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'll keep you company as long as I can Leonie. I can highly recommend the computer game option though - I'm always amazed at how much time they eat up.

Ring is kind of melted, tangled silver wire with the two irregular tear drop opals set into it in a kind of random way. I just tried to google to link to something similar but couldn't find anything.

Leonie hows it going?

Moose ring sounds lovely. Glad you had a nice surprise. I know what you mean about the stairs feeling like mountains. We have two flights in our house. I am constantly trying to work out how to minimise climbs. Well done for surviving stay and play.

I'm about to get a sofa bed so that I can sleep downstairs.

Twofold reasons, one so that I can avoid the stairs at bedtime, and two do that I can put DS3 in the shoebox room, and give DD the room that me & DS3 are currently sharing. But mostly because I can't do the stairs every night. I end up sleeping on the sofa or in the armchair frequently because my joints are bad.

Glad you managed to get some sleep Leonie.

Am probably way too late, crazy morning here, but good luck - I'll be thinking about you all morning.

We could have done with you round here last night, we needed someone to sit up with our old dog. She was freaking out at 2am. She's almost blind, pretty near deaf and has suddenly become scared of the dark. We've been leaving the pantry light on for her but she's had us up between 2 and 5 every single night for a fortnight. Dh was really cross and shouty with her, because he had a really bad sinus head, so I went and sat on the cold quarry tile floor next to her bed, soothed her and tried to work out what it was. Turns out, despite being deaf, she can somehow hear the odd noises the freezer makes. She was really terrified.

What I think has happened is that she has been in pain and paired the sound the freezer makes with the pain.

Managed to get her into our other dog's bed on the other side of the kitchen after about an hour and she seemed settled - but no, half an hour later and she was throwing herself at the door frantically trying to escape. So, I grabbed the spare duvet and made myself a bed on the sofa. Had to sleep (for want of a better word) with her lying on the floor next to the sofa, with my hand on her side for the rest of the night.

Dh is taking her to the vets' tonight. Poor chap, it's his birthday and we know it's not going to be good news. I don't think it will be today - but soon.

I have an appointment at 3.40 to discuss my results with my GP.

Leonie I expect the ordeal is nearly over now. I hope it went ok.

Moose for your bad night - you could do without that. Hope it goes well at the GP's.

Glad it went well, Leonie, and well done on your marathon effort. I hope you are at home and sleeping, very soon. X

Were you at city in one of those really bright road-side rooms Leonie?

Glad it's over and even more pleased for you that you got a decent person this time who knew what she was talking about. You must be so relieved.

Now go sleep before you have to pick up your lovely girls.

I'm so glad it went well. My dx is TLE too. The registrar was talking bollocks. Which isn't unusual, unfortunately. At least now your DH will have his 'incontrovertible' evidence of epilepsy, if she is putting in the report that they are Partial Seizures.

Still trying to process the lack of results from the Microarray - but after speaking to SWAN UK, there is a study we can be put forward to that looks at the chromosomes in even greater detail than Microarray tests.

So I need to get ALL of us referred to a geneticist now. Even my Mother and my Dbro have agreed to be tested. So they will have 7 people from 3 generations, all affected in one way or another, that they can test to build up a genome pattern from.

So there IS somewhere to go from here.

Also now a member of SWAN UK.

Still concerned about my own results - I have been told that I will DEFINITELY be having loop diathermy, plus a biopsy taken, as they are more concerned than they would usually be about CIN3 changes, as they have tested my results further?! So that was superb to hear.

At least it's been caught though. Less than two weeks for treatment seems unheard of in our PCT, so I'm thanking my lucky stars.

Trying to look on the bright side but it's not easy - I keep thinking that if anything happened to me, my DC's have nowhere to go.

DD's father lives 600+ miles away, has only been involved in her life at all since she was 12yo, and only for two weeks a year. So that's a no go. SN FC?

DS1 CAN'T go to his dad's, not even for access, as his SM physically hurts him. FC?

(Family NOT an option...)

DS2 & DS3 have multiple SN's and medical needs. Their dad has Autism, and can barely cope with having both for one day, let alone permanently.

Fuck sake - I'm not allowed to get ill like that, I'm a bloody Carer!! I am telling my body to buck up it's ideas quick sharp!!

Couthy, good to hear that there is somewhere else to go after the microarray. Hope you can get it all sorted soon.

Did they really need to scare you with that little gem about your test results. My dsis had her loop done straight away iirc. I think most PCTs are pretty quick of the mark with this stuff.

I know it's hard but try to stay positive, don't start thinking about not being there for your dcs - that way leads to madness y'know.

If it's on your mind that much, perhaps you need to find out who can help you plan for your dcs' future. Not sure myself actually, but it's something we need to get sorted for our dcs as well. It's always on the never-ending list, but we never seem to actually get it sorted.

Forgot to say - WW3 has blown up at the school for DS2!

They are up in arms about the fact that they have had a letter from the Orthopaedic consultant telling them that DS2 MUST be allowed to get up out of his chair and walk around the classroom at regular intervals because it is part of his pain management plan from his kyphosis.

They are pissed off because 1) Him being seen by the orthopaedic consultant means that they will have to put him back on SA+, because he is having outside involvement (they had taken away ALL his help!!) and 2) because they told me at the last parents evening that I have to find a way to get him to stay in his chair as it's disruptive to the class. Despite the fact that he is only doing it because he is on pain.

They HATE me today.

I'll be so glad in 2.5 years time when I can leave this school for good. And I can tell the HT, deputy HT and the bitch of a SenCo what I REALLY think of them...

You're right, Moose, it's one if those things that always seems to stay at the bottom of the never ending list.

Maybe I will try to have a chat with the CAB?

Got to go to town now, as I need to exchange something, bought a makeup set from Claire's for DS1's friend's major crush party tomorrow, but it's missing bits, so I need to kill myself by rushing to town again this week.

Bloody irritating tbh, I'm knackered.

And who has a party at 10.15am on the first Saturday of half term anyway?!

Knackered.com!

Oh ffs!

Ds1 has the same in his statement. The school facilitating it by getting him to hand out worksheets/books, taking messages and giving him a couple of jobs to do (he is in charge of keeping the class bookcase tidy and sorting the free-reader books in the corridor). It's not a difficult thing to arrange. The other thing ds's school do is make all the kids keep a drinks bottles on the side in the classroom - then there is always the excuse of needing a drink when he needs to get up and move around - and ds's school is generally crap at this sort of thing.

Urgh, at party. We always seem to have to take the dcs to them at ridiculous times as well - last one dd went to was 9.30 in the morning on a Sunday over half an hour's drive away, at a farm, whilst it was peeing down with torrential rain. Fun!

Leonie glad it went as well as it could in the circumstances.

Couthy 'a lot in your plate' doesn't quite cover it for you does it?
I'm also terrified about what would happen to the DCs if I couldn't care for them so I know the fear but one step at a time eh?

Ur, they are awful those rooms. The main reception area looks lovely, then they take you into the consulting rooms, which are just part of the old building and they're vile.

The lady you had sounds lovely - I had a grumpy fella, who had zero people skills and kept telling me not to blink when I wasn't blinking! Guess that's what you get when you go for your EEG on NYE!

I feel really rough, we're having a nightmare with ds's secondary being named or not named. Yet again we are left in limbo and unable to do anything about it. Thread here.

Getting nervous about the GP appointment now - no idea why.

The results aren't going to show anything, my tests results never do and the GP isn't qualified to speculate any further anyway.

At least I can chase my physio appointment I suppose.