Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Special needs chat, Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.

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

moosemama Wed 06-Feb-13 20:11:22

Glad you've had the bubble bath.

Sounds like a good day for you today.

I've not long got back from ds2's residential, outward-bound school trip meeting. It was horrible, dh was late home, so I had to rush up the road to get there in time. Managed to snaffle the last seat, but no sooner had they started talking than I started to feel really odd. My temp shot up and I started to feel really starey-eyed, shakey, heart racing and well - just really odd. The feeling got worse and worse, vision went blurry and I started to feel as if I was slumping in my chair.

I was sitting there trying to work out how I could escape from the room while the presentation was going on, without causing too much disruption. I was really worried I was going to just collapse in front of everyone.

Fortunately, the presentation was only 20 minutes and I managed to hang on until they'd finished then scramble to the exit. It would have been horrible to have something happen in front of all the parents and kids, not to mention staff.

Not sure how I got home really. I was walking, but don't actually remember doing it, iyswim. (We live literally 2-3 minutes' walk from the school entrance.) Dh took one look at me when I got in and told me to go and lie down.

I am anaemic at the moment and have been quite poorly for a couple of weeks with it, so I'm thinking it's probably related to that, as I've been barely able to get enough energy to move and then I had to suddenly rush up the road.

I had a few odd, scarey episodes in the night last night and didn't get much sleep the two previous nights either thanks to different dcs, so i'm pretty sleep deprived as well.

Feel dire now, all foggy headed and beyond exhausted, just want to go to bed.

All that aside. How weird to go to a school trip meeting with no concerns about how they are going to cope with my dc and no worries about he will cope (well beyond the worries any parent has about an nt child going on their first residential school trip anyway). Having already had ds1 do the same trip, I don't really have any concerns about ds2 going, whereas when ds2 went I had to have a meeting with the head (who was the trip leader) write briefing notes for all staff members and answer a list of questions the centre sent for me about his needs. This time, I just need to pack his suitcase and make sure he has enough pairs of pants and socks! grin

ArthurPewty Wed 06-Feb-13 20:21:59

goodness me, that episode sounds extremely scary. Sounds like rest is in order pronto.

That sounds fabulous re the trip though! DD1 went to Bockleton back in September, and the school had absolutely no concerns whatsoever about taking her for 3 days to the middle of Herefordshire/Worcestershire... And she di fine. Came back a bit highly strung and it lasted for a week or two, but she made it.

moosemama Wed 06-Feb-13 20:37:09

It was scary, but to be honest, not as scary as the ones I had in the night.

Well done your dd for coping with her trip. Ds1 absolutely loved it and went on a week long one this September as well. His teachers said it made their trip to see him, as he really threw himself into it all and got so much out of all the activities.

ArthurPewty Wed 06-Feb-13 21:22:45

mostly calm on this front - wonder why? maybe, with me distracted, it will be proven to be all anxiety based. I am an anxious/stressed person, there is no doubt.

ArthurPewty Thu 07-Feb-13 13:27:55

Well. Postponed. And not cos of my blood pressure, I never got that far.

Postponed cos they (Robert peel) didn't know about my head, referral to city, or tests, and it would be irresponsible to do a GA on someone who may or may not have epilepsy, cos they have no facilities in case summat goes wrong.

Relieved tbh. The place was a ghost town, very scary. No one there, and no one there to help if it goes wrong.

Will contact my consultant and tell him I want it done at one of the big hospitals, who can cope if I seize or have high bp ...

moosemama Thu 07-Feb-13 13:31:50

Oh no Leonie! What complete pita. hmm

Still, better safe than sorry I suppose.

ArthurPewty Thu 07-Feb-13 14:28:43

Well they had no facilities, they are closed at night, and if anything went wrong they'd have to transfer you somewhere else... I they didn't even have any receptionists. And the anaesthetist's hands were scabby, looked like a mechanic in his spare time. Effin frightening. I wanted to run, thankfully I was allowed to go...

ArthurPewty Thu 07-Feb-13 19:34:32

Someone on my fb reminded me that now i remember the difference between a partial seizure and a panic attack, cos i had 3 proper real panic attacks this morning on the way to this damn appointment.

And yeah, i could write a treatise on the subject. Perhaps i will. Compare, contrast, and explain WHY they are different.

I'd quite enjoy that, actually, because it would be exploring the sensations involved in both experiences and contrasting them / why they differ.

ArthurPewty Tue 12-Feb-13 10:21:52

I've had a rough few days, and woken three days in a row with a bitten lip/cheek. feeling quite a bit better now though.

moose, have you heard any more?

moosemama Tue 12-Feb-13 13:32:08

Sorry you've been feeling rough Leonie, must be something in the air.

Nope, not heard a thing and am in no fit state to start chasing. I've been quite poorly over the last week or so, with dh and my mum having to tag team on childcare and school runs. I'm fairly sure at least some of it was anaemia/b12 deficiency, because the bone-aching exhaustion lifted slightly once I started taking the supplements, but I'm still not right. Been in bed all weekend and yesterday and today on the sofa with a duvet (ds1 off sick with a cold/cough virus, so can't just stay in bed).

Sunday was really bad, I couldn't get out of bed, couldn't get my words out right, had an odd headachey thing going on and felt dizzy, even lying down and most bizarrely I have a really painful scalp - feels like someone's burned the top of my head with an iron. confused

Haven't bothered with GP, as it's all really non-specific, so I know it will just be a huge effort and total waste of time.

As for my errant neuro appointment - I assume it's gone the same way as the physio referral my GP made for my CRPS on 8 October that still hasn't materialised. Bloody NHS - totally fecking useless. How the F can someone, collapse and have two tonic-clonics in November, be deemed an urgent case by the Acute Medical Unit the next day and still not have seen a bloody doctor by February - it beggars belief. angry

moosemama Tue 12-Feb-13 13:35:22

blush Sorry for rant - just starting to get a bit cheesed off now.

I feel like I've had my life stolen, not been out of the house, other than the odd crawl to the school across the road for the kids for 14 days. I feel too weak to do anything and can't concentrate, but am so bored at the same time, the house is a disaster area and I am just lying here looking at it - cabin fever has well and truly set in. sad

Doesn't help that ds1's throat clearing tic is running rampant on top of his cough, so barely two seconds goes by without him barking - one way or another. hmm

ArthurPewty Tue 12-Feb-13 14:11:03

oh moose ;i'm so sorry. sad

dd2 develops a hack when she has a virus and it drives me batshit. I have been known to tell her to 'stop making that fucking noise!!!' blush

I keep going from confidence in my symptoms to doubting myself and thinking I'm just overanxious.

which is making me more anxious and worried.

eeg Friday, how the fuck I'm going to stay up all night Thursday is beyond me.

just spoke to a panic charity, they said panic attacks don't last 5-10 seconds, they last ten minutes or so. so why is it so hard to convince a neurologist of this?

he never phoned, btw.

I feel like I could cry today.

moosemama Tue 12-Feb-13 15:13:14

sad Don't doubt yourself, the panic charity has reinforced what the epilepsy society said.

angry for you that the consultant didn't ring. Maybe he called and didn't leave a message while you were out?

ArthurPewty Tue 12-Feb-13 16:15:13

Nope. No ringy dingy. The mobile was supposed to be the number they used, no listing in my landline's calls though either.

Yes, they did. It is reassuring - the lady said she'd never heard of a ten second panic attack.

The Ep society lady again said that the registrar was out of line, she couldnt believe some of the things he said to me. But that "non epileptic attack disorder" might be the eventual diagnosis rather than "panic disorder" because a neuro CAN dx NEAD...

yeah. NEAD is EXACTLY what i need on my records - that the LA can get ahold of, however illegally...

I would be happy to chase your appointment for you if i could - it'd give me something to focus on to get me through til Friday! lol

moosemama Tue 12-Feb-13 17:05:39

Thanks Leonie. Dh and Mum have both offered to chase up the neuro, but I just can't be arsed with it all. It all seems like such a waste of time and if they aren't worried, why should I be?

ArthurPewty Tue 12-Feb-13 17:15:53

i know, but there are cases in the news every day where the NHS fucked up and somebody dies as a result.

moosemama Tue 12-Feb-13 17:50:53

I'm not going to die though, just fade away. sad

ArthurPewty Tue 12-Feb-13 17:54:36

sad dont go, you're my voice of reason when i can't find one.

in other news, PANCAKES.

moosemama Tue 12-Feb-13 18:11:39

Dh is away on business tonight and I am supremely crap at pancakes - can bake just about anything and not too shabby at cake decorating, but I have never been able to do pancakes for some reason.

Dh did pancakes for the dcs last night and they had them for breakfast as well!

Plain old pasta for us tonight - out of a jar! blush Far too knackered to manage anything else on my own.

Dh just called to say he has to work evenings and weekends for a while and is also cancelling his day off on Friday (it's his birthday).

Also just had parentmail saying the bloody academy up the road wants all of year 6 to go to a production they're doing. They are in his school teaching every week (although they moved him down a group the week before the started doing that - coincidentally, the week we got their letter refusing to be named in his statement - coincidence - my effing arse! angry). They are coming in once a week to do sports with the year 6's and now this. So kind of them to keep shoving the place down his neck, considering they refused to take him. angry Even nicer of them to help and support all the precious nt children with their secondary transition - at the expense of my ds - who they won't even tell which bloody school he's going to, let alone start transition support for. angry

I have to send the slip back by Friday and we still won't even know which school he's going to by then.

I have suddenly developed a rage of volcanic magnitude about all this. angry

He doesn't know they rejected him by the way - he thinks the LEA are still thinking about which is the best school for him to go to. sad

ArthurPewty Tue 12-Feb-13 18:14:07

Bless his heart. That is so awful. I'm afraid i'd already have exploded and be covering everyone in shrapnel - you're doing a much better job than I am at holding it together...

Poor DH, too. My DH's 40th is coming up in March, birthdays are such a quandry. He says if i throw a big party, he will walk out of it. LMAO.

moosemama Tue 12-Feb-13 19:04:10

I have spoken to him. He doesn't want to go. He says it will upset him, as he knows he probably won't be going there and also he's afraid of some of the story for this particular production.

I have told him I will book a follow up appointment at the GP for that morning, to have his chest checked and asthma medication reviewed, as well as following up on his blood results. Mum and I will probably take him to the local cafe for a milkshake and gf scone as well, as compensation.

Lol at your dh - I always say exactly the same to my dh about parties. I had a surprise party once and hated it with a vengeance.

My dh was desperate for a big party for his 40th the year before last. He had a Zombie party at the Gin Parlour in the Jekyll and Hyde pub, Steelhouse Lane. Loads of people dropped out at the last minute, but we had a blast anyway. I tried way too many types of gin, given that I'm a hopeless lightweight when it comes to alcohol and had never had gin in my life before. Ended up rather partial to the odd drop of Tanqueray - athough my favourite was Junipero which is ££s. I was Little 'Dead' Riding Hood! Even had a basket with a puppet wolf in it! blush (It helps when your little sis is a Goth who can do your make-up for you! grin)

This year is a much quieter affair. We have our oldest and dearest friend coming to stay on Saturday and are just going to chill out, listen to some music and maybe watch a movie.

Dh's blooming present from the dcs hasn't arrived though, so that's one activity crossed off Saturday night. Dh and his mate are big kids and the dcs have bought him Tony Hawkes Skateboarding for the Wii - complete with wifi skateboard.

I will scream if it doesn't arrive (Amazon, but not trackable). I've already gone into battle today with the gluten free company I spent a fortune ordering specialist gf Chinese food from for ds1's Chinese food tasting tomorrow. They've had my money over a week, no sign of the goods and no replies to emails either. Finally got a response to yet another complaint email today, blaming their computers, apologising and saying it will be here tomorrow - too bloody late! Apparently they've put some extra products in to make up for it - fat lot of good that is, when the tasting day is tomorrow, but the food's arriving too late for him to take into school. Best hope is it'll arrive first thing and I can get someone to drop it off at the school for him. Tasting is in the afternoon at least. £8.00 delivery as well! angry

ArthurPewty Tue 12-Feb-13 19:09:50

This year is a much quieter affair. We have our oldest and dearest friend coming to stay on Saturday and are just going to chill out, listen to some music and maybe watch a movie.

This sounds idyllic. Kind of thing DH would want, except without any friends - he hasnt got any except his family. An friends we have are ones I've made iyswim.
Usually other mums, usually with HFA kids, from school. Our school has an unusually high number of high functioning autistic children, for its socioeconomic and geographic location iyswim...

Sounds very sensible for your DS1 not to go. At least you've given him the hoice and he's told you what he wants. Milkshake should make it up to him. He sounds like such a sweetheart.

OMG re the chinese company, that's awful. GRR. Doesn't matter what extra they throw in, its too late. Douchebags.

moosemama Tue 12-Feb-13 19:13:44

We have a very small group of friends from dh's uni days who are all over the country and we only see very rarely.

Interestingly, they all either have ASD (mostly undiagnosed) have children with SEN, particularly ASD or work in SEN!

I am very proud of ds1 for making his own decision about the trip. He is a sweetheart <biased> but I am still really looking forward to him going back to school tomorrow. wink

ArthurPewty Tue 12-Feb-13 19:18:00

Its funny who you meet and become involved with on a friendship basis, isnt it? There are a huge number of us with HFA kids, and we've all teamed up, lol. Sharing knowledge, etc. I think the school could actually be frightened of all of us if we teamed up.

I wasnt around for DH's uni days, they were ever so slightly before "my time" - but i think he made it all the way through uni without a single friend, ever. He only had one childhood friend through primary/secondary school. Am i surprised at his own HFA diagnosis? Not really. It fits him.

I think sometimes, that our kids are more sweet than "normal" ones. I really do. I love how they are endearingly honest, unabashedly straightforward, without all the shades of grey and subtleties of other children, the manipulation, the mind games, etc etc. I think that makes ours better people because they aren't full of nastiness and conniving and etc etc. I certainly appreciate knowing what i'm gonna get, instead of being tricked, conned and fooled into saying or doing something, Kwim?

moosemama Tue 12-Feb-13 20:04:17

Oh yes - I know exactly what you mean!

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now