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

(997 Posts)
moosemama Sun 25-Nov-12 22:37:59

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. sad)

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. shock

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

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. blush

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. hmm 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. sad

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 11:13:11

And no, men don't EVER seen to offer to help - if I have had a bad seizure and injured myself, I have no choice but to call my Ex-P, and he doesn't get that it will be impossible to clean the house, look after a toddler with SN's, go shopping (daily shopping as no effing car, Ex-P doesn't drive either as he has ASD and dyspraxia), look after the older 3 DC's (all have various SN's) and stop them from killing each other all the while being injured and exhausted from a seizure...

I HAVE to spell it out to him and say "I need you to stay off work today, I can't do this all alone when I'm recovering from a bad seizure"

If I don't come out and say it, he doesn't seem to realise. Pisses me right off - if the tables were turned, I'd offer!!

moosemama Tue 27-Nov-12 11:44:44

Couthy, ds1 had resistant strep that lead to resistant scarlett fever when he was 4. It was around then that he lost many of the social skills he had and I've always wondered about the connection. I even read up on PANDAs at one point. Can't imagine getting appendicitis in the middle of all that - and then having to go to school while still recovering - your poor ds. sad

To be fair our school have never involved the EWO to date. They were very good when ds2 was hospitalised with pneumonia followed by weeks at home and didn't make a fuss when ds1 had to be taken out for a week at a time to extend the holidays due to anxiety when he was having a breakdown before dx in y3 - but that was when we had a good relationship with them and at this point there simply is no relationship.

Dd only started nursery in September and she has probably had the equivalent of 2.5 weeks of days off sick so far. It's just been endless vomiting viruses and coldy/fluey bugs one after the other and she's caught every single one.

Dh used to be very good, but it's like he's just had enough and lost patience with me now. sad He told my mum, his mum and the friends we were away with at the weekend that I was completely fine on Sunday and was over it. hmm angry Didn't actually bother asking me how I felt, just assumed.

This morning he told me it was my fault for not acting more sick - so how was he supposed to know. shock

Apparently I should have acted sicker at hospital and let them admit me. Only if I had, there was no way ds1's needs would have been met and at that point we didn't know he was going to start being sick and have to be off school, so he needed a normal bedtime routine, followed by a normal morning routine and start to the week.

When I went to pick them up after the hospital he grabbed me so tight and just wouldn't let me go, he was in a desperate state and no-one could see it but me. sad They were just all 'ah, look he's really missed you'. hmm Then dd woke up and sobbed and sobbed and clung to me. We've had lots of sobbing and 'I missed you, I wanted you to come home' stuff from both of them since as well. There's no way either one of them would have coped if I'd let them admit me and whilst ok the EEG and MRI would have been done more quickly, it's not as if I really needed to be in hospital - I just needed to be home ... with someone looking after me and the kids for a day. Not a lot to ask really.

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 12:12:11

Actually, DS1's almost non-existent social skills have deteriorated even further since he had the time off.

I keep getting called in to talk to the teachers about it.

He hasn't been assessed for Aspergers yet, but I'm going to bring it up with the school at Parents evening on Friday.

At 8yo, he had a measurable IQ of 132, yet he has the social skills of a squashed ant. He overrides people, expects everyone in school to work by the school rules, even the teachers, and gets angry and frustrated if the teachers seem to be doing things the DC's aren't allowed to do.

He doesn't have any friends, is constantly bullied to the point where he has been hospitalised once, the school did about 4 sessions of play therapy for him in Y4, but nothing since.

He has been off the playground since his appendectomy because of the risk of injury, he is in Lunchtime club. The teacher keeps saying he needs to be back on the playground, but a) He isn't medically ready to be near flying balls, and b) He's happier in himself not being out in the playground.

We shall see how it goes on Friday, when I ask for assessment, as his Social skills have been an issue since pre-school, and even the school are having huge issues.

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 12:12:26

What's PANDA's?

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 12:14:21

God, I get the "well, you don't look that ill" and "you cope so well, I didn't think you needed any help" from my Ex-P. it makes me quite ragey! angry

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 12:21:52

Ah. Have read up about PANDA's now. Possible, though a lot of the behaviours have been permanently present, since preschool age or younger, like the tics and inflexibility of thoughts, lack of attention span and oppositional behaviours. Though they HAVE worsened since he had strep throat, they have always been present, so I think he has underlying Aspergers anyway, just need to get the school to push for assessment.

moosemama Tue 27-Nov-12 12:47:39

Ds1 was always 'different' even as a toddler, but we definitely saw a regression - for want of a better word - when he got the whole strep/scarlett fever thing.

Interestingly he came down with the same thing, in the same pattern again in y3, which was when he completely lost the ability to cope at school and basically had a breakdown. Just too coincidental for us to ignore really.

I do know he had AS from birth, but feel that certain aspects of it were significantly worsened by the strep involvement.

As usual though, the UK is light-years behind everywhere else with this stuff and there's no point in even mentioning it to docs over here, as they will just react to it as if it's some way off the mark crank theory.

moosemama Tue 27-Nov-12 12:48:48

Dh has now sent me a text saying he was going to ask if he could have the afternoon off, but his boss is in meetings so he can't. hmm

I sent a snappy one back saying not to bother, that we will cope as usual and that I am used to being on my own and just having to get on with it - no reply from him to that.

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 12:53:59

It's funny, DS1 started his slow fall to pieces when he moved up to Y3, too. Academically he is still fine, when he can concentrate (!) (not always possible in a noisy classroom), but socially and emotionally, not so much...

He is depressed IMVHO, and is often 'scapegoated' at school, even when somebody hurts him and he tells on them, he still is the one getting into trouble.

The best one ever was in Y5, last year. One girl accused him of hitting her at lunchtime on Wednesday, and the next day he was told off by one of his teachers. (His class had a job share, Mon-Wed teacher 1, Thurs-Fri teacher 2)

It was only when DS1 INSISTED on the teacher looking in the register that they realised this girl was obviously lying...*because DS1 had been off sick on the Wednesday when he had apparently hit this girl!* they never apologised to him, either, until I insisted!

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 12:55:12

You sound like me and my Ex! grin

I think that they just don't SEE it, tbh, because they are not 'there' in the sane way as you or I.

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 12:56:53

I can't WAIT for DS1 to leave this school. Then just two more years of it with DS2. DS3 won't be in MS, so on DS2's last day, I can finally tell the HT and the SenCo what I REALLY think of them!!

moosemama Tue 27-Nov-12 13:12:27

I think it is fairly common in y3, as lots of things change, from the workload and classroom set up, to expectations of maturity and responsibility and even the social side of school. It's as if they expect all children to suddenly grow up over the summer holidays. hmm Lots of children struggle, but those with an underlying ASD often can't cope at all.

shock at the girl accusing him of hitting her when he wasn't even there! angry Just goes to show the school had done nothing to deal with the problem and address the attitude of the staff and his peers.

We had similar issues - although not as severe, earlier in the juniors, until I printed out the section of Attwood's book on subtle bullying of children who have AS and spelled it out to them exactly how he was the victim.

Similar thing to you though - no apology - although they did finally deal with the perpertrators and have been pretty hot on it ever since.

I never thought I'd be counting down the days until ds1 goes to secondary. Despite all the worries associated with that, I can't wait for him to be out of there either. Unfortunately I am currently facing another 8 years (including the current academic year) of having dd there and ds2 has another 2 to go after this one. <sigh>

magso Tue 27-Nov-12 13:25:21

Moose I am so sorry about your symptons.
I had a similarly odd but unexplained episode( also on rising for the loo) a few years back and went on finding new sore patches over a few days. I also keel over sometimes but these are old fashioned faints with brief warning. ds (SN ASD/LD) has been taught to go to either neighbour. He is big enough now to check recovery position. He is not frightened because with his ASD he sees this as just one of the odd things people do (sleep on the floor) and I have come around under his blanket. We just got him a mobile phone (well an old one of dhs) with a MILO sim which allows us to give him a few numbers for help. He knows to go out side to get a signal (oddly it works next door!). I hope you get some answers soon!

ArthurPewty Tue 27-Nov-12 13:52:48

Y3 & some of Y4 has been when it has fallen apart from DD1.

I fear having a seizure in front of the kids. I've had 3 SPS this morning sad
Thing is, i can usually blag my way through them, and keep going.

God help me if it ever generalises. 15 years ago they were generalised TCs, so am gobsmacked they're "only" SPS this time.

ArthurPewty Tue 27-Nov-12 13:58:35

Message withdrawn at poster's request.

TheLightPassenger Tue 27-Nov-12 16:11:33

If anything I imagine an EWO might improve matters - as either they will do nothing OR will show an interest in the fact that DS has anxiety related absence due to school not supporting him as per statement.

sorry DH is being a bit of a tool . carry on spelling out when you need help, you shouldn't have to but...

moosemama Tue 27-Nov-12 17:03:50

Hi magso, long-time no see. smile I made dh train ds2 up on how to call his mobile an use the landline this morning and then left written instructions by the phone as well. He fluffed it a few times, but we have told him if he fluffs, just press the red button and try again until it works.

Unfortunately, if I told them to go outside to get a mobile signal, I can only imagine the chaos with the dogs escaping onto the road! shock No-one ever shuts the blooming door round here.

How are you doing these days?

Leonie, I think I know the independent secondary you are talking about. I've read and heard a lot of good things about it and people in our local support group speak highly of it, but as I said upthread, it's at least an hour across the city for ds1 to get there and he doesn't travel well.

They have amazing enrichment choices and ds was almost interested, until he realised none of his friends, let alone his best friend would be going there.

Apparently our LEA buy in X number of places there every year, but don't always fill them and end up having to pay anyway. So, we'are crossing our fingers that things will work out at the school he wants to go to and double crossing that if they don't we will have the independent to fall back on.

Interesting that Margo recommends it, we've only been able to get veiled references and vague info from the professionals involved with ds about it. Apparently they aren't 'allowed' to suggest which school might be best for him. hmm

If I'm right about which school it is, there was a nice write up about it in the Birmingham 'Families' magazine for Autumn/Winter.

Thanks TLP, unfortunately, the absence we would be hauled up for relates to dd and ds2, rather than ds1, so EWO won't be any help.

moosemama Tue 27-Nov-12 17:09:20

I'll pm you a link.

ArthurPewty Tue 27-Nov-12 17:21:37

Got your pm, replied. And spot on re the indep secondary in Edgbaston...

ArthurPewty Tue 27-Nov-12 17:32:56

everyone we spoke to said they would be unable to suggest secondaries for DD1 - except Margo. Bless her. She'll also help us fight for it, if we decide its the right place for DD1.

EllenJaneisstillnotmyname Tue 27-Nov-12 20:03:46

Wow, moose, I've been off MN for a couple of days and didn't see this latest thread. So sorry it seems to be going from bad to worse. No advice, I'm afraid, my epilepsy knowledge doesn't go further than DS2's (hopefully) one off seizure last year. One thing I did pick up was that about 10% of people have one seizure in their lives and only a small proportion go on to have more. (hopeful again) But with your other neuro issues it's more of a concern, I guess. sad Hugs and honks. X

moosemama Tue 27-Nov-12 20:10:08

Thanks Ellen. smile

The hospital doc explained that it's not classed as epilepsy until you've had two or more seizures (on separate occasions, not two in succession like I did) and that the vast majority of people never have another one. I'd love to think I'll never have another, but know that would probably be very naive, given my history.

Dh has finally decided to sort himself out after we had yet another fight on the phone earlier.

He cancelled his user-group/forum thing tonight and got the deputy chair to host it instead and has booked tomorrow off so I can stay in bed and rest, while he does the school runs, sorts the chaos of unpacking and general household mess left over from the weekend and makes sure we have everything together for the SEN advocate we have coming over tomorrow night.

EllenJaneisstillnotmyname Tue 27-Nov-12 20:14:02

Phew, glad he's seeing a bit of sense. Remember this ASD thing, did you ever think maybe your DH...? I know he had a head injury a few years back which may explain his lack of empathy, but he does seem to need telling, rather than being able to work it out for himself.

moosemama Tue 27-Nov-12 20:18:50

I get where you're coming from Ellen, but he used to be the sweetest most thoughtful person before his head injury. He would never have hesitated to put me first in those days. In fact, I used to be so well looked after by him that somehow it makes it harder to take that I feel so on my own these days. sad

EllenJaneisstillnotmyname Tue 27-Nov-12 20:30:56

sad Sorry, I've gotten into the habit of seeing ASD everywhere.

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