Moose here, Not SEN children but could someone please advise me - epilepsy

[moosemama]

Well my weekend away was disastrous in many ways, but the most significant one was spending the whole of today in the Acute Medical Ward of the hospital after having what is believed to be two fits last night. (Meanwhile my poor old Mum was coping dd recovering from a vomiting bug and ds2 coming down with dd's bug really badly and even throwing up in his sleep over and over - so she had to sit up all night with the poor mite. )

As for the weekend away, I didn't even make it to the meal. 6.30 pm, ordered my meal, felt a bit odd, realised it was neurological and dh took me back to our room - which was in the building next door. Went to bed and after a while felt well enough to think I was just going to sleep and would probably feel better later and perhaps join the guys for a drink before the end of the night. So sent dh back to join our friends.

Woke up an hour later felt odd and disorientated. Went to the bathroom, sat on the loo, felt odd and then woke up under the toilet, head and feet the wrong way to have just fallen off/fainted. When I came round I was aware of a sort of growling noise, and then a pain in my head. I realised when I came out of it that the pain was my head repeatedly bashing the underside of the wall hung toilet bowl.

Lay there for a few minutes until I felt I could move, got up wobbly and sat on the loo, then wham - woke up under the sink on the other side of the room - it was a really big bathroom, so again too far away to have just fallen.

There was no warning, although I did feel really strange. No dizziness and I didn't feel link I was fainting - which has happened to me a lot over the years and I would recognise that "uh-oh, here I go, slidey feeling". It was literally just, one minute I was sitting on the loo, the next I was under it with a head covered in lumps - the worst one being my left eye socket. Fortunately it didn't develop into a full on black-eye, just a shadowy bruise that can be mistaken for a shadow - can't imagine having to walk into school tomorrow with a black-eye.

I also ache all over today and seem to have wrenched my shoulder - although I can't imagine how.

So there I was, locked into our suite on my own feeling very scared and shaky, with dh at a gig in a separate building. Managed to crawl back to the bedroom and grab my phone and by a miracle got pretty much the only decent mobile signal I had all day to send a text that read He L p.

Dh is now back in my good books after coming thundering through the pouring shropshire rain and up three flights of stairs to rescue me. He had been drinking so couldn't drive (not that we knew where the hospital was) and all I wanted to do was sleep and wouldn't let him call an ambulance, so he insisted on checking my pupil reflexes for concussion, before sitting with me until I fell asleep.

Sooo, my question is can you be aware you are having or rather coming out of a fit, or would you be completely oblivious to it? I have always thought you have absolutely no idea what's going on and because I was on my own, no-one else saw what happened.

The doctor I eventually saw at the hospital felt it was suspicious enough for them to want to keep me in and run some tests tomorrow, but I refused as ds1 was already in a state, having expected us back at 4 pm and Mum wanted him to sleep over there, which would have screwed the whole week up for him due to the routine change.

Most of the standard neuro proddy pokey tests they did today were normal, but I had a positive Babinski's reflex in my left foot (the one with Complex Regional Pain) and I have felt like I have a really bad hangover all day - which is rather unfair considering I didn't get a chance to drink. In the end they agreed to discharge with an urgent referral for outpatient EEG and yet another MRI, plus a letter informing my neurologist.

I really want to believe I just fainted, but know it didn't feel like that and I to be honest I get upset and frightened just thinking about how it felt at the time. My friends want to rebook in January for a 40th birthday, but I can't bear the thought of going back there.

I did lose a bit of weight on Lamotrigine. Sadly it has all found me again, and brought its friends, since I started back on Gabapentin...

fat heifer again now

And watch the nystagmus. When was your last eye test? Make sure you have really regular eye tests.

Sorry - just had a middle of the night giggle about me typing 'watch the nystagmus'.

Yes, because you can really 'watch' that yourself, what are you going to do, stand in a mirror watching yourself all day?!

(Had a nasty case of it with Topamax, and had visions of me trying to 'see' myself what everyone was saying was wrong with my eye, standing in front of the mirror for about two hours, trying to turn to my side to see it. I was like a dog trying to catch it's own fucking tail...)

I'll shut up and crowbar my foot out of my gob now, and stop seeing the funny side of what I must have looked like that day!

And I'll be more careful with my choice of words in future.

I mean, 'watch the nystagmus'?!

Get a dosset box. If you're anything like me, it will stop you from missing doses.

Oh FFS. Enormous update post seemingly lost in the ether. Balls.

Hi all,

Absolutely knackered today after travelling down south and back again for a funeral yesterday - but, I haven' had any nocturnal episodes for two nights now, so not all bad.

Have been keeping track and noticed that I have no problems with my left eyelid and am not exhausted and confused in the mornings where I didn't have an episode - so whatever is happening, is definitely at the root of my 'bad days' so to speak. I am still very tired today, but it's a physical body-tiredness that comes from doing more than I am up to at the moment, rather than the deep cognitive foggy-type exhaustion I get after I've had a nocturnal episode. There's a distinct difference to both the feeling and how well I can cope with the day depending on whether or not I've had an episode in the night.

Been talking it all through with dh and Mum and am starting to get my head around it a little. Thinking that seizures can originate from a genetic tendency, malformation, trauma or damage (eg lesions - in my case) and that both my standard long-term symptoms and my 'episode' symptoms are pretty much all sensory, I'm assuming it's all relating to one or more lesions in a specific area of my brain - from what I can make out the right parietal lobe, which deals with sensory information on the left side of your body.

Whether they are actual seizures or some sort of intensification of sensory symptoms I do not have a clue, I guess the neuros might be able to make that call, but that with a clean EEG they are unlike to call seizures just yet.

As for the CADASIL aspect, there is definitely a very strong correlation between the progression of that syndrome and my medical history, but it could just be coincidence - who knows. Whether the lesions were caused by CADASIL, complex migraine or some other unknown factor the end results could still be the same - ie the sensory symptoms and intensifications I've been experiencing.

... aaand that's as far as I have got.

In other news ds1's old bullies have resurfaced. Yet again, as soon as there is some disruption in these kids (they're brothers) lives they start using ds1 as an emotional punchbag. They have moved house - yet again - and this week he has been taunted and teased about having SNs, had his stuff thrown around the classroom - whilst being taunted, been intimidated in the playground after school (I witnessed this myself and intervened but the little so and so ran off) then yesterday was repeatedly humiliated in the toilets and eventually punched in the privates.

Sent a long note into school today and the deputy head just called to assure me they are being dealt with in accordance with the new anti-bullying policy and not just being made to say sorry then let off, as ds1 had thought. The Head has been involved today, but they aren't at liberty to tell me what action is being taken. Given that these are the brothers that picked him up, threw him on the floor, then held him down, threw dust in his face and stuffed it in his mouth, then took turns to hold him down and kick and punch him a couple of years ago and yet are still in the school, with one of them even in his class - I am not expecting much.

Oh - and dh just called to say the meeting to decide whether or not the LEA will agree to the funding band the indie school want for ds1 is not happening until next Wednesday, but there will be no-one there for us to speak to about the result until Friday! Friday will be a whole month past their deadline to name a school!

On a more positive note, ds2 is in the school production tonight, so am looking forward to that. He's been loving all the rehearsals and learning his lines etc and his teachers say he has been fantastic with it all. Only thing is, it's two hours long! A bit much for a school production. They had to cut it short when they did the dress rehearsal to the rest of the school because they ran out of time! Poor ds2 was already knackered this morning and is usually in bed for 7.30, but the play won't finish until 9.00 pm. I can see him having to have the day off tomorrow.

Really? I am actually feeling a bit better today, very very tired, but at least able to function, iykwim.

I keep going back to the thread about MNSN and how it works, but am finding it exhausting and upsetting to read so have had to duck out and not post on that one.

moosemama - well done for making a little headway with your own situation.

Your DS2's situation sounds unbearable. Be a tiger mummy!

We'll be thinking of you next week - let us know how you get on.

Please tell us about your DS in his production, those moments always make me cry a bit!

Thanks lougle.

I know I am going to cry, because the production is all about evacuees in WWII and my friend, who teaches at the school and has a ds in ds2's class, has already told me she keeps crying when she hears them rehearsing the songs. I am going to be a blubbering mess!

As for ds1, I wish I could just pull him out of school, but he won't have it. Can't wait for the Easter holidays to get a break from it all - if they LEA have sorted their backside out and actually named the school we want by then.

Moose how absolutely appalling for Ds1. I hope the school do act this time. I can't understand how that can be happening at a primary school on the school premises without staff being aware of it.

Exactly NoHaudin. Some of this has happened in the classroom and when I ask ds where the teacher was, he says she was on the other side of the classroom and didn't see.

They won't take any serious action. If they didn't when he was properly beaten up, they're not going to this time.

I have just discovered their new 'anti bullying' policy on the website - it talks about three categories of 'behaviour' and what the main sanctions are, then about escalating through the levels of reporting and consequence - which are detailed on the appendix. Guess what? No appendices on the website.

This is the policy that the school proudly announced had been written after consultation with a group of parents. Inexplicably however, they didn't think it appropriate to include parents of children who have experienced bullying at the school.

They have tried in the past to tell me that it's ds1's 'sensitivity' that's the issue, as a lot of it is typical behaviour and banter for children on his age - but I don't accept that. If I found out any of my dcs had behaved like those little hooligans I would come down on them like a tonne of bricks. It's not normal or appropriate behaviour - it's totally unacceptable and ds is victim, not part of the problem.

No school's policy or attitude or both is not working,
When Ds had some very minor bullying (it was almost just teasing) in yr7, it was dealt with very firmly with no excuses being made on the grounds of Ds's sensitivity. In fact that was a reason to deal with it all the more firmly.
But some of the stuff you've described is bullying without a shadow of a doubt.

Ds2 was blooming brilliant - he had to do a parody - in a welsh accent - of a headmaster who was standing behind him. He did it really well and got a big laugh from the audience.

Him and his friends were also a bit naughty. Lined up along the front of the stage singing brilliantly, but going "bo-dum bo-dum" between each verse.

Then a bizarre thing happened on the way home. It was pitch black and raining and I saw a twig shaped like a lizard. Was just about to say - "oh look, that twig looks like a lizard" when it moved! It was a lizard - well a newt I think, just sitting there on the kerb outside the school entrance enjoying the rain. Bearing in mind a couple of hundred people were about to traipse across there I made dh pick it up and put in in the middle of the lawn. I am worried about it now though - should they even be awake at this time of year? It's still so cold, especially at night. He was rather cute - for a newt!

Well done to Ds2 Moose.