Could this have been a seizure? And other epilepsy questions

[used2bthin]

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.

[youarekidding]

How old is your DD?

[used2bthin]

She is nearly five

[youarekidding]

OK, sounded a strange question without explanation, it's just I've heard (not sure how true it is btw) that children who could be predisposed to epilepsy due to some conditions (CP/autism etc) tend to show signs by the time they're 7yo, and often around this time. Guess its asthma is meant to have a 7yr cycle?

Can I ask what genetic condition your DD has if you know? (and only if you don't mind saying)

BTW last day of term (inset) we have the local epilepsy nurse coming in to do some training with us. I'll see if anything you've said above is mentioned/discussed. I might be able to get some information/advice for you?

[youarekidding]

it's like asthma.....

[used2bthin]

Thanks that would be great! Her condition is quite rare so don't want to put it on here but it means she is steroid dependant as she can't make certain essential hormones. The learning difficulties and probably the seizures are unrelated though.

Just filmed her asleep and lip smacking- she had fallen out of bed and I lifted her back in and she sort of woke for a second then started lip smacking. The other night I filmed her when she had just fallen out of bed and watching it back it looks so odd, she seesm jerky and her head goes back a couple of times, she is going in and out of consciousness but of course she was half asleep so hard to know for sure.

[youarekidding]

Ah bless her and poor you - its very stressful I imagine.

You've probably thought of this but a bed guard (padded!) and maybe something on the floor would be an interim measure I should think.

I'll definately see if anything the nurse says rings true to what your saying and report back.

Hope you have a restful night.

[used2bthin]

Thank you thats really kind and yes please that would be great. Her new bed is very low to the floor luckily as she seems to move around so much at night that she used to manage to fall out of her toddler bed even though it had a guard half way across!

Life is stressful right now but we seem to be on the verge of answers for her s and l issues hopefully. Thanks again.

[HighFibreDiet]

We ended up just putting a mattress on the floor for ds2. Oh and he did lots of lip smacking too, which ended when he was on meds. Plus just to give you a happy story, he has been weaned off meds for a while (completely med free since last Oct I think) and seizure free for over 3 years so it's not necessarily something that will carry on for ever.

Our kids can be so complex it's hard to disentangle everything and sometimes easier to attribute everything to the same cause iykwim. So don't beat yourself up for not thinking about neuro stuff earlier. I'm sure you have enough on your plate in any case.

In retrospect ds2 was probably having auras or sub-clinical seizures well before we actually witnessed a full-blown tonic-clonic seizure - like about 3 months beforehand. He was in nursery school and I specifically remember mentioning to one of the other parents that I didn't know what was going on with him because he just wasn't behaving like himself any more. Isn't hindsight a wonderful thing? .

[used2bthin]

Thanks HighFibreDiet and yes you are right about hindsight, I just feel a bit neglegtful about some stuff as I think if she didn't have the other condition complicating things I would have been more worried. But then that goes for the doctors I told too so I suppose it just IS difficult to tell the difference sometimes especially since if she's having seizures most of them have been subtle things.

One thing I keep thinking of is DP saying he finds it hard to sleep in the same room as DD because of the noise she makes with her mouth when asleep! Sounds like we all go through similar thoughts though. I remember also DD's eyes rolling back when she was ill and again I rang the doctor but assumed it was to do with her condition so didn't push it.

Last night she was up late so I was worried somehting would happen and she did get upset in the car and when we got home had wet herself which is very unusual in the day. It seems a bit of a coincidence that all this stuff is now happening now I know she has probable epilepsy though!

Really good news that your DS is now off medication, one of the things I am worried about is side effects if they put her on meds as I know from the steroids how hard it can be to get the right dose. DD had been on a new higher dose for six weeks and it was so awful, v poor sleeping and behaviour dreadful. I rang the consultant this week in desperation, she suggested I lower it a bit and the last three days and nights have been noticeabky better I am enjoying time with her again, scary that if I didn't ring up we'd have carried on like that!

[growlybear]

Hi used2bthin have you seen the dream tubes they do at fledglings.We have just got some for our hols i just wondered if they may stop dd from falling out of bed.My dd does the lip smaking as well she also does something that can only be discribed as looking like a fish ie opening and closing her mouth.I am also going through a confusing period re-epilepsy as dd also hyperventilation attacks and then slows her breathing down and turns blue so.Its hard to tell whats a seizure and whats not or is she just dosing off or is she just having time out.So i agree with you about the confusing aspect of it all.x

[lovethecake]

HI There, my dd also has many different seizures,similar to what growlybear describes,always keep a record of what you observe ,it does help if you can get a video for the professionls,hoe ever much detail we give they always suggest taking a video. Message for growlybear please can you message me,still trying desperately to get some help on the incontinence products.

[used2bthin]

hi growleybear I haven't heard of the dream tubes I will have a look, thanks. DD also does the fish thing and a sort of suckling noise as if she is a baby feeding. In her sleep I mean. Also she often does a weird frog type noise in her mouth in the day although it may be just a habit, hard to know.

Hi lovethecake I am doing a bit of videoing it seems to look weirder watching it on film than normally if that makes sense. Got DD sleeping with her eyes open in the car today so will take it all to the appointment with me.

[growlybear]

Hi used2bthin my dd has even confused the specialist now just goes to show

how confusing epilepsy is.

lovethecake have messaged you.

[slowburner]

My DD is not epileptic but suffers from severe febrile convulsions, after the second set (with 2 back to back) we were given bucchal midalzalam at home which we had to use for the fist time last night when she fitted - overnight stay in hospital - but our drill is - Wait 4 min from sign of fit, absence/loss of consciousness/abnormal movement then call for help, at 5 min we give midazalam, last night it brought her round in 90seconds.

Re calling an ambulance we've been reassured that the people who need to usually don't as they worry they overreact! Fits lasting more than 5 min can be bad, our daughters second fit lasted over an hour and she couldn't be stablised, it was completely terrrifying. Our DD also jerks (hypnic/myoclonic jerks) and we have to log and video them, always as she is dropping off to sleep, more when she is ill, tired or working on a new development thing like crawling (pedalpants - you are the first I've heard note something similar!).

[pedalpants]

Growly bear. my son also hyperventilates /has breath holding attacks. not often but they are terrifying - his limbs go into spasm briefly during them. have been assured that this is 'normal' toddler tantruming but it does all seem to stack up as something odd going on to me.

slow burner. weird you should say that the myoclonic jerks happen prior to a development thing. DS had loads before he started talking and he now talks pretty well. he is quite jerky at the moment so I await with baited breath as to what will happen next!

[used2bthin]

All these seizres you have been dealing with sound very scary. Hi slowburner you too, sounds really upsetting.

Can I ask about the jerkiness? (not that that is a word I know!) My friend who moved away around 7 months ago said to me on the phone that my DD doesn't look like she has SN and I said well she sort of does now and was trying to explain that recently she looks a bit jerky sometimes and off focus almost, so your post just rang a bell. DD also stumbles about a bit but that just may be due to how delayed some aspects of her development is.

Something I haven't said on here is DD now has a microcephaly diagnosis which means small head so that is another reason thay want an MRI in case her brain is too small or not developed in some areas.

[slowburner]

We too have a micro dx - in our case it is known as secondary microcephaly, it occurred because of the initial brain trauma (HIE) as opposed to a link to a genetic or growth condition.

'our' jerkyness is fairly random, can affect all four limbs or one at a time, usually when sleeping or dozing, in the early days when she was feediing, but not since. Our neuro is reassuring and says that although not every child does them they are not at this stage anything to worry about.

[growlybear]

Hi pedalpants yeh i know what you mean about them looking terrifying.With my dd it is part of the condition and they say she will always come out of it,But its still worrying isn't it.

[used2bthin]

that is interesting, I read that children with micrcephaly have a higher chance of seizures. I didn't know that there was such a thing as microcephaly occuring after trauma 9am guessing head injury type trauma). DD had a normal size head when she was born, it was only discovered she had micro when she was three. Also her development was normal until around 13/14 months when she stopped being able to talk.

[growlybear]

Hi use2bthin my dd's head was ok at birth and then slowed down and then she regressed at just over a year old.Her seizures started when she was 17 months old.Did your dd lose any other skills.My dd lost the ability to do anything including swallowing and sitting up.

[used2bthin]

growlybear that sounds like it must have been terrifying. She still learned to walk etc after that so I don't think so but oddly her ability to draw still comes and goes for example she can do really good faces for a week then back to really young drawing for her age. At the time when her speech regressed itwas just after a few illnesses which with her genetic condition complicating them were fairly serious for her at the time (although no more than a few days in hospital so fairly quickly sorted. But also she had an investigation under anaesthetic around that time that took longer than it should have done, I have always felt a bit uneasy about the coincidence tbh. We also moved house so initially it seemed she was delayed due to lots of illness and the move but obviously now she is nearly five with a severe SLI etc etc we know it was more than a few delays.

[growlybear]

We always find with dd that any little thing causes her huge problems and every time she is ill or something differant happens she changes and it can take ages before she is back to her old self.Even today she has been to see her new school and she was absolutely exhausted and has hyperventilated all evening and needed just to sit and watch a dvd and chill all evening.

[used2bthin]

Ah bless her growly bear I can't remember, how old is she again? My dd is the same and had a really bust weekend and late night last night and literally looked ill and haggard today. Her genetic condition means she can't deal with illness or stress herself so I guess she's a bit low on her steroid levels today.

God its complicated all of this isn't it? I think I am better off that DD is my first and diagnosed so young (newborn)with the genetic stuff because it means I am used to motherhood being about all this. It must be a real shock to have a more typical experience of motherhood then find out life will get complicated.

[growlybear]

Hi used2bthin my dd is 12.yep my dd same as yours re tiredness that sets her seizures off big time.I have a 15 year old and yeh tis a bit of a shock when you think you will just do it all the same the second time around-and then mother nature has different ideas.Also my dd wasn't diagnosed until she was two so double shock really but i wouldn't have it any other way now.

[used2bthin]

Yes I can imagine it would be a shock. I have had gradual extras with dd the most recent being the epilepsy (or possible epilepsy). She seems not to have behaved so oddly at night this week but we will see how things go until the appointment.