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.

Fucking hell, Leonie. That sounds just like what's going on with me where DS1's dad rang SS based on something I had put on a private fb group about allergies.

I got two teddies and two chocolates and a bracelet from DS2, from the school presents thing. It's the same I've as last year, but I wasn't going to tell HIM that! Autism

Thanks Leonie, that's helpful. I guess I am just scared of meds having had such a bad experience with Tomopax in the past.

Couthy - had to laugh at the same gift as last year. I had the same gift from ds1 that I had off him for Christmas. That said, it was a change from a giant toblerone, which is what he's bought be every single birthday, Christmas and Mother's Day for as long as I can remember. I'm only getting the itunes cards now because dh suggested it and ds1 is obviously an obsessive gamer!

Glad you told me that about Topomax - I was thinking they were probably one of the milder ones and if I can't cope with that, what will real meds like.

Sitting here in floods of tears. Just accidentally caught the ed of Crufts when I put the TV on for the Stonehenge Skeletons programme.

Really silly, but it always makes me cry, I can't watch it. I think it's because that used to be my life, dogs were my world and I used to go to Crufts every year. Haven't been since about 2006 now though, despite it only being just up the road. Struggle to marry my ethics re dog breeding and the whole show performance with my love for all dogs and sheer joy at seeing them all in one place. These days I struggle to fit my dogs in around the chaos that is my life with the dcs - and of course it's all even more raw this year with my old girlie being so poorly.

Topamax is EEEEEEVIL!! It robbed me of my peripheral vision permanently, to the point where I am classed as Visually Impaired now, It gave me a severe nystagmus that went as i stopped talking it, AND it gave me bipolar symptoms that stopped as soon as I stopped taking it!

(I should never have been put on it, as I have a family history of bipolar as my dad had bipolar and committed suicide through his bipolar. If the Neuro had bothered to read my notes or even take a decent history from me rather than hand me a prescription and tell me to leave, it would never have happened. And it made me fucking stoooooopid. It really IS called dopamax for a reason! Fucking eeeeevil med!!)

I think I sob for different reasons that most though Leonie. Most sob because it's the climax of the canine year and BIS is the crescendo of the show - for me it's pure sadness and a huge feeling of loss.

Up north, my whole life revolved around dogs. I studied them, trained and trained and trained, went to shows (although too chicken to compete) attending two dog clubs and socialised with the other club members. I guess watching Crufts always kind of gives me a thump in the stomach that reminds me how different my life is now - I don't study or train, I don't go anywhere, let alone to anything 'active' - in fact I rarely leave the house and I have zero social life. It's just a sudden stark comparison I suppose.

I do hope to go back to dogs one day - probably when all the dc are grown and I can get involved in rescue/foster and rehabilitation - assuming I'm well enough.

I was on Topomax for complex migraine - low dose - can't remember if that was 25 or 50 and it did work. Migraines reduced first in severity then in frequency and since coming off them I've only had a handful of bad migraines in almost 7 years now, but I was practically non-functioning whilst I was on them, with horrible side-effects. Weight-loss was a plus - but other than that it was horrid and really distressing. I've even found myself wondering if it was Topomax that caused my lesions, as other than the migraines, I didn't have any of my neuro symptoms until I went on it.

Leonie - yep, and it WAS fucking scary shit!

Ditto to that, Moose & Leonie. It IS such a stark contrast.

... and now I have to go and watch the school's sex ed dvd to decide whether or not we can agree to let ds1 watch it.

His teacher said the old one they had was fine, really benign and she wouldn't have hesitated to say he'd be ok with it. A couple of months back she told me they'd objected to this new Channel 4 one for being too explicit and not pitched right for 10/11 year olds and were waiting to see if they could have something different. Apparently they've now been told they have to use the Ch4 one, so have been given it to pre-watch and decide whether or not we want him to see it.

I have bought him a really good book, which I intend to go through with him first and I am concerned that if he doesn't attend he will be in an even worse place than he is now with the boys in his year, who are already way ahead of him on this stuff and quite graphic about it. BUT he is a looong way behind them developmentally, both physically and emotionally and I am just not sure he's ready for it yet.

Haven't a clue what to do - but maybe it will become clearer when we've watched it.

Ach, it was a few years ago now. 2008.

I'm far more scared about Tuesday tbh. Undxd heart problem that the docs are worried about + GA? Epilepsy possibly resulting in Status Epilepticus in recovery if the heart doesn't cause an issue? Both together = me shitting bricks.

Recovery with no help from Ex = me shitting bricks even more.

And to top it off, DS1 threw up this morning so can't go to school for two days, I've got a family support worker coming round partly to talk about HIS behaviour, partly to try to get some additional support for the next few weeks.

And then I have to be at the hospital for 7.30am tomorrow. With an ill child...

My paternal grandad and my dad both had glaucoma. GP rushed me to Eye A&E at City a couple of years ago because he was convinced I had the acute version - I didn't. Consultant there thought I had had a tia and referred me on to neurology and the rest is history.

Couthy, I hope you can get some support. I wish I could do something to help, but I live Leonie's way, so nowhere near you. All I can offer is virtual hand-holding and hugs.

Dh and I have decided he should watch the dvd with ds before he sees it at school. To be honest, I think it's a bit much and would prefer him not to see it yet, but if he doesn't, it's going to be yet another thing he will get targetted for by the bullies and teasing brigade.

I googled last night and re-read all the controversy around it. I can totally see what they are saying. Imho, some nt kids won't be emotionally ready for some of it. I read online that, apparently, after it was first shown some kids were quite distressed. I wouldn't mind as much if it was more about physical development and hormones etc, but that seems to be glossed over if anything and the focus seems to be more on actual sex, which at 10 years old for a developmentally delayed child is too much too soon. The live-birth bit of the dvd is also, imho a bit too graphic for kids their age - but maybe I'm a prude. I just don't think the first time a boy ever gets to see that part of a woman's anatomy it should be via a direct shot of a baby's head starting to emerge. I think a side view shot, that got the message across without being quite so graphic would have done the job much better.

I feel soooo sorry for the male teacher that has to watch it with them. The boys in ds's class are already stupidly giggly and acting up etc about all this stuff and the only male teacher they have is excruciatingly shy and very awkward.

Ugh. I've got all this coming, DS1 is in Y6, they do this in around May. If the DVD has changed, I might have to watch & see if I think it's ok.

Family support worker can only call a TAC meeting, no access to any REAL support.

It just ISN'T available, when you have a variable disability.

So I just have to struggle on.

They aren't happy about anaesthetising me before my heart is checked out - but there's a month or so wait for cardiac scans, and this treatment can't wait a month or so apparently.

So, rock & hard place...