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.

Not much chance of a good night's sleep tonight. Ds1 is off on one big style - still wide awake and wired. He's living on his nerves poor kid.

Good luck today Leonie, I'll be thinking about you and sending strong vibes.

Today is .... well another day I suppose, thanks for asking.

Ds1 is still wired, but managed to arrange to speak to his old y5 teacher yesterday, after I repeatedly told him he had to tell the school about school problems or they don't know what's going on and can't help.

It turns out he's been being bullied all term, by three separate boys - so no escape. He did tell the teacher yesterday though and told her in detail what they've been doing and saying to him (not good - all 'freak' 'weirdo' etc and basically down to the way the school have misapplied the statement so he has been marked out as different). I'm not sure if/how she's going to deal with it, but we shall see.

He was definitely a lot happier after downloading all the school related crap to her yesterday, but was then wired in a completely different way - as in bouncing off the walls.

Then he got all upset about secondary transition again at bedtime and ended up wetting the bed in the middle of the night, which is something he hasn't done for over a year and usually only happens if either he's been glutened or he is beyond anxious - and I am 100% sure he hasn't been glutened.

I am going to book him a GP's appointment and on the advice of the advocate we are working with, ask for them to try again for a CAMHS referral. Advocate says it's pretty much a given that CAMHS will refuse to see him, but we need to get all this transition related stress and lack of coping with y6 on record to prove his need for the indie school if/when the time comes.

He has a SALT triage assessment this afternoon, so I have to pick up all three dcs early from school, which of course will stress him even more.

Dreading tomorrow as well. Ds1 is singing in the choir in assembly so I have to go to that, then I have parents' stay and play in the nursery for the afternoon and of course I am public enemy number one at the school at the moment. Had to speak to ds2's teacher yesterday about picking him up early today and if looks could kill ...... well let's just say I wouldn't be typing this post!

Then Saturday is the school christmas fair - so I have to spend a couple of hours there again.

Well done Leonie!

I am so relieved you are finally being taken seriously.

I haven't done anything Leonie. It's you that made it happen.

As for ds and the bullies, well ... two of the boys have been taken out of class and made to apologise to him today. He came rushing out of school, wrapped his arms around me and told me straight away. He was so pleased. I really wish I could be as convinced.

The third - and worst - bully hasn't apologised as yet, but I already know that boy has issues and has been in trouble lots of time before - so not sure what is going to happen about him.

Interesting how one conversation with last year's excellent teacher was enough to make things happen after a whole term of being fobbed off whenever he reported anything to a teacher or dinner lady. (I mourn the day he had to move up from her class. )

On one occasion he told one of his favourite teachers (who happens to be one of the bully's CT) what was going on and was told that it was 'very unlikely, because X is normally such a good boy'. Er no, X is a vile little bully who recently gave another child a black eye by throwing him into a peg in the cloakroom. He's also the child that has several times in the past few weeks almost knocked me off my crutches by pushing me out of the way on his scooter. According to ds1 all the kids know what a horrible little boy he is - yet his teacher thinks the sun shines out of his y'know what. It's no wonder ds didn't want to tell anyone at school what was going on when he was dismissed so flippantly - even he knew they were using his AS as a way of blaming his social skills for the other child's bullying behaviour.

SALT appointment was a complete waste of time as predicted. It was a triage appointment to see if he qualified for any NHS support. Guess what .... he doesn't. Basically she said she could tell from the two minute walk down the corridor (when he said all of three words) that he has good verbal skills and the notes say that he has excellent verbal comprehension.

Tried to talk to her about pragmatics and appropriate social communication skills, but she just said we need to keep discussing it with him and that we are obviously good parents and very aware and we need to just keep doing what we are doing. She also said he needs a social skills group at school and we should research different social skills programmes and tell the school he needs to practise. I said there was no chance of him getting any help at school, she asked which school and said it was one of hers and she was very suprised they weren't cooperative.

I told her that he isn't as literal as many children on the spectrum and she raised her eyebrows and looked at me as if I that wasn't possible. I then explained that the reason we ended up there was precisely because he has excellent vocab and tested high for verbal comprehension, yet he often doesn't seem to understand simple instructions or statements. Also, he applies phonic rules too rigidly and as a result mispronounces simple words no matter how many times he's corrected. (Apparently we need to just create a little book of tricky words to deal with this. )

So, as expected NHS SALT don't deal with the semantic pragmatic side of things and it's just something parents have to work on themselves.

Still, onwards and upwards, that's another thing tickboxed for the paper pushing arse-coverers.

Well done leonie.
Hope you get some answers x
Moose...oh fgs! Like the comm paed who watched ds1 take 4 steps and told me that as he saw no tip toe walking ds1 did not have asd.
Ds1 then proceeded to tip toe walk/prance the whole way back to the bloody car!...sigh
So sorry wrt the bully situation.
It's awful :( glad your ds was happy they apologised.

Thanks folks.

Well, dh has just rushed dd off to OOH GP. Temp of 40, breathless and limp. I've had to stay at home with the boys. She's been coughing for weeks, but just claggy back of the throat ish. I thought it seemed to be changing this past week, but she has been insisting she was fine because she knows being poorly means missing nursery.

Picked her up today and she was really pale with big dark eye circles and obviously beyond exhausted. She fell asleep in the car on the way back from the SALT appointment and then could barely walk from the car to the house. Got worse and worse, redder and redder and didn't move for the rest of the evening.

I feel awful now, my gut feeling was that she needed to be checked out by the GP, but she seemed to keep perking up and they are all so blooming tired at the moment that I thought I was over-reacting.

for your DD, hope she is ok.

I'm glad to hear you have your referral now though, Leonie.

OOH GP useless.

Said her chest is clear, when dh and I can hear it's not without a bloody stethoscope.

Apparently he went on and on about how really concerned he was about her high temperature - then he prescribed paracetamol and told dh firmly that he should give it to her every 5 hours for the next 7 days!

Nurse was better, gave her some ibuprofen as calpol hadn't brought temp down much. She's just had an ice lolly and her temp has finally started to come down.

I will be taking her to the GP's triage clinic first thing tomorrow. Not least of all because on top of the chest, she's pointing to her tonsils and saying they hurt and the OOH GP didn't even look in her mouth!

Leonie, you can probably find out via the receptionists at your GP's, as they will have the referral letter on file.

That's what we're doing Leonie, learned it was the best way to control a high temp when ds2 had pneumonia.

Nurse was so concerned about her temp she gave her the ibu an hour and a half after the first lot of calpol.

Fortunately, we have a freezerful of ice lollies left over from the summer, so that will help as well, as dd wouldn't eat a thing at tea time but wolfed a large ice lolly down in seconds.

She's sleeping comfortably now, so I'm hoping it turns out to be a peak/crisis and she is a bit better in the morning.

I have to go and see ds1 singing in assembly at 9.00 am and Mum was supposed to be coming along. Now she is going to have dd and call the GP for a triage appointment so we can go as soon as I get back.

Dd is so not going to be happy when she realises we are going to miss Mummies Stay and Play Christmas Crafts at her nursery tomorrow.

It's about blooming time your GP sat up and took notice. I bet she panicked when she realised she had done nothing when you went to her with your concerns and then you had a seizure afterwards.

I always come out of the doctors and then remember something I wanted to or should've asked. Despite all the effort it takes to get an appointment, I'm usually desperate to get out of the door, so rush out and forget something.

Ooh gp can be so useless can't they?
Ds2 has had a bad cough for weeks now.
They finally have him ABs last weekend but he is still coughing.
No temp though, although, like your dd, his was almost 40 degrees at be point.
Do take her back to go today.
Hope she feels better soon.
Our gp told us ds2 may be coughing for 6 weeks :(

Ah, poor thing.
I hope she feels better soon leonie.
Ds2 is back at pre school as his chest is clear now but last weekend he was coughing so much he was vomiting :(
I am still concerned its whooping cough tbh but the gp was spectacularly unhelpful "well, its a possibility" :$

Leonine why didn't you go to a and e?
You must phone an ambulance next time!

I hate those 'little' seizures. Be careful tonight and rest (HA!), Leonie - I find that often, the shorter ones are a signal that I'm overdoing things and I need to slow down, or I will have a longer or bigger seizure.

One thing I have found over the years since my epilepsy diagnosis is that I need to listen to what my body is telling me, and slow down when my body tells me to, whether that's convenient or not!

Pacing yourself and learning YOUR early warning signs of a bigger seizure is key to helping get better control of your seizures IME.