not on the spectrum (as far as I know), he is emotionally immature, lacks social skills, has some mild speech problems, sticks to rules like glue etc, so I do feel he has a few tendencies.

 

Has a poll been done on how many ASD kids here have epilepsy as well?

[Mother in Need]

Has a poll been done on how many ASD kids here have epilepsy as well?

[krystaltps]

I don't know if a poll has been done here, but I do know that there is a proven link between the two (ASD and epilepsy)

[millyz]

I read that it could be around 30% of children with Autism are epileptic!? But it's more likely to be a sensory shut down.

 

Hev

Do get it checked out. EEG's are non-invasive but don't always detect any abnormal activity. Keep a diary though to show the doctor.

My daughter has epilepsy, but the underlying cause for her is brain damage (hemiplegia) so we were sort of expecting it. This includes absences among other things and therefore she is medicated. I don't know that medication is always necessary for absences.

Talk to the doctor, see if you get refferred for further tests - and take it from there.

 

All the best and let us know how you get on, we'll be here to offer more advice and support

x

[smiley]

How's he doing now Hev??

 

My son used to have up to 30 a day - after lots of testing, nothing came to light.

These links explain sensory shut down and for me, seem to be the reason behind my sons problem...

 

http://www.shutdownsandstressinautism.com/StressinAutism.pdf

 

http://www.everything2.com/index.pl?node_id=1707940

[Mother in Need]

Thanks for those links Smiley. It is clear to me that what my youngest is experiencing is usually not related to that kind of shutdowns, but is more likely epilepsy. Though, saying that, he may sometimes shutdown in an auditory sense, and I will observe that much more closely now.

He is being officially tested for dyslexia tomorrow (finally, as he definitely is), has been referred to speech and language and has a EEG next week. I don't know if any of those can be linked or are part of a greater pattern?

If an EEG doesn't show anything (I mean, it is only a very short moment's peep into the brain), or there other tests that can be done to check for epilepsy?

[hev]

took him to doctors again today,he said it is severe panic attacks,what do you think?it does seem to be when hes stressed,doc gave him some vitamins,cant see how they can help can you?

[smiley]

Hi hun <'>

 

Vits can help - i can't remember which ones (magnesium??? not sure), but some do have an effect on certain things.... (as a complete btw - i've just read the book that goes with the series about food 'The Truth about Food' - great and very interesting read...anyway... ) Has GP taken bloods yet? I really don't know whats causing it hun - but if i'm honest, most GP's have to go through a few things before anymore is done - kind of cross the i's and dot the t's before any referrals are made IYSWIM. Give the vits a while (i'd be going for a week), and if he's still having the 'episodes' i'd go back to GP.. And see what he tries next.. .

 

<'>

[Noetic]

Absence seizures don't usually last very long so the fact that you appear able to 'bring him round' doesn't mean it's not a seizure.

 

Absence seizures are generalised seizures, affecting both sides of the brain at once. However, they do not affect the entire brain. This type of seizure usually affects children, most commonly beginning between the ages of six and 12. It is very rare in adults.

 

During an absence seizure the child stops what they are doing, loses awareness of their surroundings and stares. It can appear to onlookers that they are daydreaming or switching off. However, the child cannot be alerted or woken up, because they are momentarily unconscious.

 

Around half of children who have absences may also display other symptoms during the seizure, such as smacking their lips, chewing, swallowing repeatedly or fiddling with their clothes. Their eyelids may also flicker slightly.

 

When an absence is over, the child is unlikely to be aware of what has happened, but may have the feeling that they have ?missed' something. Most children do not feel tired or ill after this type of seizure.

 

Absence seizures generally only last for a few seconds. They can happen several times a day. Some children may have hundreds of them during a day, although this is rare. However, if the seizures are very brief they can be difficult to spot.

 

The old name for absence seizures is petit mal, which roughly translated means small illness. This name makes them sound fairly harmless and, for many, they are little more than an occasional nuisance. However, when absences occur frequently they can make life very confusing.

 

When absences occur, the child misses out on tiny snippets of information. This can affect their ability to learn and also to understand instructions. For example, they might hear the first part of a sentence but not the end, so they hear the instruction to go out and play but not the instruction to be back in ten minutes. When they do not return as requested, this can be easily misinterpreted as misbehaviour.

 

http://www.epilepsy.org.uk/info/absence.html

[hev]

thanks noetic for the link