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Could this have been a seizure? And other epilepsy questions(52 Posts)
DD had an abnormal eeg result suggesting benign rolandic epilepsy. She has had a few odd turns including one where she dropped to the floor suddenly.
Anyway the neurologist can't see us till august and wants an MRI which I am told is not always the case with benign rolandic epilepsy so I am worried they think something else is going on (what though?). She has specific language impairment with associated learning difficulties so I guess its because of that possibly.
Anyway so now I am on alert all the time for anything that looks seizure like especially at night as the majorityof strange things happening have been at night. So two nights ago she fell out of bed and I ran up to see what was happening (she has spates of falling out of bed and then I often find her half way across the floor or she sleepwalks. This time she had fallen in a weird position and her eyes were half open which again is fairly usual for her. Her left arm was tensing/jerking a bit and she was opeing and shutting her mouth.
Last night she was up late and cried about going to bed. It was a forced cry, really deep breathes to force herself iyswim. Then suddenly she started making burping/choking noises. I ran upstairs and her arms were tensing and going up and down she had thrown er head back and seemed to be laughing and crying at the same time. The laughter was seriously weird not her usual laugh completely manic and she would hold her breath in between. She calmed sdown in response to me hugging her which makes me think maybe she was panicking rather than fitting? Laughing though was odd.
I would call your gp asap. it does sound like it could be seizures and these can be dangerous - hurting yourself when falling or even choking. sorry to worry you but you need to get some medical advice and start some treatment more quickly.
Really hoping there is another explanation
HI, we've spoken before about this. my son has myoclonic jerks and a bit of dystonia. it looks a lot like (mild) epilepsy and we have videos which the first paed thought was epilepsy. It is not epilepsy technically speaking, and he is not on medication. When he was really having a lot of these episodes, they would often be when he was tired or dropping off to sleep. Weird you should mention the manic laughing thing because DS did this and it was the one thing that disturbed me more than anything else. he would laugh and grimace. I told the doctors this but they never really explained why this would happen. one thing that they thought was significant was that it was possible to 'snap' him out of these apparant seizures by calling his name, which was one of the things that ruled out epilepsy. we have not been offered an MRI.
I think mood changes and/or 'auras' can be a common part of epilepsy or abnormal brain activity which is what I assume the laughing is all about.
it is so worrying isn't it? did you manage to get any video, we got loads and it helped the doctors a lot. descriptions of fits don't really capture all the different types there are. I watched a lot on youtube but never saw anything that exactly fitted what DS has (wouldn't recommend watching unless you are feeling strong!)
don't know anything about epilepsy but what you describe sounds worrying. I would not wait for the August appointment with the neurologist and rather make an appointment with the GP asap.
Thanks all. I wasn't sure about GP as thought they may just say well we know she probably has epilepsy from the eeg? So hard though, august is forever away and the ( requested as urgent) mri not till october. I have already phoned to say I can't wait till oct and they said that really is the soonest and the neurologist will discuss it all in august.
Pedalpamts hi again yes its awful. I have seen dd do the laugh twice before once when her steroid dose was dropped too suddenly and once when she became really upset about her dad going home. Its like it was a reaction to the hyperventilating with the crying. She tried to make herself do it again though! It really was disturbing and reminded me of scenes from horror films with exorcism in-seriously it was that manic. I will try and film her. I am writing a log of odd events too. I must cond=fess I am typing this from her bedroom where I am half watching her waiting for strange events-DP says I will go mad at this rate and he's got a point but I just want to know now.
DD has uncontrolled seizures. She has had a few abnormal moments that i often question, "could that have been a seizure"? All you can do is write them down, or film but I was told by the hospital that any activity other than seizures DD has needs to be reported to her Dr asap or go to A+E, so I would suggest a call to the consultant or epilepsy nurse if you have one? x
The epilepsy helpline said they would see if we had a nurse in the area. But so far we don't as not seent he neurologist yet. In fact we don't have a diagnosis as such but I think now its fairly unlikely it won't be epliepsy of some kind.
So hard to know isn't it? I work with children and have never seen anything like the laughing thing. But then it could have been that she hyperventilated. Its always when she's tired that these things happen and so I guess already I am seeing a pattern.
Iu wish the neurologist would just speak to me on the phone and tell me what they are looking for with the MRI.
used2b I work with children with special needs. Many of our pupils have epilepsy and its a difficult thing to diagnose and there are so many types.
I have witnessed seizures similar to what you descibe, manic laughing, facial 'tics', chewing , arms being thrown above head etc. Also pupils with dystonia and myoclonic jerks and the difference is very subtle at times.
I second filming these episodes or calling an ambulance if your worried.
thanks youarekidding. Interesting that you have seen the laughing ones too like pedalpants and I have seen. I am noticing so many little things about dd now its hard to know whats real and whats just me over thinking things. I will keep my camera upstairs at night now in case anything happens.
have just noticed pedalpants you say your DS was reachable during these episodes too. DD has had many times where I have been unable to wake her but that is the thing that has been worrying about those times and this laughing one was different. Very odd and very scary, it has made me determined that she will not be up beyond her usual 7pm ever now and I am going to try and keep an eye on how many exciting things happen in a day (yesterday was a busy day with two family party type events.)
We have 3 pupils who's seiures are characterized by manic laughing but often they are over quite quickly. And sometimes obviously they are just laughing. The indication of seizure is the lack of response or pupils dilating or becomming pin point.
It may be worthwhile seeing if theres any changes in her pupils during and after these episodes.
Sorry if my posts are sounding blunt - thats not my intention - this must be terrifying for you but just want to give you my experiences so you have information.
Hi used2be. I agree with all the comments above, and I just wanted to share my dd1's experience with benign rolandic epilepsy. She was diagnosed based on an eeg when she was 10 - she had been away on a school trip - without us - and had a massive seizure in the car in front of her schoolfriends. We live in the US and this happened in Nebraska...we live in Texas! Anyway, back home she had a CT scan - to check on any trauma - nothing - then an EEG which can detect recent previous seizure activity - this showed up the seizures she had been having. After seeing the neurologist he arranged an MRI which was to check for any structural abnormality which could be causing the seizures - they actually only found a benign cyst, which was so small, and in a different area they decided to leave it alone. A later mri showed no change in the cyst a couple of years later. All of her seizures were triggered by one of the typical triggers - being overtired, overheating (wearing a thick fleece in a hot car), or coming down with a fever. She only had a few before they were controlled with medication - after a couple of years however, she had breakthrough seizures which were different again, but resolved with a change to her meds.(One big one when her arm froze, then as she asked for help her mouth froze and then she collapsed into a grand mal). Now she has been seizure free for 3 years, off her meds and planning on learning to drive.
I would suggest keeping a diary of all the "funny episodes", which may help you to see if there is a pattern of triggers (there may not be), but will all help with your discussion with the neurologist. I would also be pressing for a supply of emergency medication - we still have rectal diazapam at home which should be given for any seizures longer than 5 minutes, and you should also call an ambulance with anything this long.
Sorry this is so long! my dd3 has cerebral palsy and she used to have myoclonic jerks and twitching, but as we could always "reach" her the doctor was sure she did not have epilepsy. For staring or other episodes, we were advised to wave at her or call her name and she was always "there". Sometimes when she is overtired, she gets very twitchy and scared-looking at night, and needs to be hugged to sleep, but I think that is more linked to her cp/tiredness/not being able to express herself.
Good luck with everything - and August will be here before you know it.
Hi haven't read all posts so apologies if this has been said but laughing and crying during a seizure a called Gelastic Seizures I used to work with a boy that had these very unusual but can be quite serious I would get it checked
sorry you've got to wait so long for the appointment. it is very worrying. i found the epilepsy nurse quite helpful and was given her direct line, don't know if you have anything similar.
i found that DS being tired was a definite trigger, as was lots of overexcitment (i'm very worried about our summer holidays making him ill for example). DS was prescribed a mild sleeping medicine (Ali something or other) which seemed to reduce the number of funny spells hugely. he doesn't take it anymore, but I have it in the house and on repeat prescription which makes me feel more secure.
one thing is that I think the 'seizures' actually release a bit of tension in DS and help him funciton reasonable well in the rest of his life. i think they may also come in clusters when he is growing. don't know if anyone else has found this?
What's her diet like? I've worked quite a lot on this.
Tiredness seems to be a common trigger then, thank you everyone there is so much info to be found on here!
youarekidding no really you aren't being blunt and where to find out what we are facing so really am ok with any info its helpful.
Hopefully DD's endocrine dr is calling today about medication (she is steriod dependant and since her dose was upped a while back she hasn't slept properly and has had really awful behaviour-hitting etc.) so I will mention the laughingand ask if she will tell the neurologist.
wentshopping that is really interesting and i am releived to hear your DD had an MRI too and that things were ok. Is her development ok? Dd is severely affected with the language impairment but is progressing slowly so I am hoping that that means nothing really sinister or degenerative is happening but so unsure, I feel that we have had so much bad luck with her health that anything could be about to happen.
pedalpants I didn't know we could speak with the epilepsy nurse without a diagnosis of epilepsy i will definately ask about that as it would be really helpful just in these situations where i don't know if something is worrying or not.
hi used2bthin, I agree with most of the other posters and wanted to say that even if they are not epileptic seizures it is good to document them (keep a diary and hopefully some videos) and talk to someone about them before Aug.
Also it's probably good that you've been referred for an MRI (despite the practicalities of having to deal with it) as they might pick up something that wouldn't be seen otherwise. I can't say exactly what your dd's neuro is looking for though, do you have an e-mail address if not a phone number?
Unfortunately even when ds2 was clearly having tonic-clonic seizures and we took him to A&E the medics and other staff could be quite dismissive. I think epilepsy is so 'common' and they assume as soon as you are under the care of a doctor it's going to be sorted out, without thinking of how long it can take to get the right medication, and the right dosage (if you ever manage to get that) and the day-to-day implications of living with epilepsy.
Have you tried going on the Epilepsy Society forum, or calling their helpline? I found the forum quite helpful when we were going through everything with ds2.
Oh and ds2's first witnessed seizure was in the evening and he was clearly very tired. Before that, he used to fall out of bed quite a bit but when we went up to check on him he was still fast asleep, just on the floor. I did wonder whether he actually had been having seizures for a while and we were missing them. Of course after that we watched him like a hawk every night, and most of his seizures seemed to come at night, so I can quite understand why you have been doing the same thing with your dd.
You need to log the seizures, because they will most likely ask you to do it and come back otherwise. Date, time, duration [over 5 mins is a medical emergency call an ambulance], what happened just before [ie going to sleep had a temp etc], What was the first thing to happen [ie looked up and to left or right arm lifted etc]....They seem to be being remarkably laid back, though they may just have to see you at 3 month intervals or what ever to diagnose.
My daughter giggled in seizures a couple of times and often smacks her lips. We get most seizures when she is dropping off to sleep. I never let her get hot she is always under dressed. Being warm can raise your seizure threshold and so make it easier to have a seizure.
Dr's are most interested in what happens at the beginning of a seizure because it can indicate where to start looking for anomalies in the brain. My daughter always wets herself when she has a seizure and I think that is quite common. They are also interested in triggers so what youare doing before is important. Long seizures are life threatening and I would learn basic resuscitation and have the sheets stuck up in the house.....better to be over cautious.
Totally agree with the 5 minutes then ambulance.
At school we wait 4 minutes then call for help (have an alarm) so we have emergency meds by 5 minutes. I would say to call an ambulance after 4 minutes to allow for the 30 seconds it takes to you get to her when you hear her and the 30 seconds it takes to dial and be connected. State clearly shes having what you suspect is a seizure and make it clear you don't have emergency meds and she isn't on any meds. If you made it clear this has happened before but this is the longest - hence ambulance- you may have luck that they'll investigate in hospital.
I've heard seizures on going to sleep and waking are very common - I know a lot of our pupils have this as well as virus', heat, sudden change in temperature, emotions and over excitement. Don't worry its not usually all the triggers but it shows anything can be a trigger and agree with posters above who say record what she's doing when it starts.
just wanted to add a few things from dd's experience... we were looking for triggers when we first started seeing the seizures, and the only common thing (for the first 3) was that she had been squashed in the back of a rental car...so of course, being a bit precious about it, we asked the neurologist if this (the smell of a rental car) could be a trigger . Not one that he had heard of...
For the mri, they needed to put an iv line in her hand for the dye which shows contrast in the brain, and the same line could also be used for sedative if she had felt that she couldn't lie still for that length of time, but she chose not to be sedated - I thought I would mention that in case you were worried about how they might sedate your dd. You mention the endocrinologist... could the increase in her other meds be causing the seiuzure-type behaviour? The reason I am asking is that when dd was having breakthrough seizures on her first medication, they upped her dose, and she started getting clonic shaking, blurred vision an hour or so after taking each dose. This disappeared as soon as the dose was reduced.
And no, the b, rolandic epilepsy had no effect on her development at all. The only effect she noticed was that I stopped her gong on sleepovers (didn't want to burden other mum with looking out for seizures) and on dr's advice no baths on her own - showers ok though - just to be careful if she ever fell over near water...but I think your dd is a lot younger than mine was, so you wouldn't be letting her take a bath on her own yet.
Hello all, will reply properly this eve as have only had time to skim read and there is so much useful info on here.
I spoke to our endocrine dr yesterday and she has said we can reduce the night dose a bit to see if it helps her sleeping and behaviour-hadnt thought abot it affecting her in terms of seizures. I also asked about the two events I put in the OP and she said to do exactly what you all advised on here, keep a log and film if I can! So last night I got dd on film sleeping with her eyes open just out of interest and also filmed her shortly after she fell out of bed.
For the mri they didnt mention dye but did say she will have a general de to her age. They usually put her out with gas then get a line in as her veins are so tricky due to so many blood tests as a baby. Much as I am dreading all this I would love to get it over with. The dr did say if we see lots of odd things she wants to know so she can tell the neurologist.
Ds also sleeps with his eyes slightly open. not always. i've always felt it is significant in some way.
sometimes I just feel I'm making lists of really odd things!
Me too pedalpants and would have thought more of it before except her dad does the same thing! And he almost always starts jerking around (literally rather than messing about!) just after falling asleep which makes me wonder about him as his mother was epileptic! So easy to think into everything but then that doesn't mean its not relevant- I am also making lists of all sorts of things!
Meant to say, her diet is generally good but the day of the laughing thing she'd had lots of sugary food and I have read that seizures sometimes can be helped a bit by reducing sugar-can't remember where I read it though.
Highfibrediet I rang epilepsy action's helpline and they were great although it was the lady I spoke to there who said it was unusual to need an MRI as well as eeg for benign rolandic epilepsy so they may be checking for something causing the epilepsy so it did scare me a bit but then I did want to know. She sent me some info and I will definately be speaking to them again once I know more as the advice was really staright forward and helpful.
Meant to ask about the call an ambulance if more than five mins thing- is that with a full blown seizure (well I know they are all seizures but I meant the type I had imagined was what epilepsy would look like)as in fall to the floor and shaking etc (is it call a tonic something?). Am only asking because dd has never had one like that that I have seen so I would definately call one if she did but for the more ambiguous ones like where her arm is twicthcing or the laughing would you still time it?
Hi there really does sound like a seizure.My daughter laughs sometimes but its not the kind of laugh where we laugh back its a weird spooky hysterical laugh.My dd is having all sorts of differant seizures at the moment.S he has ones where she screams for ages afther the seizure,She has bad absence type ones where she is unresponsive and goes blue.There are soooo many i would really get it checed out as they can do other testes such as video telemerty.
Hi Growleybear. That sounds so stressful for you does she have them often? I had no idea that laughing was so common wow, a girl I work with who has a dd with epilepsy said she does the same. Yes the laugh was as you describe, hollow and just not funny, very scary. It wasn't her laugh at all if I'd heard it from outside the rom I would have thought it was a different child.
The lady on the epilepsy helpline said that some children can try and trigger a seizure if they crave the sensation and dd is quite sensory seeking so its a possibility I am willing to accept tbh. I cannot wait for this appointment.
Yes I would call for anything over 5 minutes - regardless of the seizure 'type'. Seizures can affect oxygen levels. I would at least until you know what your dealing with. Someone with more 'personal' experience may not advise the same though.
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