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 had a terrible day yesterday. For the first time in years, I was really upset by my epilepsy. I normally take it in my stride.

I had a seizure when I was at DS3's sensory needs group. And they wouldn't let me take him in the sensory room, they took him in but only for 10 minutes I stead of half an hour.

I actually felt ok to do it, it was later on in the day I had to sleep, but they wouldn't let me. I ended up in years of frustration, because they way I deal with my seizures is whenever I can, I just carry on as normal, as if I hadn't had the seizure.

Yes, when I CAN'T carry on, I'll go home to bed, but if I CAN carry on as normal, I will. And they wouldn't let me.

They are now saying that they don't think they can allow me to take him I up the sensory room. Which means that he will miss out on the only good thing he gets, as he can't go to normal toddler groups or soft play AT ALL because of the severity of his allergies. I can't even take him to the park unless I scrub ALL the equipment first.

I was just SOOOOO frustrated that I was being told that because of my epilepsy, I couldn't do something. I always try not to let my disabilities stop me too much. Yet now other people are stopping me.

It feels like they are taking away my right to decide whether I can do something or not.

And then they spoke to me about the holiday sessions. They will allow you her siblings to come in the room, but not older siblings.

They told me to leave my two boys with Autism in the hallway with a colouring book, unattended!

Now, I then tried to politely explain that I can't leave them unattended as they have SN's too. The lady that runs the Sendory Needs group kept saying "We want you to come, and we haven't said you can't bring your older DC's along, just that we can't say for definite if we can allow them in the Sensory Needs room, and if it's busy, they will have to sit in the hallway while you are in the play room."

I tried explaining that they also have SN's, and can't be unattended AND if I want to avoid meltdowns, I need to give them a set sequence if events that will be happening, like "we will play in one room for a little while, then we will go in another room and see the pretty lights."

I told them if I can't give my DC's a set sequence of events AND guarantee that i can have them in both rooms with me then I can't risk coming for the holiday sessions.

She then very pigheadedly repeated "We want you to come, and we haven't said that you can't bring your older DC's along, just that we can't say for definite if we can allow them in the sensory needs room, and if it's busy, they will have to sit in the hallway while you are in the play room."

So basically, I am allowed to take younger DC's than DS3 (which I don't have), but if I have to take older DC's then I have to probably leave them unattended. Which I can't do. And I can't give them a sequence of events. Yet she still wants me to go?!

And she was so blunt and ducking RUDE about it too, simply because I am saying that if I can't have a set sequence of events AND be able to supervise my older DC's, that I can't go. She just kept saying that they wanted me and DS3 there, and they weren't saying that I couldn't come.

She seemed totally unable to grasp that I had never said that SHE had said we couldn't come, I was the one who was fucking saying that!!

I ended up in tears of frustration because I couldn't get through to her that if I will have to leave my older DC's unsupervised, and I can't give them a chain of events, then I JUST CAN'T GO!!

AAAAAAAAAAAARRRRRRRRGGGGGHHHHHH!!!!!!

So, the biggest prejudice and lack of understanding of my family's needs that I have ever come across has come from a Sensory Needs group for disabled DC's!

They don't understand that stopping me from going in the Sensory Needs room with DS3 because of my epilepsy is discrimination on the basis of my disability.

They don't understand that because my older DC's have Autism and other SN's, that I can't leave them unsupervised, any more than I could a baby.

I feel that it is unfair that they allow younger siblings into both rooms because they need constant supervision, but they won't allow older siblings into either room even if they have SN's that mean that THEY need constant supervision?!

They don't understand that because of their Autism, I need to be able to give them a train of events before we leave the house and for about a fortnight before, repeated about 20,000 times before they can cope with doing something outside their routine! Otherwise meltdowns will be inevitable.

And this is a Sensory Needs group for Autistic pre-schoolers!!!!

WTF?! If even they can't get their head around the fact that a preschooler with Autism becomes a 9, 10 or 14 year old with Autism, then who the hell will?!

And if even they can breach the Equality Act by refusing to allow me to do an activity (taking DS3 into the sensory room myself) purely because of my epilepsy, then that fills me with horror for whatever else I can face.

So I ended up leaving sensory needs group early because DS3 was brought out of the sensory room 20 mins early, and we can't go back in the playroom after.

I was bawling my eyes out with frustration at the level of discrimination because of mine and my older DC's disabilities FROM A FUCKING SENSORY NEEDS GROUP FOR DC'S WITH AUTISM!!!

It didn't help that I was post-ictal AND hormonal (PMT) though! I cried more easily because I was post-ictal, and I was angrier than usual at the unfairness of being unable to attend or get out of four walls for the entire Christmas period because of the PMT!!

I will literally be stuck indoors now for the entire Christmas holidays, as I can't take DS3 anywhere else because nowhere else for toddlers is food free.

And do you know the worst of it? I HAVE to keep going despite their rudeness, discrimination and lack of understanding, because it is the ONLY safe environment for DS3 to socialise that I have found, because of his allergies.

So I will have to go next week, and I will have to keep going after Christmas, because there ISN'T anywhere else to go.

Soooooo pissed off. I would love to 'bin' this group, but I can't. For DS3's sake I have to keep going.

And also, if I don't go, it will be classed as me 'not engaging' with the support offered, and Child Protection will end up being involved.

Aaaaarrrrggghhh!

Why is it ALWAYS one step forward, two steps back?!

Just makes me want to scream at the injustice tbh! Not that that will help much. On the plus side, I feel much better today. Ex had DS3 downstairs for me, so I got a lay in today, and I'll get a lay in tomorrow too, as DS3 is at my Ex's for the night.

I will hopefully get all my Christmas wrapping done today, so then I can relax!!

good grief Couthy!

I suspect she wasnt saying that you said SHE said you couldnt come. I suspect she was repeating the "I am not saying you cant come" to stop you telling her she is being discrimmatory and taking a complaint further!

I would complain its all so unfair. Also if this is how it is going to be then contact SS and tell them your son is being deprived of his only social activity due to your other DCs so can you please have someone to come and act as respite to watch the elder DCs at home or come with you to watch them in the hall!

I am disgusted to read this treatment you have received x

And moosemama I dont know how I missed this thread!

I am so sorry you have had such a frightening experience and hope that the eeg comes with good results or if at least some reliable answers as to how to help you xx

Hahahahahahaha at SS actually doing that, Coff33.

I am still waiting for an assessment from the Children with Disabilities team - it was first asked for TEN years ago, and they only agreed this month to actually even assess the DC's to see what help they qualify for!

The assessment won't be until after Christmas - I haven't even got a date yet!!

And I think you're right about why she kept repeating that phrase. I hadn't thought about it being to arse-cover!!

This is what I come up against ALL the bloody time though. Thinly veiled discrimination because I am a disabled Lone Parent, with MULTIPLE DC's with disabilities.

Basically, my family doesn't fit anybody's stupid tuck boxes because we have so many complex, interacting disabilities.

We are too complicated.

And the lady that runs the sensory needs group grassed me up to the HV, and within an hour of leaving, the HV had phoned me. She now wants to do a CAF form.

It had better not bring Child Protection to my door, I will go fucking BOOLOO!

Oh Couthy. and for you. You're absolutely right, it is discrimination and it's so bloody disheartening when the very professionals who are supposed to be clued up are the ones that seem to have the least grasp on the reality of having a child with SNs.

I suspect Coff33 is right. Her repeating herself over and over will have been pure arse-covering behaviour. We get similar from the school SENCO, always cleverly worded and repeated ad-infinitum, purely to absolve the school (and herself) of any liability for letting ds down in some way.

I can't believe she was straight on the phone to the HV either ... well actually I can - again, covering her own arse.

I will be right there standing shoulder and shoulder with you and Leonie if CP do get involved.

Coff33 thank you.

I'm feeling a bit odd today. Had a bit of a funny turn this morning - again on the blooming toilet - what is it with toilets fgs!

Not sure if it was more to do with my stinking head cold and generally feeling rough than anything neurological though, as I am woolly headed and shaky in general with this virus.

Dh ordered me back to bed, but I didn't want to be on my own, so have been on the sofa under a blanket all day instead and other than all the usual symptoms you get with a nasty cold I have been ok for the rest of the day.

Hadn't realised how worried I am about it happening again though. Think there's been a little bit of denial going on that I need to deal with.

Ah couthy, just bring the lot of them, then when she says 'leave them alone in the corridor" ask to note her stupidity advice in the red book "sorry for the paperwork but in case they have an accident, I just have to cover my motherly arse, cos someone said we need a CAF"

And when they kick off cos sensory room busy, "apologies for damaging your door, just sign here for me so SS believe me that they can't come again"

Amazing change of attitude often follows putting someone 'in charge' of recording their decisions

wish I could, but it's not fair of me to knowingly put my older DC's in a situation I KNOW they can't cope with.

The Primary SenCo is the same here too. Constant arse covering whilst actually doing fuck all.

It really annoys me though - what happened to compassion and common sense?!

Tidying up because HV and Children's Centre lady are coming round tomorrow. I hate feeling like my life is under a microscope, but if it gets what the DC's need...

How are you today Moose?
Couthy am appalled that you are still waiting for a carers/disabled childrens assessment. Could you ask for DPs to pay for a carer to look after the older children - since DS3 needs the sensory sessions, so his well being would be at risk if you cannot continue. We requested help from the disabled childrens team for years ( 8-9) but nothing happened until a professional referred because of my poor health. we now get DPs, hope you get somewhere even if it not quite the point!

Slowly getting there, but every professional seems to be saying one thing to my face but putting something different in their reports.

The Physio told me to my face that she was going to send a letter of request to DS3's GP and Paediatrician asking for a referral to Prof G in London to diagnose EDS, yet in the report it's all "Mum thinks" and "Mum says", rather than what she said face to face that it WAS EDS, she just can't give an official diagnosis!

Why do they do that?

Adult Social Care told me to my face that they would be sorting out some DP's to help me with emergency care and routine care and to pay someone to do the ironing.

Speak to my Charity lady and she is saying that they are unlikely to give me DP's as I don't meet the criteria (?!).

Still not got the report yet mind you.

God, it's just so fucking tiring.

I just want to be able to pay someone to do the ironing, have DP's to pay for a cleaner once a week so that I can keep on top of the housework even when I'm at my worst, pay for someone to come in and help me prep for dinner.

And I want my effing wet room! Adult Social Care had better have referred me to OT this time, they didn't last time (4 years ago) despite me HAVING FLIPPING EPILEPSY SO I CAN'T USE MY FRIFFING BATH AND THEIR REPORT SAYING THEY WOULD!!

Hi Magso, I'm ok. Had to cancel my EEG yesterday thanks to the horrible virus I've had since Friday. Am feeling a bit better from the virus today though, which is good because I had to go out for an hour to fetch a present for ds2 to take to a birthday party tomorrow. Unfortunately I have been hit by the exhaustion really badly.

I cried pathetically when I had to get up this morning - not helped by baking and icing cupcakes for school party day until eleven o'clock last night and then having to transport them x3 to school this morning, while I can't carry anything because of the crutches. Fortunately dh is continuing to take things seriously and made himself an hour late for work to help get everyone ready and out of the door. I honestly don't know how I'd have done it if he hadn't.

Then I went into town with Mum to get the present, parked right by the shop - so hardly had to walk anywhere, but it was really hard to lift myself on my crutches, because I ache all over and am stoopidly tired. Just school run number 3 to do now and then I can hang up my crutches for the night.

EEG rescheduled for New Year's Eve!

Couthy, we had exactly the same with physio re ds2 and EDS. Physio said EDS without a doubt and of course that they couldn't do anything to help other than a 6 week course of physio exercise that proved they didn't have a clue what they were dealing with, were completely wrong and caused him such a lot of pain and exhaustion they had to be stopped at week 2. They then advised that what we were already doing wit him in terms of generally being more active, pilates and movement in water was probably the best course of action and discharged.

I asked if they would refer, but they said I needed to go back to the same Paed who they themselves had been outraged at because he put 'lax ligaments' as a dx in his report, when they said they'd never met such a bendy child. They also said I should go back to the same paed when ds2 started having neck subluxes, despite the fact that Paed put in his report that ds's neck was unaffected. Round and round in bloody circles - it's frustrating, exhausting and infuriating. Basically they're all just pushing paper around a massive system, but no-one actually does anything.

Leonie - see above. Well put ... "same shit, different channel".

I spoke with the neuro dept at City yesterday morning and they told me their waiting list for EEGs is so short at the moment they could offer me an appointment at the end of this week - unfortunately I couldn't get childcare for either time. So hopefully if they ever find the referral letter you should be seen pretty quickly.

I know what you mean about the urgency as well - I have a seizure in November, that the AMU doc says requires urgent EEG and MRI. EEG is booked for almost month after the event and MRI not until the new year. Yeah - that's really urgent. I am just thinking that, as usual for me, tests and scans won't show anything diagnosable up or even give them a clue what's going on - so I'm not going to fret about it.

I'm wondering if the physio referral about my foot went the same way as your neuro appointment. They supposedly referred me as a faxed through urgent case at the beginning of October and I have heard zip. Since then we've had to scrape the money together to see a private physio who dx'd me and said I need to be seen at the specialist pain clinic, as it's not as simple as a course of physio and I need meds as well to sort the CRPS. Fortunately the exercises and advice she gave me got me back on my feet, but I've been on crutches since September fgs and still no sign of a referral.

Thinking of booking a double appointment in early Jan to run through all the various bits I have going on and get the GP up to date - as clearly they have absolutely no idea what's going on.

Right, off to the school - again. Just one more assembly, three more school runs and then I don't have to see the place again for two whole weeks!