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 know the brain is still very much the great scientific unknown, but it never ceases to amaze me how little they seem to be able to tell, even from a detailed mri.

I was told that my first mri showed evidence of recent encephalopathy, but when I mentioned I'd had serious encephalopathy as a toddler in my medical history, they then attributed it to that.

I had recently had what I thought was a particularly bad migraine a few weeks before the mri and on checking out the symptoms it did actually seem like I probably had encephalitis then (bedridden for a week and totally off my head, confused, unable to speak etc).

At one appointment they seem to panic and say there are quite a few lesions that are MS in location but vascular in type - hence all the MRIs, LPs and other tests - then all of a sudden they have changed their minds and decided not to worry about the lesions as they are probably down to my old migraines anyway - either that or my age (er ... I was 35 when that MRI was taken and there are more lesions since then, despite me no longer having migraines ).

Basically Leonie you and me and Couthy are just medical mysteries. Far to complex for them to understand - in many, many ways!

Have scanned this thread and have wondered if any of you with epilepsy could help me with our DS.

He is 32 Down Syndrome deaf and partially sighted. He developed epilepsy at 18yrs.
He has a dx of complex partial lobe epilepsy. This has been difficult to control but is now taking 1)Sodium valporate
2)Tegretol
3)Toprimate
4)Clobazam
He still has 3-4 siezures a week fortunately only 3-4 mins although post icteral period lasts about 10 mins bizarre but not aggressive PHEW but is very sleepy after rearranging the furniture
would like to know how it affects articulate peeps.
TIA

2old, sorry I can't help much as (as far as I am aware) I only had my first seizures a couple of weeks ago - hence this thread.

Couthy is the woman to ask.

Just spent the past hour getting all our papers ready for the meeting tomorrow.

Off to bed now - but probably not to sleep.

I'm not particularly articulate tbh!

It really depends which type of seizure I have as to how I feel afterwards, and how long the after-effects last for.

My absence seizures are very brief, they only last 30-40 seconds, and only very rarely longer than 2 minutes. I feel ok after unless I have had a lot in one day, when I just feel the bone-crushing tiredness.

My myoclonic seizures I don't get that sane tiredness from, but I am really irritable and short-tempered while they are happening.

My complex partials knock me sideways, I have to have at least 2-3 hours sleep when I have come round. I feel dazed, confused, just, well, odd. The best one I had was in my bank, and they called an ambulance (God I hate that, hospital's bloody useless, puts me in a bed with no sides when I'm at risk of further seizures and leaves me there for 4+ hours...). Paramedic asked me where I lived. The only answer I could dredge from my broken brain was "Home"!

The best way I can describe the feeling I have after one of my complex partials is like I am trying to roll a huge boulder uphill on Mount Everest whilst wading through treacle...and that's just sitting up!

Nothing seems to be in the right 'drawer' in my mental filing cabinet, it's like someone has gone in, thrown all the papers up in the air, and in trying to catch them and sift through them just to find the word for the thing that changes the channel on the box thing in the corner...

Nothing makes sense, and I have to sleep so that the elves in my head can do the admin and put the papers back in alphabetical order!

(I know, I sound totally weird...)

Oh, btw - certain types of migraine were reclassified as a type of seizure a few years ago, but blowed if I can remember which type/s of migraine that is!

And one of the more permanent side effects of epilepsy (though I believe it's the meds because when I was off them for a couple of years it was far better) is the bloody memory problems.

It's like my brain has been replaced by Swiss cheese.

Thing is, it's happened on every epilepsy med I've been on.

Even Lamotrigine, despite the fact that Lamotrigine didn't control my seizures AT ALL.

Before I started taking anti-convulsants, I actually had a proper photographic memory. Now I just have sawdust where the 'remembering' part of my brain should be!

My memory improved a lot when I had a couple of years off the tablets, but it was nothing like it had been. And just 10 months after starting to take them again, my memory is shot to bits again.

I'd be lucky if I could tell you what I ate for dinner tonight, let alone where I need to be and with who tomorrow!

And half the time even normal, everyday speech words elude me. Which means I then get frustrated at myself, because I KNOW that I know the word, but I can't 'find' it. Which makes me stressed and angry!

2old - Christ he's on a lot of meds! And still no full control?

Is it problems with side effects at higher doses meaning that he is on a low dose of all 4, or is he on high doses of all 4?

Just worried about the combined Zombiefying effects of that many anticonvulsants at high doses.

Is he under a epilepsy specialist Neuro? IMO he should be. Not all Neuro's are epilepsy specialists, your local Neuro might be an MS specialist, or a Parkinson's specialist.

I see an Epilepsy specialist Neuro. When I'm allowed to! (PCT funding rows...)

Usually no more than two anticonvulsants are given at any one time tbh. I find four quite unusual, even for intractable epilepsy like mine!

Couthy, I often describe my memory as swiss cheese too. I used to be famous at work for having an infallible memory - everyone came to me about everything and I had practically memorised the whole phone book for an entire university staff. These days I can't remember my own phone number, I can hardly remember things from my childhood and my short term memory is, well, non-existant.

Last week I came home after going to school assembly to find my front door wide open! Fortunately it was shielded from view by the camper van and the dogs were locked in the kitchen or I dread to think what might have happened.

Word retrieval has been a big problem for me since all this started, both being unable to find words and saying completely the wrong ones.

Leonie, doesn't surprise me - dh has been trying to call my neuro's secretary since a couple of days after the seizure with no luck so far. I'm willing to bet £££s that they haven't been informed of my A&E stay. When I went to A&E about my foot injury my GP still hadn't been informed almost a month later.

I'm not worrying about it, as she will probably want to wait until the EEG and MRI results are in before she sees me anyway.

It's been a very long day today - indie school was lovely and the staff even lovelier. Needn't have worried about what to wear, as kept my coat on the whole time and they were genuinely so lovely I don't think they'd've batted an eyelid if I was dressed in rags!

I loved the way that each time we were introduced to a staff member and they were told ds has AS they smiled, took a quick look at the notes the admissions officer had taken and said things like 'nothing difficult there at all, he's just one of our guys.' Every single member of staff had time for us and was able to speak directly about differentiating for his needs and their understanding of AS. All staff are ASD trained, including the ladies who serve lunch and all of the teaching staff and LSA's have a much higher level of training which is constantly updated.

School/LEA meeting was too short and didn't cover everything, but we did at least get the SENCO to admit they haven't been doing things the way the statement is written and manage to get an agreement that they will start doing things the right way from January. SENCO's face was thunder by the end of the meeting. There are still some outstanding problems that need to be dealt with - quite a few actually - and our advocate is none too impressed with the whole lot of them.

We have a lot to do, especially if we are going to fight to get ds into the indie. Still wobbling on the amount of travel involved, especially as we found out that they have a longer school day as well (9.00-4.00) which means he may be out of the house from 7.30 am to 5.00 pm, which is a lot for him to cope with. It took us 40 minutes to get there by cutting across the countryside at 9.30 ish this morning, so I reckon an hour is a reasonable expectation during rush-hour.

Apparently they have three minibus loads of pupils from our LEA currently attending, which is good in terms of precedent, but I get the impression we will still have a fight on our hands to get the LEA to agree to name them.

It is Leonie. The buildings themselves are a bit old and tired, but the knowledge, experience, friendliness and enthusiasm of the teachers more than makes up for it.

TA's/LSA's move up through the school with each year's pupils - right through sixth form if necessary, so they get to know what works with each child and get more and more effective in their support strategies as time goes on.

What year is dd in now? They seem very keen to talk to parents and show them round and the HT even offered to have ds1 in for a week to see if he likes it! I think they'd be happy to show you around, even if it's not for next year's y7 intake.

I asked how they would describe themselves as a school and they said they are a MS school with a specialisms in ASD and Dyslexia.

Sir Bob chatted with us for a while, after we bumped into him in the corridor, even though we didn't have an appointment with him. He said most LA's that have ASD provision tend to only have units and in his opinion those rarely work properly to meet the needs of children with AS, because they need to be properly included in the whole school experience with their needs properly considered and differentiated for, not just shipped in and out of a unit where they will either be 'in' or 'out' with the other pupils, depending where they are at any give time.

The only thing he said that was even vaguely controversial was that they are selective about who they take and they prefer not to take children who have aggressive or violent outbursts, mainly because a lot of their pupils are fee paying and they need that money to be able to run the school the way it's run, so they can't afford for parents to be unhappy about violent incidents in school. Which is actually fair enough, but could be an issue for some children who have ASD. Fortunately, ds1 hates all forms of violence and aggression, although he can get a uppity and over emotional on occasion, but it's all just verbal stuff and of course it's unlikely to happen often if they are properly meeting his needs.

They offer every child an individual transition plan, as many visits as necessary and gradual induction, so an hour a day at first if that's what they need and gradually building it up.

We were there for over two hours, so there's loads more - but overall, yes, fantastic place and well worth a visit.

I would schedule a visit for early on in dd1's year 5 then. That way you can build up a relationship with the school and so can dd. If you have Margo on your side hopefully you should be able to get her in without too much fighting.

Not so sure about ds1. He is making noises like he'd prefer to go there now and our advocate thinks we should forget the ms, even if the LA names it and fight for the indie. I agree, but can't get my head around how to do it given that we named 2 LA mainstreams to start with and then asked them to change the second choice (which of course they won't have done, because it's not protocol). Advocate has lots of knowledge and experience with our LA though, so hopefully he can guide us through it.

Such a pain not being able to tell ds1 what's going to happen, waiting and not knowing is so not good for a child who has as black and white thinking as he does. Poor kids gets tearful every time secondary is mentioned, but we have to keep chipping away or it will be a complete breakdown come actual transition.

Same here and to be honest, talking to potential schools does nothing to diminish that fear if there is the possibility of your dc ending up in a massive ms school that doesn't want him.

Ds2 is jealous of ds1 because the indie sounds so lovely. I will feel awful when he has to go to the local ms, but there's no way we could fund him going there unless we win the lottery in the meantime and then we'd have to find a way of getting him there, but I suppose if we'd won the lottery we could pay for a chauffeur to take us all every morning to drop them both off!

I have suddenly become a fan of the lottery after finding out that our advocate is funded by it. Going to buy a regular ticket from now on - so you never know ....

Mum always says we co-create our reality and if that's true I need to start co-creating a big fat windfall so all three of my children can go to a lovely inclusive school that positively promotes individuality.

Just thought - ds2 is in year 4 as well - so if we do win the lottery, your dd and my ds2 would be in the same year!