Here some suggested organisations that offer expert advice on SN.

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

SallyBear Sun 25-Nov-12 22:44:57

Moose how absolutely terrifying. Next time it happens you MUST get an ambulance out. I had a weird Aura migraine last week, thought I was having a stroke, but was worrying about the DC. Sometimes I think I take the mummy but to the extreme. Ambulance if it happens again. PROMISE!

moosemama Sun 25-Nov-12 22:49:59

I know Sally, but I just wanted to crawl into bed and sleep. I just felt like it was over, I was in my undies, it was throwing it down with rain outside and I didn't want to end up being shipped to hospital in Telford when I needed to get back to my poorly dcs asap.

Not to mention an ambulance had literally only just left the hotel with another resident in the back! (My friends thought it had been called for me and that was before the fit/thing. blush)

werewolvesdidit Sun 25-Nov-12 22:52:59

The weird thing about epilepsy is that everyone's epilepsy is different and personal to them. I am really sorry about what has happened to you but I just want to tell you that it's not the end of the world. They will probably wait until/if you have another one to diagnose you with epilepsy so it is still early days. It does sound like they were seizures to me but lots of people can have one off seizures that are not epileptic.

You still do need to get all your tests done but about 60% of people with epilepsy will have normal results. If you do end up on meds, the most important thing to do is give them a couple of months to work and if you are not tolerating them, make sure you change them. What is one person's wonder drug is another person's nightmare. My son is on keppra (after a shitty experience with epilim) and is doing really well. Over 2 years seizure free and no side effects with the keppra - no one would ever know he has epilepsy.

Join the Epilepsy Action forum too. Good luck.

Turningupsidedown Sun 25-Nov-12 23:07:31

Hello, that sounds very scary. I can't say it was for anything like the same reason, but I fitted as a child, so did both my sisters, two of us seemed to grow out of it, the other still does it, particularly in response to pain. It has happened once to me as an adult though when I was sat on the toilet and managed to hit my elbow on the edge of the sink right on the nerve. I came to in exactly the way you described, hearing a strange whining noise then realising I was making it, and the banging which was also my head against the wall, and found myself over by the door. So in answer to your question, yes I think you can be aware of coming out of a fit. We would all be very sleepy afterwards as well and just want to go to bed, but you really must get an ambulance. There may be all sorts of reasons for this to happen and the nearer they can check you out to the actual event the more likely they are to be able to find an answer to what it is. I do remember it was a really odd and scary sensation so I am not surprised you feel really upset about it. Hope you can get some answers soon.

moosemama Sun 25-Nov-12 23:07:54

Thank you werewolves.

I am not really scared of having epilepsy, I've known for a long time that there was something neurological going on and until recently was led to believe it was probably MS, which I was more scared of really, due to the possibility of it being degenerative.

I am however, terrified of having yet another MRI. I still have flashbacks to the last one and swore I'd never have another no-matter what.

The other thing that scares me is having a seizure when I'm on my own with the dcs. The other neurological events I've had were less obvious and I've always been able to explain away even the major events to the dcs before, but I think it would really scare them - particularly ds1, who has AS, if they were to witness something like what happened last night.

I have just googled a little and do see what you said about everyone having a different experience of epilepsy. I just read some forum posts where some people had some awareness during a seizure and yet others had none at all. My MIL was dxd with epilepsy a couple of years ago. She was having long freezing/absence type episodes then suddenly started having GMs and she doesn't remember a thing about hers, which is what made me question what happened to me, because I definitely became aware of a sort of throaty growling noise that I realised was me and was also aware of the last few head bashes on the toilet.

The toilet fgs, of all the places it could have happened, it had to be in a room full of cold hard porcelain objects, just perfect for smashing my head against. blush Not to mention the embarrassment factor of it happening when I'm sitting on the loo in my underwear. blush I'm actually quite glad no-one else was around to see it. blush

moosemama Sun 25-Nov-12 23:11:11

Thank you Turningupsidedown.

The AMU doctor made me promise I will go straight to the nearest hospital if it happens again and made a huge deal about saying she was only discharging me because dh and I seemed like very sensible people who would go straight back at the first hint of anything happening "Wouldn't you Mr & Mrs Moose". blush

moosemama Sun 25-Nov-12 23:12:41

Am off to bed now.

Thank you all for taking the time to offer your support and advice to me so late of a Sunday evening. thanks

CouthyMowEatingBraiiiiinz Mon 26-Nov-12 01:38:40

What you describe is exactly how I come round from a seizure, even down to the growly noise that I realise is me. It is possible to have some awareness when you are coming round.

If it is epilepsy, remember that 70% of people with epilepsy have their seizures fully controlled by medication, another 20% will gain partial control, and just 10% have intractable seizures. I lucked out and fell into the last 10%.

The worst ones ARE when you are on the loo.

If you take the time to explain it to your DC's, they will soon learn to cope. Mine have. My older 3 know how to put me into the recovery position and press speed dial 2 to get to my emergency contact, and this is despite their own SN's.

There are things you can do to help if you have younger DC's too - a wrist strap that attaches the buggy to you (long enough not to tip the buggy if you fall, but not so long the buggy goes in the road), changing babies nappies on the floor at all times, never on a bed, sofa or changing table. Playpen up in the room to stuff baby or toddler in if you feel in any way funny.

NEVER ignore it when you feel that odd 'neurological issue' feeling, and make sure you call someone to sit with you. That is your early warning system. Listen to your body, and take heed of your seizure warning.

I think it is telling that it happened when you were on holiday - I often find my seizures are at their worst not when I'm actually stressed or busy, but when I stop to rest, or after I am calm.

What did you find so hard about the MRI? I have to say, I was so tired at the time I had my last one that I fell asleep in there!

They play birdsong in my one. They don't scan your whole body for seizures, just your head.

A tip for the EEG - get lots of cheap shampoo to wash the glue or gum out. Hopefully they use the gum at your hospital, it washes out easier than the glue.

I'll come back if I think of anything else.

CouthyMowEatingBraiiiiinz Mon 26-Nov-12 01:40:42

What other neurological events? I'm wondering if they might be connected?

madwomanintheattic Mon 26-Nov-12 04:55:26

Oh moose.

I really really don't want to nag. I know how worried and scared you must be, but it's only a week or so after the TIA-type episode. sad

You know you can't ignore this, right? You know you can't keep hiding? You have to go to the hospital, any hospital, with these new symptoms? Whilst they are happening/ at the time, so they can run tests and get some more clues?

and you know they need to run more tests and check for any progression, right? Can you ask for GA for MRI? They will do GA for dd2, but I don't know whether you would need to be awake or yours...

Lordy, lady, I'm worried about you. <very gentle hug>

TheLightPassenger Mon 26-Nov-12 08:13:33

I'm so sorry you had such a rotten time, what a terrifying experience for you sad. Like Madwoman, i hate to pester, but you really, really must call the neuro today, rather than wait for the paperwork to catch up with you. There are other options for the MRI, as madwoman says, GA or sedation. You may need to go to a further away hospital to have it done though.

moosemama Mon 26-Nov-12 10:06:24

Hi Couthy thank you for replying and for all your advice. I have been working on making sure the dcs know contact details and address etc. Ds1 knows our phone number and address etc, but struggles with the phone (which is odd for a child as technological as he is). Ds2 seems completely unable to retain the information and dd (3) knows our name and address, but not how to use the phone. I think we need to have a sort of training programme for them asap. I am embarrassed to admit I can't work out the speed dial thing on our phone. We had it all set up on the old one, but it seems to be more complicated than just dialling on this phone for some bizarre reason. Might actually get a new phone that has a simpler system, as we need it to be as easy as possible for them I think.

In answer to your question re other neuro episodes.

They initially happened across the winter of 2010/11. I kept having the feeling as if either I shot down a long tunnel or the world suddenly shot away from me (sorry very hard to explain) then if I tried to speak either my words wouldn't come or were very slurred and basically I just sort of slumped. I can't remember a lot of the details, but the one dh videod showed me just as I started coming out of it (he fumbled his phone) slumped and slurring and doing an odd repeated swallowing thing - I did say at one point I felt like it was a big effot to swallow - oh and both hands had curled up inwards, but not really badly.

Since they started I had some regular, some continuous low-grade neuro symptoms such as buzzing and tingling first only on one side, but now after a year or so on both, vision problems (blank patch in right vision) tremor and word finding and memory problems.

Took video to GP, who sent me to neuro, who thought MS and sent me for a raft of tests this time last year, although I hadn't had any significant events since May by that time and in fact felt better than I had in years.

MRI showed several new lesions from the scan done in 2005 and neuro thought this seemed to confirm MS, although I was told they still weren't 'typical' MS type lesions. Lumbar puncture and evoked potentials were negative, so after being told I was down as 'probably MS' and would stay like that until there was more 'clinical' evidence so that I met the criteria better or it became obvious that I had something else that they were able to clinically diagnose. Then suddenly, at my 6 month review in September said they'd decided that it wasn't MS and frankly they just didn't know what it was, so as I wasn't having any 'significant' episodes and hadn't for a while they put me onto 12 month review instead of 6 and that was that.

I was told I should go back if I had any 'significant' events such as weakness down one side or loss of bowel or bladder control, but the fine motor and or visual issues, parasthesia, word and memory problems I would just have to live with. hmm

I haven't been well for most of this year, with lots of my usual neuro (apparently insignificant) symptoms regularly, plus the exhaustion that comes with it and the development of intentional tremor - which the neuro didn't think was relevant hmm and some other problems with fine motor skills, which dh felt showed up on the neuro exam yesterday, but the doc didn't mention. Didn't have anything significant though until Thursday after last when I had one of my old episodes when shopping with Mum and the dcs, then I had another lesser one when out with my Mum in the week and now this. I didn't contact the neuro though, because they already know I have those symptoms and they said anything new and significant.

I am claustrophobic, so that's why I can't stand the MRI. I coped ok with the first one, but the last one was awful - and longer, as it was head and neck. They don't let you listen to music or anything, the assistant was stroppy and rude and they left me there for ages after the machine stopped before coming and wheeling me out. I had a really strong urge to panic, kick and thrash about and I had nightmares about it for weeks. Very odd really, as I although the first one was horrible, I coped ok with it.

I had 'head gluey stuff' for my evoked potentials, so not looking forward to that with EEG. I have really long hair (not quite waist length, but below shoulder blades) and it's really thick as well. Urgh.

The other thing was the babinski reflex. My left foot definitely tested positive yesterday (positive indicates central nervous system damage) but the AMU doc didn't say anything and said my examination results were ok. The only thing is I have Complex Regional Pain Syndrome in that lower limb, so it could actually be peripheral NS damage rather than CNS damage, which might be why she felt it wasn't significant. confused I think it does need checking out more though.

moosemama Mon 26-Nov-12 10:14:52

Madwoman and TLP. Thank you. I know I can't hide anymore and have promised dh that if I have any more episodes we will drop everything and go there and then (although if I have to wait 6 and a half hours to see a doctor like I did yesterday I will be out of it by the time I'm seen. hmm)

I will grin and bear the MRI, but am seriously dreading it. I nearly cried when they told me I had to have another one, but it sounds like I need to get used to it. To be honest I'm such a control freak that I think I hate the idea of GA or sedation even more. blush

I am feeling okish today, but really sore. I keep finding new bruises I didn't realise I had yesterday and my blooming shoulder is really painful.

Fortunately/unfortunately ds1 started throwing up at 1am, but had stopped by 5am, so I have all 3 dcs off sick, which whilst not ideal has meant no school runs and all of us curled up under duvets. Dd has lost her voice and she and I are on the sofa sharing a duvet and the boys are watching dvds in their own beds. I can tell ds1 is really poorly because he's insisting on Bagpuss and Trumpton. grin

We are going to snuggle up together and watch the second Alvin and Chipmunks and the original Nativity film together this afternoon.

Honestly, we are the house of sickness at the moment!

NoHaudinMaWheest Mon 26-Nov-12 10:51:53

Moose just wanted to say how sorry I am that things are going wrong again.

My only advice is re DS1 and the phone. My Ds although also a technophile has found using the phone difficult and is only really getting to grips with it now at 16. He does find it easier to use a mobile for some reason so might be worth exploring with your ds?

Hope the sickness but clears up soon.

moosemama Mon 26-Nov-12 11:28:58

Thanks NoHaudin.

Unfortunately we have almost no mobile signal in our house, so a mobile isn't really an option. I can receive texts etc if I leave my phone in one or two specific locations and can send texts by waving the phone around in certain spots, but an actual phonecall is impossible.

I am starting to wonder about idiopathic/reactive hypoglycemia. The first episode Thursday before last was when I didn't get chance to eat all morning, then went out and had a coffee and chocolate brownie dessert and icecream with the dcs, then went to the garden centre and collapsed. The Ikea one was when again I didn't get chance to eat, then grabbed some biscuits on the way out and at the weekend I didn't manage breakfast, had a cone of chips at 10.00, then nothing except non-diet tonic water - which of course is major carbs. My blood sugar levels were normal yesterday, despite only having two coffees and until we got home last night.

Reading the info reactive hypoglycemia seems to fit. I used to have an eating disorder as a teenager/young adult (I know it sounds like I do now, but I don't, honest) and would regularly go very strange after eating a big meal. Every sunday lunch I used to start to feel strange at the dinner table and have to go and lie down in the next room to recover. If I lay down and slept for a while I would be ok, but if I tried to carry on I would 'faint'. I have had similar things happen all my adult life, but not often enough to connect the dots and I've generally been a lot better about managing my diet.

Then there's the fact that I was episode free for my entire diet/exercise regime last year. I was having porridge for breakfast, mixed salad with nuts and seeds for lunch and often for tea as well and other really well balanced healthy meals. So my blood sugar levels would have been kept steady by slow release energy foods.

I think I am definitely going to have to raise this. Surely it would be simple to test, just get me not to eat for most of the day and take blood, then give me a couple of sugary drinks or a white carb loaded meal and take more bloods.

In the meantime I am going to try and get back on top of my eating habits, start having porridge every morning again and see if I'm any better. Can't hurt, even if it doesn't turn out to be the answer.

ThoughtBen10WasBadPokemonOMG Mon 26-Nov-12 11:36:38

Oh gosh Moose. I don't post much on here atm but I'm so sorry to hear about all this that is going on with you. The CRPS is enough for anyone to deal with let alone neuro issues and SN to be getting on with.

Apologise if this is out of turn but would one of those alarms that you have round your neck that calls a call centre or programmed number be suitable for you and your children if you were to need help?

cheekkatb Mon 26-Nov-12 11:37:02

I've had both types, usually I get a warning but on occasion out like a light without warning. In fact I've done exactly the same as you in the bathroom. Black and blue next morning. I keeled over last time without warning so eventually went to the docs to go back on meds. Been fine since.

ArthurPewty Mon 26-Nov-12 11:44:28

Message withdrawn at poster's request.

CouthyMowEatingBraiiiiinz Mon 26-Nov-12 11:49:46

It sounds a LOT like my seizures, tbh. I'm going to investigate the hypoglycaemia thing you were on about. I also had an eating disorder as a young teenager (9-14), and even the GP is thinking it might be something to do with my blood sugars - I have a form to go and get fasting blood sugars taken on Wednesday! It's easiest to fast overnight and get the bloods taken in the morning I think.

Hope you are feeling OK right now.

TheLightPassenger Mon 26-Nov-12 11:54:36

Moose - when they diagnose diabetes, they do a glucose tolerance test - which is as you describe, filling someone with a v sugary drink, then seeing how their body responds to it - so it should be straightforward to check that side of things out.

moosemama Mon 26-Nov-12 12:01:18

Hi Ben10 lol at the Pokemon aspect to your new name - I feel your pain!

I don't think I need an alarm or anything. It's only happened once and at the moment there is no reason to believe it will happen again. If it does I guess we will have to think a bit more seriously about getting things organised.

I feel a bit of a fraud actually. I spent the whole day in hospital yesterday begging dh to to and tell them I was going home because I was just taking up a bed space and there must be people who were far more sick than me that needed it. To be fair, I felt much better yesterday than I did even before the seizure. I feel worse today to be honest. I think I'm just physically and emotionally exhausted and a bit battered though really.

Cheekkatb, thank you for sharing your experiences. I just don't know what to think really. The reactive hypoglycemia really seems to fit the pattern, but I'm aware I could be grasping at straws given my other neuro symptoms and MRI results.

Leonie I have been guilty of having the same thoughts in the past, but am kind of regretting it a little now. I was sick of being looked at like it was all in my head, even though they'd told me I have multiple lesions that had increased from one scan to another. Until the distinct episodes started I'd always assumed I had ME. I was dxd with PVFS in my early twenties and was bedridden for a few months, but never followed it up and just managed the symptoms myself.

At my last appointment the neuro actually told me she doesn't believe in ME but that either that or another of the current "fashionable disorders such as Fibro" (her words not mine angry) might be a useful 'label' for me to use to explain my symptoms to other people until a better answer comes along. I was beyond livid both at her dismissing people's very real struggle with those two very real illnesses and by her suggesting I should just make something up until to tell people until such time as I actually do keel over. angry angry angry

moosemama Mon 26-Nov-12 12:04:39

Couthy - another name for it is idiopathic hypoglycemia if you want to do some reading up.

TLP I wondered if a GTT would work. Hopefully they'll think it's at least worth a try.

Unfortunately I think the MRI is going to come first, which is a pita, as I'd really like to see a neuro to talk it all through properly and perhaps try the GTT first. AMU doc said the MRI was necessary because it's been over 12 months since the last one was done.

moosemama Mon 26-Nov-12 12:10:34

Couthy, can I ask? Do you tend to still feel really bruised and achy this long after a seizure. I am sooo sore today, worse than yesterday and I thought I'd be starting to feel better today.

CouthyMowEatingBraiiiiinz Mon 26-Nov-12 13:19:03

Takes me about 3 days to feel 'normal' after a big seizure tbh. And longer for the bruising to fade...

moosemama Mon 26-Nov-12 14:22:25

Thank you - thought I was just being a wimp. blush

I currently have all 3 dcs snuggled up in duvets and pillows on the living room floor with me under mine on the sofa. We are watching the second Alvin and the Chipmunks film and ds1 is finally smiling after the mother of all meltdowns because I wouldn't let him have lunch. He always does this, throws up for hours on end, then begs me to feed him and if I give in, duly throws up again.

ArthurPewty Mon 26-Nov-12 16:56:19

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CouthyMowEatingBraiiiiinz Mon 26-Nov-12 19:39:27

Physical exhaustion definitely does it for me. Which is a bit of a bugger as I have Fibromyalgia too, and obviously get physically exhausted doing normal, everyday tasks! Even going food shopping can be a trigger.

Going to town always triggers a seizure for me, I've only been seven times this whole year. I'm dreading it because I have to schedule in a day to go Christmas shopping AND the next day to recover from the inevitable seizure. I am struggling to find two days together.

Which isn't going to help, as I will end up sleeping off a seizure the following day whether I schedule it in or not...

I also have issues to do with my cycle, with me it usually coincides with the start of AF, that my seizures get worse.

CouthyMowEatingBraiiiiinz Mon 26-Nov-12 19:40:41

I have to be careful not to overdo exercising too. Stopped going to the gym 8 years ago. And have subsequently got an additional 2 stone that I can't shift through diet alone.

ArthurPewty Mon 26-Nov-12 19:54:19

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ArthurPewty Mon 26-Nov-12 19:55:26

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moosemama Mon 26-Nov-12 20:33:26

Leonie, ignore your GP, they are getting bonuses for not referring. Insist on a referral for yourself in the same way you would for your dds.

I know I'm a fine one to talk, but with definitive evidence in the form of previous EEG and MRIs you should have been put under a specialist as soon as you registered over here.

I do know how hard it is. You just get fed up of no-one listening and taking your seriously.

I was kept waiting in AMU for 6 and a half hours yesterday, for most of it there was no doctor on the ward because he was up on his 'favourite' ward instead (I was in the observation bay by the nurse's station, so was privy to the nurses' conversations).

In the end I only got seen when I accidentally lay on the nurse call button and mentioned to her that I was going to have to discharge myself as I have a child with ASD whose whole week was going to be messed up if I couldn't get home in time for him to sleep at our house instead of my parents. I was really polite, in fact I got a bit tearful and explained how worried I was about ds, that I had promised to be back from our weekend away hours ago and that, as the seizures were almost 24 hours before by this point, I knew they would only discharge me anyway, so in terms of the effect it would have on both his and my weeks it wasn't worth me hanging around to be rubber stamped. At that point the registrar who had been sitting at the computer opposite me the whole time suddenly decided she had time to see me. hmm To be fair, she was on her own, as the other one had buggered off with the supervising doc and she was very thorough when she did take a history and examine me - but every single other person, including people that came in after me had been seen and either discharged or moved and she had had time to eat sweets and chat with the nurses and ambulance drivers.

I wouldn't have minded so much if I'd decided to go to A&E and demanded to be seen, but I actually called my OOHGP, who told me to go straight to A&E, I refused and begged them to see me but they were adamant, went to A&E, they assessed me and insisted I was taken to the AMU. I didn't see one doctor between 1.00 pm and 8.10 pm. angry (The nurses were lovely though.)

ArthurPewty Mon 26-Nov-12 20:38:40

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ArthurPewty Mon 26-Nov-12 20:40:56

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moosemama Mon 26-Nov-12 20:50:38

That's what I thought Leonie. It definitely should have happened when you first registered. You should have had a health check at your GP's, they should have taken a thorough history, discussed previous specialist care and treatment and come up with a care plan, including referrals based on that.

You shouldn't have to go in all gun's blazing, but the truth is you will probably have to. They will be of the 'well you've survived this long without a referral' opinion and will be thinking they can palm you off.

Or could you change surgeries at all? Just thinking, a better surgery should do all the health-check and history stuff again and this time you should get the referral whilst they stand aghast at the other clinic's ineptitude.

I am exactly the same, I can do whatever it takes for my ds's - eg me calling the school to complain (again) on Friday when I had just been in floods of tears through fear of doing it, but if it's for me I just can't do it.

Take someone with you for moral support - preferably someone who will be able to prompt you and say things like 'didn't you say X' and 'weren't you going to say about Y' to make sure you actually do it.

I was going to call and ask for an appointment to discuss the whole reactive hypo angle with a GP this afternoon. Promised dh over the phone at lunchtime I'd do it, then talked myself out of it within half an hour of coming off the phone. blush

Thing is my MIL was in denial about her epilepsy for years and I was her worst critic - that blooming karma gets me on the backside every time!

ArthurPewty Mon 26-Nov-12 21:26:56

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ArthurPewty Mon 26-Nov-12 21:27:07

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ArthurPewty Mon 26-Nov-12 21:28:14

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moosemama Mon 26-Nov-12 22:00:07

MIL was having freezing episodes that went on for a few minutes at a time. She was literally like a statue. FIL then told us that she'd had them for years, but they'd been getting longer and she'd refused to go to the GP. She was still driving as well. angry

Then she had one in the middle of a family party, froze for several minutes, just like a statue, mid-sentence and was completely unaware. Dh was with her, gave her a talking to, pointed out how she could kill someone if it happened while she was driving etc and insisted she went to the GP. So she finally agreed to go.

She was referred and put on meds, but refused to accept the dx, said she thought the consultant was an idiot and wouldn't take them. Then completely out of the blue she had a major tonic clonic, was out for a very long time, fitting in the ambulance all the way to hospital - really bad. Poor old FIL - very dependent, has AS and is not at all the adult in the relationship, was terrified.

They gave her different meds and again she refused to take them, but eventually gave in. Then she hated the meds because they made her feel slow and ill, so she stopped them again. Then she had another seizure and was referred, coincidentally to my neuro, who she decided she trusted. She was given new meds and has been seizure free on meds that agree with her for over a year now. In fact I think she is just about to be allowed to drive again.

So, I'm not quite that bad. blush grin

I am exactly the same for talking myself out of booking appointments. I don't have a clue why either. confused

ArthurPewty Mon 26-Nov-12 22:08:23

Message withdrawn at poster's request.

moosemama Mon 26-Nov-12 22:38:25

No, this thread is about advice re epilepsy, which you are just as much in need of as I am. You keep up the dialogue, I know how much it helps to talk these things out and get them straight in your head and I would really like for you to get seen and sorted as much as I want my own issues addressed. smile

I am ok. Still very unsure how I feel about it all at the moment, but hey ho - life goes on I suppose.

I was supposed to start driving lessons back in September, before my episodes returned, then I got the CRPS in my foot so moved the lessons to January and seems now I will have to cancel those. Not sure what that means for getting ds1 to and from secondary school come next September. <sigh>

On a more positive note, nobody has thrown up in my house since 2.00 am this morning - so that's something to celebrate! grin

Off to bed now x

mariammama Mon 26-Nov-12 23:41:20

I think I have epilepsy, these funny turns seem like fits. I asked the dvla can I still drive and they said not really, unless a consultant confirms it's not actually real epilepsy. Sorry dr, please can you send me back to the neurologist wink

mariammama Mon 26-Nov-12 23:42:38

Oh, no referral, great, will you write and tell dvla these definitely aren't. Fits so I can still have my license

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 00:32:25

You can still lose your license for non-specified blackouts though. Just to put a downer on that one. I lost my license 6 months BEFORE I was dxd with epilepsy.

<<Clears throat>>

Brushing aside that last statement, it IS a good idea of Mariamma's to ask your GP to confirm in writing to the DVLA that it is NOT epilepsy and that you are safe to drive.

If he won't write to the DVLA to say you are safe to drive, then you can say that if you are not in his opinion safe to drive, then you want a referral to find out WHY you aren't safe to drive...

I haven't driven since 6 months before my diagnosis, since my first tonic-clonic. I WAS seizure free for 52 weeks a few 6 years back, sent off for my license...and went into Status Epilepticus whilst waiting for my license to be posted out to me.


I had to surrender it the day it came through the post. angry

At that point, I gave up on the notion of ever driving again, as I would have my DC's in the car, and I'd never feel safe again, and would never forgive myself if anything happened to them through me having an unexpected seizure at the wheel.

I still don't have my bus pass - I'm finally getting round to applying for it next week with my Charity lady helping me.

<<Queen of procrastination>>

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 00:42:10

Oh - about driving your DS to Secondary - you CAN get transport paid for due to a parents disability, you just have to find out which way to go about it in your LA.

Some do it if you have a bus pass as the parent but your DC can't use the bus (for whatever reason - their own SN's, not on bus route, bus doesn't reach their school on time etc.).

Others do it as Direct Payments from the Adult Social Care Dept. of your local Social Services.

Yet others do it through the Children with Disabilities team of your local Social Services - especially if your DC has a disability that means that they cannot access the usual school bus or walk to their school, if their parent also has a disability that prevents them from driving.

Number of ways around it, it basically depends on a) Which LA you are under, b) Whether your DC ALSO has a disability that either means they are unable to attend the local school and therefore have further to travel and you would need to drive them there, OR that your DC has a disability that means that they cannot access the usual mode of transport to the local school, like AS meaning the school bus is not useable, and that means that you would have to drive them there.

Either of the option for 'b' are going to mean that he can't get to school at all if you can't drive him AND he needs to be driven, for whatever reason. And therefore the LA will have no CHOICE but to step up!

ArthurPewty Tue 27-Nov-12 10:46:45

Message withdrawn at poster's request.

moosemama Tue 27-Nov-12 10:49:39

I'm still vainly hoping it won't come to that but ...

School is a 20 minute walk away via the 'safe route' through a local housing estate.

Ds can't walk there on his own because he can't be trusted not to step out in front of a car and to get to the 'safe route' he needs to cross two main roads. hmm The only bus would need to be caught from a stop across the main road as well and it isn't a school bus, it's a standard public transport bus.

I really want to be able to take him and pick him up myself to make sure his anxiety levels are kept under control before he gets into school, but have the other two to get to school at the same time as well. Not sure if by then dh might be able to change his hours slightly to do the morning drop off (he's only been in his new job for around 7 weeks) so that would just leave the afternoon. I looked into the other two doing half an hour in after school club so I could walk up and get him first, but it would cost me a whopping £12.00 a day! shock

If he went to the other school we considered he would be guaranteed transport, but it's over an hour's drive across the city and he gets travel sickness, plus he's exhausted enough every day when he gets home, without adding two hours to his school day.

Seems no matter which way round we try to organise things there's always a spanner in the works.

I am trying to trust that something will work out, but feeling decidedly anxious about it all and that's without all the worry about him actually starting secondary school in the first place.

moosemama Tue 27-Nov-12 11:01:55

Well Lougle, if my week so far is anything to go by, nothing much changes even if/when you do end up on the floor.

Dh hasn't even offered/asked to book time off work so I can get a bit of rest and DM went awol yesterday (shopping) is busy today and away tomorrow, so I have been alone with sick dcs, including one extremely melty-down ds1 who spent much of yesterday kicking off, when not whingeing about how unfair it was that he was ill and intermittently screaming that he was going to die because his head hurt so much. hmm

Dh failed to wake me this morning until he was literally out the door and then wondered why I was angry that I had to literally leap out of bed with no chance to wake up properly and come downstairs to supervise the dcs, as they can't be left alone for a second.

Came downstairs to a fight between the boys, lost my temper with them and they both ran off upstairs, upset. sad Then dh and I had a row and dd burst into tears. Eventually he stormed off to work late with nothing resolved and he is out at a user group/forum thing he runs to do with his work role tonight, so I am on my own then as well.

None of the dcs seems well enough to go back to school, in fact they all look like death warmed up and dd still can't speak more than a whisper (think it's laryngitis). I really want them to go back to school tomorrow, but that means three school runs, on crutches with a blooming wrenched shoulder.

Am also worrying about the amount of time they've had off sick so far this year, as I wouldn't put it past the school to use EWO to put the boot in.

We have an advocate coming round tomorrow evening to discuss the whole school mess and help us form a plan, but the place is upside-down with luggage from the weekend and the detrius of having three kids off sick while I'm not firing on all cylinders. Plus the paperwork is in a complete mess, because I have simply not been on top of things so far this school year, so I am going to look incompetent and a slattern all at the same time. blush

Can I start this week over please? Preferably with a better preceding weeknd?hmm

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 11:03:39

I would look up about the ways around transport issues for DC's with SN's when the parent has a disability that stops them from driving - there ARE ways around it. Each LA is slightly different, but I'm dealing with this right now for my Y6 (Possible Aspergers, awaiting appointment for testing) DS1, who is unlikely to go to the local school, but to the far smaller Grammar school right across town, and transport will be a HUGE issue for me.

I've found loads of ways to get the costs covered.

I hope that I can help you both if this does become an issue!

CouthyMowEatingBraiiiiinz Tue 27-Nov-12 11:08:34

God, DS1 is on the verge of the EWO, tbh they should have already been out. Before the October half term, his attendance dropped to 48%!

It's slowly climbing again, but he is very run down - he had antibiotic-resistant streptococcus infection in his throat and couldn't DRINK without painkillers for 6 weeks, AND halfway through that time, he had appendicitis and had his appendix out!

And because of the strep infection, one of his wounds still isn't healed properly, he STILL can't bend over 5 WEEKS after his operation, the wound is still oozing and having to be dressed daily, and yet I'm having to send him into school or the EWO will be out!

Grrrrrrrr! angry

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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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

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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.

moosemama Tue 27-Nov-12 20:44:59

No, it was a perfectly reasonable question. FIL definitely has AS, as does BIL and Dnephew, so it would be reasonable to assume dh might be affected.

He's definitely quirky, but highly social, always liked by everyone he meets and has never struggled socially. He was a teenage girl's dream boyfriend in terms of doing things like remembering things I'd seen in a shop and going back and buying them for me, doing things like delivering himself to me in a box on my 18th and giving me a card and present for every year he hadn't known me to celebrate christmas with, the first christmas we were together - and he rang me every single day we weren't together when he was at uni, including remembering to call and offer support when I had an interview or something that day.

I really miss him actually. sad

EllenJaneisstillnotmyname Tue 27-Nov-12 21:00:51

Oh, love... sad

moosemama Tue 27-Nov-12 21:10:02

Sorry to be such a misery. I need to give myself a good shake.

EllenJaneisstillnotmyname Tue 27-Nov-12 21:35:11

No, you don't. It's been one shit thing after another for you, lately. Trouble is, you have to carry on, somehow. But you are allowed a bit of a cry, and where better to come than here? You are among friends, here, moose, and we do understand, we've all had some of the crap ourselves. You do seem to be getting rather more than your fair share, though. ((((hugs))))

moosemama Tue 27-Nov-12 21:35:36

Thank you. smile thanks

ArthurPewty Tue 27-Nov-12 21:54:06

Message withdrawn at poster's request.

madwomanintheattic Tue 27-Nov-12 21:57:03

Moose, did you call headway? <gentle hug>

magso Tue 27-Nov-12 22:00:27

Oh Moose. (hugs)
I'm OK doing better recently but still 'only' a CFS dx.

madwomanintheattic Tue 27-Nov-12 22:01:30

And did you check out the brain injury thread in health?

You have lots of support here, but sometimes you need a bit of specific soothing, even years after the event. You know I didn't have any counselling for six years after dd2 was born, which was 8 years after dh's head injury...

I tend to look at it a bit like PTSD - for those of us dealing with the aftermath, it can catch up years later, in totally unexpected ways, especially if we are at a low ebb about something else (for me it was my mum being dx with breast cancer).

It just catches you unawares, and is so mixed up with every aspect of your life it's hard to disentangle everything.

Good luck for tomorrow x

madwomanintheattic Tue 27-Nov-12 22:02:14

<and no need to post on the thread, but it might be interesting for you to just read>

ArthurPewty Wed 28-Nov-12 13:53:49

Message withdrawn at poster's request.

moosemama Wed 28-Nov-12 14:22:57


Nope, thing are a whole helluva lot worse.

Dh woke me at 11.30 to tell me the school had called and wanted me to go in to discuss last week's complaints when dd went to nursery. Obviously they thought I would be on my own and no time to get a PP rep to come with me. angry Fortunately dh was here, so we both went, even though I really wasn't up to it.

Just before we left for the meeting, the post arrived and the shit has well and truly hit the fan with ds's secondary placement. (Read the last couple of posts on this thread.

Thank God we have this advocate coming round tonight and it was beyond lucky that dh decided to buck up and book today off, because I'd be a complete mess if he hadn't.

ArthurPewty Wed 28-Nov-12 16:29:30

Message withdrawn at poster's request.

ArthurPewty Wed 28-Nov-12 16:40:42

Message withdrawn at poster's request.

moosemama Wed 28-Nov-12 17:03:56

Oh Leonie, so sorry about your cat. sad

We're gathering advice from all over the shop at the moment deciding our next move.

I would really love to name the indie(although still not sure he'd cope with the travelling) and in theory the academies letter gives us the evidence we need to do it, but ds really can't cope with the thought of going anywhere other than the local school with all his friends and if we do name the indie it's going to take A LOT of very careful handling.

Watched the videos on their homepage today and sobbed and sobbed.

Why can't there be a school like that local to us - it's just not bloody fair. There is not one school in the whole county that is suited to HFASD or AS. Not one scrap of suitable provision - it's beyond a disgrace! angry

ArthurPewty Wed 28-Nov-12 17:36:15

Message withdrawn at poster's request.

ArthurPewty Sat 01-Dec-12 19:39:15

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ArthurPewty Sat 01-Dec-12 20:00:08

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moosemama Sat 01-Dec-12 20:13:43

As you know, I know very little about all this, but from what I've read this week that definitely sounds seizurey to me Leonie. sad

You are going to have to demand your GP to refers you, it's frankly outrageous that they haven't done it already with your history.

ArthurPewty Sat 01-Dec-12 20:15:41

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ArthurPewty Sat 01-Dec-12 20:17:02

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CouthyMowEatingBraiiiiinz Sat 01-Dec-12 22:17:01

Um. Right, Leonie.

You need to see a Neuro. don't wish to be the bearer of bad news but this sounds very like a partial seizure. You can be 'aware but not' if you know what I mean.

The blinking where you know you are doing it, but can't stop it is a big sign. sad

I REALLY think you need to see a Neurologist.

Odd question alert - when you felt sleepy, like you couldn't keep your eyes open, did you get double or blurry vision? If so, then your first port of call on Monday morning should be the GP to INSIST on a referral to the Neurologist of your choice through choose and book.

I don't know where in the country you are, but if you are in the SE anywhere, I really rate the Neuro's at Queen's Hospital in Romford.

CouthyMowEatingBraiiiiinz Sat 01-Dec-12 22:24:23

Sorry I've not been here till tonight, have had a busy week!

CouthyMowEatingBraiiiiinz Sat 01-Dec-12 22:26:07

Did you hear a whooshing sound, or clicks? I often find that those sounds, plus an 'odd' feeling in the pit of my stomach (almost like a dread feeling, like I'm dreading what is to come) precede a partial seizure.

CouthyMowEatingBraiiiiinz Sat 01-Dec-12 22:27:10

Apparently, according to other people that have seen me have partial seizures, I often bite my lips too. Never have any knowledge of that though.

CouthyMowEatingBraiiiiinz Sat 01-Dec-12 22:28:03

Some people also smell a particular smell before they have a partial seizure too. A frequent one is the smell of burning, but it can be anything.

CouthyMowEatingBraiiiiinz Sat 01-Dec-12 22:29:20

And if you have got ANY odd neurological symptoms, one of the first lifestyle changes you should make is to ensure that you get enough sleep.

<<wags finger at Leonie.>>

<<Wags finger at self for not taking own advice.>>

CouthyMowEatingBraiiiiinz Sat 01-Dec-12 22:30:55

Disclaimer here though - I'm NOT a Neurologist, so I can only tell you what I have learnt in the 9 years since my own epilepsy diagnosis, and what I have learnt from other people that I know with epilepsy.

ArthurPewty Sun 02-Dec-12 08:22:46

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ArthurPewty Sun 02-Dec-12 08:43:12

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CouthyMowEatingBraiiiiinz Sun 02-Dec-12 10:05:06

That's ok, Leonie - I know exactly what you mean. Pain from RA, extra tiredness from fibromyalgia, hyperactive/ADHD toddler, probably with Autism too, two older DC's on the spectrum and having to do nighttime nebs and inhalers for DS2, sleep is hard won in this house too.

That's why I said I should take my own advice!!grin

ArthurPewty Sun 02-Dec-12 10:29:26

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werewolvesdidit Sun 02-Dec-12 10:34:38

It took us 4 bloody years to get a diagnosis of epilepsy for DS1. That was 4 years of GPs, consultants etc. I knew they were seizures but they were short and only nocturnal. Finally he had a full blown tonic clonic in the middle of a snowy road on Christmas Eve where I had to flag down strangers to call 999 and THEN they started to take us seriously sad sad sad It still makes me cry when I think about it. Anyway, on a more positive note. He is on keppra with no side effects (that we know of) and has been seizure free for over 2 years. He is a happy wee boy.

ArthurPewty Sun 02-Dec-12 11:00:30

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werewolvesdidit Sun 02-Dec-12 12:23:03

That's the weird thing about epilepsy. It seems to come and go or returns with new seizures. They are putting a lot of pressure on us to take DS off his meds and we are really pissed off about it. He is doing really well on keppra and I have no desire to put any of us through the shit that we went through for years watching him have hundreds of seizures. They just cxare about the NICE guidelines and have no understanding of the stress we wnt through as a family. sad

ArthurPewty Sun 02-Dec-12 12:58:04

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ArthurPewty Sun 02-Dec-12 16:08:42

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moosemama Sun 02-Dec-12 18:07:30

Sounds just like I was for a couple of days after mine Leonie.

Emergency appointment tomorrow morning for you I think?

ArthurPewty Sun 02-Dec-12 18:17:37

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moosemama Sun 02-Dec-12 18:27:45

Then this time, set your alarm instead of your resolve. wink

<I am exactly the same, but our surgery does triage appointments so can usually manage to get squeezed in>

ArthurPewty Sun 02-Dec-12 19:06:38

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ArthurPewty Mon 03-Dec-12 09:47:47

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moosemama Mon 03-Dec-12 11:51:35

Is there anyone who could make the call for you at 8.00 Leonie? It doesn't have to be you that makes it, as long as they know your availability for appointments.

ArthurPewty Mon 03-Dec-12 11:54:45

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moosemama Mon 03-Dec-12 14:19:42

Don't think that Leonie. The cosmic hints arethe episodes you've been having and if you are looking at it from a universal perspective, you could see it as a life lesson that you need to fight for yourself as hard as you would for your dcs - no matter how hard the challenge or what the barriers.

If you need to, remind yourself that fighting for your own health is actually fighting for your dcs indirectly, they need you to be fit and healthy if you are going to be able to keep up your fight for them, as much as you need it for yourself.

Right - make a plan. Set your mobile phone alarm for 7.55 tomorrow morning and start dialling (and if necessary re-dialling) at a minute to 8.00 so you are first to get through (I did this with IPSEA and it worked a treat). It might mean hanging on a few minutes and then running to school, but it will be worth it.

If you really can't make it happen that way, then next time you have an episode like you had the other day, do what I did and present yourself to A&E and tell them you've had a seizure and are currently dxd but unmedicated and not under medical supervision. Sometimes it's the only way to be heard.

ArthurPewty Mon 03-Dec-12 16:18:00

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moosemama Mon 03-Dec-12 16:35:55

I think the A&E option is the only way many people get to be heard for a wide range of reasons these days, but even that relies on you getting a decent doctor on duty when you get there.

We are quite lucky with our GPs, as the triage appointment system works quite well. You ring and they have one GP on triage duty all day. They call you back within the hour, discuss the problem with you and usually invite you in for an appointment again within the hour - so max 2 hours from calling to being seen. Before they set up the service our surgery was like yours, you literally had to book your illness in weeks in advance. My Mum's surgery is the same and she's considering switching to mine as a result.

I wish I could drive - I'd come and give you a lift to A&E myself. sad

ArthurPewty Mon 03-Dec-12 16:56:25

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moosemama Mon 03-Dec-12 17:00:54

Lordy you shouldn't have to do all that, get a taxi it'll be the best few quid you've ever invested.

ArthurPewty Mon 03-Dec-12 17:08:59

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ArthurPewty Mon 03-Dec-12 17:09:38

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moosemama Mon 03-Dec-12 17:13:28

I love walking as well, like you it's helps mitigate my sweet tooth (although not at the moment, thanks to these blooming crutches).

I was thinking you just need to get this done as quickly and hassle free as possible, especially with having the dd's looked after, because you know you are going to be hanging around at the hospital for hours on end, without the additional time waiting for trains and walking. Not to mention, you don't want to end up seizing in the middle of a crowded train carriage.

ArthurPewty Mon 03-Dec-12 17:16:34

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moosemama Mon 03-Dec-12 17:39:52

Sounds like a plan.

I can go weeks with no sugar, then find I crave it really badly, particularly in the evenings after the dcs go to bed. The only think I can think is that I crave it when my energy stores are really low and my body is trying for a quick fix. I do find if I eat a really big bowl of porridge in the morning, go wholegrain or big salad with nuts etc for lunch I tend not to get the cravings though.

Unfortunately, my diet has been truly abysmal since I hurt my foot and I know it's been purely emotional eating, which of course not getting any better with all the school stress.

I scoffed half a trifle this afternoon. blush I was fine until I dropped dd at nursery, then when I got home and everywhere was quiet, by brain went into stress overdrive about ds1, school and secondary placement etc and I think I ate the trifle purely to distract myself. Sadly, eating a piece of fruit just doesn't have the same effect. blush

Still I have salad for tea so hopefully that will make up for my mid-afternoon sins. grin

ArthurPewty Mon 03-Dec-12 18:21:58

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Badvocsanta Mon 03-Dec-12 18:25:13

A and e leonie.
<stern look>

mariammama Mon 03-Dec-12 22:57:59

Fax a letter through marked FAO duty doctor: urgent. Explain you really need a pre-booked review appointment SOS, as you had a seizure. Call the practice manager the next day if no callback and keep calling the PM till they make you a dr appt. it will happen, if only to get you stop bugging the boss wink

ArthurPewty Tue 04-Dec-12 10:36:42

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moosemama Tue 04-Dec-12 11:03:41

Great news, let us know how it goes - and being nervous isn't stupid, I am exactly the same with doctors ... well with anyone really, including SENCOs and LEA officers. blush

ArthurPewty Tue 04-Dec-12 13:11:30

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moosemama Tue 04-Dec-12 13:51:19

At least you have a firm appointment now.

Hold on Leonie, you're almost there. Just imagine all of us standing behind you when you sock it to her. brew

ArthurPewty Tue 04-Dec-12 16:30:39

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moosemama Tue 04-Dec-12 16:50:19

Can you take someone with you to the appointment?

Dh sometimes comes with me. He's no help in terms of what needs saying, but it helps just to have someone else there that's on my side.

ArthurPewty Tue 04-Dec-12 16:57:23

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mariammama Tue 04-Dec-12 19:39:00

You can agree to disagree with the GP and still get the referral. If she was right and your funny turns were some sort of weird (but harmless) pseudo-seizure, you'd still need a neurologist to confirm it. Some hospitals seem to EEG/MRI/other fancy tests on anyone and everyone who crosses their threshold grin.

mariammama Tue 04-Dec-12 19:41:46

Beauty of that route is that if she does think you're losing your mind / anxious you aren't forced into the impossible position of having to prove her wrong to acces a second opinion about the odd episodes.

ArthurPewty Tue 04-Dec-12 21:05:08

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ArthurPewty Tue 04-Dec-12 21:35:58

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ArthurPewty Tue 04-Dec-12 21:50:51

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mariammama Tue 04-Dec-12 21:56:13

It's a 10min slot. She might talk for half of it. Theres just no way you can share all your knowledge about this problem. Nor prove sanity, that takes much longer wink. If you get a decent herring it'll be easy, and you might well do. Otherwise I would treat it like an important meeting about one of the dc. Define the preferred outcome, select a few key (killer) points to hammer home.

Make very brief notes which just jog your memory and practice like you would for a presentation, or perhaps a SEN tribunal wink

mariammama Tue 04-Dec-12 21:57:12

Hearing blush. Though if you freeze, remembering MNSN herrings might just work grin

moosemama Tue 04-Dec-12 22:24:26

Hi Leonie,

I am doing ok. In fact I think I have had far less general neuro symptoms since the seizures. A bit like there was a kind of building of electrical charge and then it all got dispersed in one big episode - if that makes any sense at all. Still ridiculously tired though and sleeping heavily, which is not like me at all, as I am usually the world's lightest sleeper.

I got an EEG appointment through for next Monday, but had to rearrange for the week after, as it was impossible to get to with three school runs a day, being over at City hospital. So now it's going to be on the 17th, squished between dropping dd off at nursery at 12.15 and racing back to get all three dcs at 3.15.

I still have a couple of bruises. The one on my eye socket has gone, but I discovered a nasty one a couple of days after the seizure - on the inside of my upper arm of all places. It took me a while to work out how the hell it got there, until I realised it was the exact imprint of my fist, so I must have fallen with my hand trapped between my body the opposite arm. That one is now a nice shade of brown and yellow, but was really nasty looking for a while. Oh, and I still have a lovely black one where they screwed up the cannula for blood letting in hospital.

All the problems with ds1 are serving as a huge distraction at the moment. Things seem to keep getting worse on a daily basis, so I haven't had much time to brood. Just had him in floods of tears for two hours saying he hates his autism and wishes he'd never been dxd. I tried so hard to explain that the problems he's having socially at school would still be happening without the dx, he just wouldn't know why and that would make it even harder - but he wasn't having any of it.

On the plus side, I managed to talk to him, in a round about sort of way about the indie school and he wants to visit it, although only as a fall-back position if he doesn't get a place at the local academy. (I told him no-one has a place set in stone at any secondary yet and he shouldn't get his heart set on it.)

ArthurPewty Tue 04-Dec-12 22:27:08

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ArthurPewty Tue 04-Dec-12 22:29:14

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CouthyMowEatingBraiiiiinz Tue 04-Dec-12 22:35:30

Sorry I vanished for a few days, had no Internet. I'm glad you have an appointment now, Leonie.

The next day I'm absolutely useless. I drift off to sleep, can't remember what I'm in a shop for, utterly exhausted, it's like a tiredness that comes from the centre of your bones, it's not like 'normal' tiredness.

ArthurPewty Tue 04-Dec-12 22:59:05

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moosemama Tue 04-Dec-12 23:07:16

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. sad

ArthurPewty Wed 05-Dec-12 16:14:18

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moosemama Thu 06-Dec-12 11:15:14

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. sad 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! shock

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

ArthurPewty Thu 06-Dec-12 12:08:40

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ArthurPewty Thu 06-Dec-12 12:08:49

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ArthurPewty Thu 06-Dec-12 14:42:23

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moosemama Thu 06-Dec-12 16:22:39

Well done Leonie!

I am so relieved you are finally being taken seriously.

ArthurPewty Thu 06-Dec-12 16:28:15

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moosemama Thu 06-Dec-12 17:06:41

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. sad)

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. angry 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. angry

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. hmm

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. hmm 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. hmm)

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. <sigh>

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

ArthurPewty Thu 06-Dec-12 17:29:33

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Badvocsanta Thu 06-Dec-12 18:19:27

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 sad glad your ds was happy they apologised.

moosemama Thu 06-Dec-12 19:52:05

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. sad

CouthyMowEatingBraiiiiinz Thu 06-Dec-12 20:32:43

sad for your DD, hope she is ok.

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

ArthurPewty Thu 06-Dec-12 21:20:05

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moosemama Thu 06-Dec-12 21:32:14

OOH GP useless.

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

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! shock

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! hmm angry

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

ArthurPewty Thu 06-Dec-12 22:02:14

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moosemama Thu 06-Dec-12 22:34:44

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. sad

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.

Badvocsanta Fri 07-Dec-12 07:17:52

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 sad

ArthurPewty Fri 07-Dec-12 07:32:12

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Badvocsanta Fri 07-Dec-12 07:37:29

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 sad
I am still concerned its whooping cough tbh but the gp was spectacularly unhelpful "well, its a possibility" :$

ArthurPewty Mon 10-Dec-12 17:29:04

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Badvocsanta Mon 10-Dec-12 17:37:59

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

ArthurPewty Mon 10-Dec-12 18:06:03

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CouthyMowEatingBraiiiiinz Mon 10-Dec-12 18:10:25

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.

ArthurPewty Mon 10-Dec-12 18:12:38

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ArthurPewty Mon 10-Dec-12 18:14:06

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ArthurPewty Mon 10-Dec-12 18:16:58

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CouthyMowEatingBraiiiiinz Mon 10-Dec-12 18:42:39

Include it. It can be a sign of nocturnal seizures.

ArthurPewty Mon 10-Dec-12 18:47:36

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CouthyMowEatingBraiiiiinz Mon 10-Dec-12 18:51:37

There is a high chance that even if you are on a lower dose of clona-whatsit (useless with medicine names, but I know it is used for epilepsy) than they would usually give for seizures, that it might be helping to keep your bigger seizures 'in check'.

I hate this time of year, I always have far more seizures in November/December time because of sheer busyness due to school things and consultants trying to fit in 1001 appointments before Christmas etc, but when I have to stop, I have to stop.

I will stop anyway either way, because if I don't stop and rest, I'll have a bigger seizure and be out of action for longer than if I had just rested in the first place!

It's a massive life adjustment, and it takes a lot of getting used to, but it is the one thing I have found that helps.

I sometimes send their Dad's to school plays at this time of year, if I am getting seizure warnings.

This year, for the first time, both my DS's are doing the same Carol concert, which means I only have one to attend. I used to have 2/3!

I feel like I haven't stopped for 6 weeks already, because DS2's birthday was right at the end of November.

I'm having to build rest days into my week now, on Thursday DS3 is going to my friend's house during the day while the others are at school, so that I can sleep.

Then next week, my ex is off on Tuesday & Thursday. Tuesday I will wrap presents and Thursday I will sleep!

I have HAD to start doing this to try to rest at some point each week.

CouthyMowEatingBraiiiiinz Mon 10-Dec-12 18:53:07

And who gives a stuff if they think you are neurotic by having a list of symptoms? It's to help YOU to remember everything!

madwomanintheattic Mon 10-Dec-12 18:58:58

Has anyone seen moose about over the weekend?? Am a wee bitty fretty about her dd....

ArthurPewty Mon 10-Dec-12 19:06:26

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ArthurPewty Mon 10-Dec-12 19:06:35

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ArthurPewty Mon 10-Dec-12 19:06:56

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CouthyMowEatingBraiiiiinz Mon 10-Dec-12 19:12:27

I have hardly been on MN this week tbh.

I know what you mean about the pills. I unfortunately HAVE gained two stone since going back on them in February. In fact, I gained the two stone within 8 weeks of going back on them. angry

I was off them for about 6 months before I fell pregnant, while I was pregnant and while I was bf, but as soon as my periods restarted, the seizures came back.

I'd still rather be two stone too heavy than have the raging stupid though, I know exactly what you mean! Epilim was awful for that, I think I lost 50 IQ points overnight when I started taking them, and regained them within a week of finally swapping to Gabapentin!

CouthyMowEatingBraiiiiinz Mon 10-Dec-12 19:16:45

The back teeth too! I hadn't had a filling until they put me on Tegretol. 3 months later my back teeth were shot to bits!

And then there's the Topamax that left me with no peripheral vision, permenantly, AND sent me insane - gave me symptoms of bipolar that went as soon as it was out of my system...

Epilepsy pills are horrible, the only one that I cope with is Gabapentin, in mahoosive doses, but I have to put up with getting fat!

ArthurPewty Mon 10-Dec-12 19:22:04

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moosemama Mon 10-Dec-12 19:48:39

Madwoman so sorry to worry you. All is OK in the house of Moose, just manic with pre-Christmas ridiculousness and decorating.

Dd continued spiking a 40 degree temp every night until last night, but was bizarrely fine during the daytime and her breathing has also been fine in between temperatures, so I think it was her heart racing that was making it sound odd on the first night. She seems to be coming down with yet another cold today and I have no clue if that's related or something new. hmm

Dh, myself and my parents threw everything we could at decorating dd's bedroom over the weekend (she's 4 in January and still in a cotbed in our room. blush It meant dh and I sleeping in the living room, while dd had a campbed in the boys' room so that we could shift all the stuff from her room into ours temporarily. Bought the last few bits from Dunelm this afternoon (over your way actually Leonie smile) and just need to paint her bed and put it all together now.

I am completely knackered now though and can't stand on my bad foot at all, so tomorrow is going to be a rest day - calm before the storm before we visit the indie school in the morning and have the mega LEA/Inclusion/EP/SENCO/HT/Legal Advocate meeting at the school in the afternoon on Wednesday.

After all that unpleasantness though we have dd's first nativity on Thursday, so at least I have something to look forward to.

Found out today that my boys have voted me in for baking and decorating christmas cakes for their school parties next week. Apparently all their friends asked them to put me down for cakes because they love my baking, which is lovely, but I really could do without it. I think I have shot myself in the foot by setting the bar too high on previous years - I just don't have the strength (or hand stability) for cake decorating these days.

On a more cheerful note, I had two lovely MN Secret Santa deliveries over the weekend and was really lovely and gave me a real lift. smile

All this talk of horrible drug side-effects is giving me the wobbles. I have been on Topomax in the past and like Couthy, I was on another planet while I was on them - in fact very similar symptoms to one of my bad neuro episodes, even on the lowest dose. The only plus-side was the weightloss. I seriously don't need anything that's going to make me gain weight. I have put almost two stone back on this year, after losing four last year and I'm really low about the way I look at the moment. My plan is to start logging my intake on My Fitness Pal and starting to build up my exercise in January.

madwomanintheattic Mon 10-Dec-12 20:03:55

Oh, bless you. Glad it was just busy! (I know we've both been through 'chest is fine' stuff before, lol, followed by disaster)

How exciting for dd!

Will see you on the nt thread in Jan - the New One. (You can start it ;-) )

moosemama Mon 10-Dec-12 20:10:39

Oh no! That means I have to think of a new title! I will try and make it something easily identifiable.

Have a good Christmas if I don't see you around before. smile

ArthurPewty Mon 10-Dec-12 20:24:43

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CouthyMowEatingBraiiiiinz Mon 10-Dec-12 20:35:29

I'm at <<Cough cough 12 stone 2 cough cough>>

I was two stone lighter and had clothes that fitted me in February...

CouthyMowEatingBraiiiiinz Mon 10-Dec-12 20:36:44

GP wants to raise my dose of Gaba again from 900mg/day to 1200mg per day, but I'm stalking as I don't want to gain any more weight!

CouthyMowEatingBraiiiiinz Mon 10-Dec-12 20:37:47

Stalking?! I'm not a stalky weirdo, honest! Just and average weirdo...grin

That was meant to say stalling.

I give up. Autocorrect hates me.

CouthyMowEatingBraiiiiinz Mon 10-Dec-12 20:40:14

An. Not and. See, Autocorrect does have it in for me.

I'm getting early seizure warnings tonight - I keep mispronouncing words and sounding like a video on rewind. Or a twat. Either is possible! grin

I think a hot water bottle and an early night will be in order for me tonight! Busy day tomorrow. Will just have to hope DS3 is compliant enough to go to sleep at a reasonable time tonight.

moosemama Mon 10-Dec-12 20:44:53

I thought it might be Leonie, I thought of you while I was there - we could have met up for a coffee! grin

This time last year I was 10 stone 12 ish and heading downward from a size 12 towards a 10 after dieting and shredding my backside off - literally. I started out at just under 15 stone in June. It was blooming hard work, but I enjoyed it and was so proud of the results.

I had a lumbar puncture the day before New Years eve which laid me out for the next 10 days with back pain and the lovely LP headaches and precipitated a horrible relapse. Fought my way back into exercise until the end of March, when I got to my lowest weight since my early twenties (10 9ish) but really couldn't hack it and pretty much gave in at that point and it's been downhill (and up-scales) ever since. sad

I am now over 12 stone and don't have any muscles left. My knee boots won't zip up and I look like the Michelin man in my warm coat. My lovely size 12 skinny jeans that I was so proud of at the end of last year are now horribly tight and today I tried on my size 14 smart trousers ready for my meeting on Wednesday and they look awful - far too tight around the hips and thighs. blush sad

Couthy, I didn't know Gabapentin could cause weightgain. It's what was mooted to me for my CRPS and was also mentioned when they were going the MS route with my neuro symptoms.

cheekkatb Mon 10-Dec-12 20:48:34

Interesting to read about side effects to the various effects of anticonvulsant drugs. Tegretol made me away with the fairies. I gained a lot of weight on sodium valproate and it didn't control the seizures. I came off meds to have children. A decade later, seizure frequency increased so was put on lamotrigine. Seizures stopped, more weight gain and trouble with sores in the mouth and gum problems. Also find words jumbled up a lot when I speak.

ArthurPewty Mon 10-Dec-12 21:02:00

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CouthyMowEatingBraiiiiinz Mon 10-Dec-12 23:48:25

I bloody wish, Leonie. DS3 has only just nodded off, I've got to wash the bottles and do the bins before I go to bed.

They claim Gabapentin doesn't do that, make you gain weight. Bollocks if you ask me.

Was on them from 2005-2009, put on 2 stone in two months after starting them, list it without changing anything else within 2 months of coming off them.

Kept the weight off without doing any extra exercise, changing my diet, or anything really.

I was back to that weight within 9 months of DS3's birth.

Went back on them in Feb this year, was 2 stone heavier by April. hmm

Seems conclusive to me - I actually weighed less at 9 months pregnant with DS3 whilst NOT taking them than I do now, 22 months later, after just 10 months on them. hmm again.

But they don't cause you to gain weight...

ArthurPewty Tue 11-Dec-12 10:56:17

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CouthyMowEatingBraiiiiinz Tue 11-Dec-12 13:19:55

I would push for Keppra, Topamax has soooo many side effects. Nasty stuff IMO.

Keppra is what they are looking at for me as an adjunct.

ArthurPewty Tue 11-Dec-12 16:08:49

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desertgirl Tue 11-Dec-12 16:49:37

oh, interesting re all the side effects, I have been really lucky with lamotrigine, doesn't seem to have any adverse effects (or I just haven't noticed them) - was originally on valproates, felt slightly nauseous a lot of the time, put on weight, hair was falling out, revolting things.

the lamotrigine is quite a low dose which presumably helps, but it does show you don't have to stress about side effects unless you actually get them, not everyone does.

anyway good luck everyone with getting the medication sorted

moosemama Tue 11-Dec-12 16:53:46

Leonie, it wasn't just the weightloss with me though - and even that was caused by taste impairment and loss of appetite, which wasn't pleasant either.

I was severely cognitively impaired on Topomax, just couldn't function, was unable to speak/recall words, couldn't write or concentrate on anything - basically just zombied - even on the lowest dose.

ArthurPewty Tue 11-Dec-12 16:58:20

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moosemama Tue 11-Dec-12 17:02:52

I thought I wouldn't mind either, but it was honestly awful - and I don't drink fizzy pop. grin

That said, I will admit to being quietly pleased about the weightloss, even though it wasn't fun while it was happening. wink

ArthurPewty Tue 11-Dec-12 18:52:06

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CouthyMowEatingBraiiiiinz Tue 11-Dec-12 18:54:55

It was the MH issues Topamax caused for me that made it bad, and permanently losing your peripheral vision isn't so great either!

moosemama Tue 11-Dec-12 19:03:48

shock Purple nipples! confused


ArthurPewty Tue 11-Dec-12 19:39:42

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moosemama Tue 11-Dec-12 19:54:40

Ah, now I understand.

We have Reynauds in the family, my mum, sister and niece all suffer from it. My niece has it so badly that her hands and feet go black when it's really cold. I've never asked about her nipples though!

ArthurPewty Tue 11-Dec-12 20:17:48

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moosemama Tue 11-Dec-12 20:28:35

Then you may be right, Topomax might be the answer for you. It certainly worked on mine.

I went from several migraines a week, some lasting several days at a time and with no pattern or clear triggers to only having had a handful since my Topiramate treatment back in 2006.

I would definitely go through it again if I knew it was only going to be short term and would get rid of my migraines.

ArthurPewty Tue 11-Dec-12 21:05:53

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moosemama Tue 11-Dec-12 21:21:01

I didn't realise you had migraines as well, that's why I was thinking you might want to avoid the Topomax. It all makes sense now - sorry, my brain is on a go slow today. blush

I am visiting the indie school tomorrow morning - so will report back ... and then we have the mega meeting to end all meetings at the school in the afternoon.

I realised on Monday that I don't have a thing to wear to either, having gained so much weight. So I ordered some new trousers and shoes from Next, knowing they would be here today on standard next day delivery. Only they're not ... the courier has screwed up and only delivered two out of the three parcels and guess which one the trousers were in? Been given the run around and kept waiting on the phone to them twice and they still haven't managed to sort it out, so now I am left stressed - and trouserless.

I honestly don't have anything suitable and I really need wanted to be smart to help me feel in control.

Looks like I will have to wear my black jeans, but I will spend the day feeling scruffy and that's not how I wanted to go into things tomorrow.

Mum is bringing me a beautiful pair of East wide leg trousers when she comes to have dd in the morning. They were mine before I lost the weight and I'd never had the chance to wear them, they are gorgeous, but sods law would have it that I reckon they're still going to be too big and they don't have belt loops. <<ridiculously stressing over silly things that really shouldn't matter>>

ArthurPewty Tue 11-Dec-12 21:22:53

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moosemama Tue 11-Dec-12 21:31:19

The thing is though - if you're posh you can get away with being a bit scruffy, but if you're not you can't fake it, so have to make do with being smart - iyswim.

I wonder if that's similar to my dx of complex migraine then?

Did anyone suggest to you that your brain lesion could be down to migraine damage? That's what they always seem to use as their fallback position with me.

Forgot to say. I had a call from a lovely nurse at Heartlands about an hour and a half ago to book my MRI. It's the first week in January and she thinks it will be the open scanner - so no claustrophobia worries! Thank *!"/ for that! grin

ArthurPewty Tue 11-Dec-12 21:35:35

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moosemama Tue 11-Dec-12 21:45:01


Just googled migraine a bit and came across two types of migraine that would explain my neuro symptoms. Hemiplegic and Basilar. Why on earth hasn't the neuro mentioned them? They both fit the types of attack I was having at the start of last year.

She does keep telling me to get straight in touch if I develop weakness down one side of my body - so it seems that she is waiting for me to have a full on hemi attack like the worst one I had last year.

I wonder if she was just waiting for that to confirm her suspicions and dx? This latest development of seizures is going to throw the cat among the pigeons if she was.

mariammama Tue 11-Dec-12 21:49:07

Ludicrously technical article and easier UK one.

Interesting eye stuff which looks plausible but doesn't seem widely accepted.

moosemama Tue 11-Dec-12 21:52:51

I know the brain is still very much the great scientific unknown, but it never ceases to amaze me how little they seem to be able to tell, even from a detailed mri.

I was told that my first mri showed evidence of recent encephalopathy, but when I mentioned I'd had serious encephalopathy as a toddler in my medical history, they then attributed it to that. confused

I had recently had what I thought was a particularly bad migraine a few weeks before the mri and on checking out the symptoms it did actually seem like I probably had encephalitis then (bedridden for a week and totally off my head, confused, unable to speak etc).

At one appointment they seem to panic and say there are quite a few lesions that are MS in location but vascular in type - hence all the MRIs, LPs and other tests - then all of a sudden they have changed their minds and decided not to worry about the lesions as they are probably down to my old migraines anyway - either that or my age (er ... I was 35 when that MRI was taken and there are more lesions since then, despite me no longer having migraines hmm). confused

Basically Leonie you and me and Couthy are just medical mysteries. Far to complex for them to understand - in many, many ways! wink grin

ArthurPewty Tue 11-Dec-12 22:01:51

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2old2beamum Tue 11-Dec-12 22:15:27

Have scanned this thread and have wondered if any of you with epilepsy could help me with our DS.

He is 32 Down Syndrome deaf and partially sighted. He developed epilepsy at 18yrs.
He has a dx of complex partial lobe epilepsy. This has been difficult to control but is now taking 1)Sodium valporate
He still has 3-4 siezures a week fortunately only 3-4 mins although post icteral period lasts about 10 mins bizarre but not aggressive PHEW but is very sleepy after rearranging the furniture
would like to know how it affects articulate peeps.

ArthurPewty Tue 11-Dec-12 22:17:53

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moosemama Tue 11-Dec-12 23:44:41

2old, sorry I can't help much as (as far as I am aware) I only had my first seizures a couple of weeks ago - hence this thread.

Couthy is the woman to ask.

Just spent the past hour getting all our papers ready for the meeting tomorrow.

Off to bed now - but probably not to sleep. hmm

CouthyMowEatingBraiiiiinz Wed 12-Dec-12 02:19:48

I'm not particularly articulate tbh! grin

It really depends which type of seizure I have as to how I feel afterwards, and how long the after-effects last for.

My absence seizures are very brief, they only last 30-40 seconds, and only very rarely longer than 2 minutes. I feel ok after unless I have had a lot in one day, when I just feel the bone-crushing tiredness.

My myoclonic seizures I don't get that sane tiredness from, but I am really irritable and short-tempered while they are happening.

My complex partials knock me sideways, I have to have at least 2-3 hours sleep when I have come round. I feel dazed, confused, just, well, odd. The best one I had was in my bank, and they called an ambulance (God I hate that, hospital's bloody useless, puts me in a bed with no sides when I'm at risk of further seizures and leaves me there for 4+ hours...). Paramedic asked me where I lived. The only answer I could dredge from my broken brain was "Home"! grin

The best way I can describe the feeling I have after one of my complex partials is like I am trying to roll a huge boulder uphill on Mount Everest whilst wading through treacle...and that's just sitting up!

Nothing seems to be in the right 'drawer' in my mental filing cabinet, it's like someone has gone in, thrown all the papers up in the air, and in trying to catch them and sift through them just to find the word for the thing that changes the channel on the box thing in the corner...

Nothing makes sense, and I have to sleep so that the elves in my head can do the admin and put the papers back in alphabetical order!

(I know, I sound totally weird...)

Oh, btw - certain types of migraine were reclassified as a type of seizure a few years ago, but blowed if I can remember which type/s of migraine that is!

CouthyMowEatingBraiiiiinz Wed 12-Dec-12 02:27:32

And one of the more permanent side effects of epilepsy (though I believe it's the meds because when I was off them for a couple of years it was far better) is the bloody memory problems.

It's like my brain has been replaced by Swiss cheese.

Thing is, it's happened on every epilepsy med I've been on.

Even Lamotrigine, despite the fact that Lamotrigine didn't control my seizures AT ALL.

Before I started taking anti-convulsants, I actually had a proper photographic memory. Now I just have sawdust where the 'remembering' part of my brain should be!

My memory improved a lot when I had a couple of years off the tablets, but it was nothing like it had been. And just 10 months after starting to take them again, my memory is shot to bits again.

I'd be lucky if I could tell you what I ate for dinner tonight, let alone where I need to be and with who tomorrow!

And half the time even normal, everyday speech words elude me. Which means I then get frustrated at myself, because I KNOW that I know the word, but I can't 'find' it. Which makes me stressed and angry!

CouthyMowEatingBraiiiiinz Wed 12-Dec-12 02:35:27

2old - Christ he's on a lot of meds! And still no full control?

Is it problems with side effects at higher doses meaning that he is on a low dose of all 4, or is he on high doses of all 4?

Just worried about the combined Zombiefying effects of that many anticonvulsants at high doses.

Is he under a epilepsy specialist Neuro? IMO he should be. Not all Neuro's are epilepsy specialists, your local Neuro might be an MS specialist, or a Parkinson's specialist.

I see an Epilepsy specialist Neuro. When I'm allowed to! (PCT funding rows...)

Usually no more than two anticonvulsants are given at any one time tbh. I find four quite unusual, even for intractable epilepsy like mine!

ArthurPewty Wed 12-Dec-12 07:35:50

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moosemama Wed 12-Dec-12 18:44:10

Couthy, I often describe my memory as swiss cheese too. I used to be famous at work for having an infallible memory - everyone came to me about everything and I had practically memorised the whole phone book for an entire university staff. These days I can't remember my own phone number, I can hardly remember things from my childhood and my short term memory is, well, non-existant.

Last week I came home after going to school assembly to find my front door wide open! shock Fortunately it was shielded from view by the camper van and the dogs were locked in the kitchen or I dread to think what might have happened.

Word retrieval has been a big problem for me since all this started, both being unable to find words and saying completely the wrong ones.

Leonie, doesn't surprise me - dh has been trying to call my neuro's secretary since a couple of days after the seizure with no luck so far. I'm willing to bet £££s that they haven't been informed of my A&E stay. When I went to A&E about my foot injury my GP still hadn't been informed almost a month later. hmm

I'm not worrying about it, as she will probably want to wait until the EEG and MRI results are in before she sees me anyway.

It's been a very long day today - indie school was lovely and the staff even lovelier. Needn't have worried about what to wear, as kept my coat on the whole time and they were genuinely so lovely I don't think they'd've batted an eyelid if I was dressed in rags! grin

I loved the way that each time we were introduced to a staff member and they were told ds has AS they smiled, took a quick look at the notes the admissions officer had taken and said things like 'nothing difficult there at all, he's just one of our guys.' smile Every single member of staff had time for us and was able to speak directly about differentiating for his needs and their understanding of AS. All staff are ASD trained, including the ladies who serve lunch and all of the teaching staff and LSA's have a much higher level of training which is constantly updated.

School/LEA meeting was too short and didn't cover everything, but we did at least get the SENCO to admit they haven't been doing things the way the statement is written and manage to get an agreement that they will start doing things the right way from January. SENCO's face was thunder by the end of the meeting. There are still some outstanding problems that need to be dealt with - quite a few actually - and our advocate is none too impressed with the whole lot of them.

We have a lot to do, especially if we are going to fight to get ds into the indie. Still wobbling on the amount of travel involved, especially as we found out that they have a longer school day as well (9.00-4.00) which means he may be out of the house from 7.30 am to 5.00 pm, which is a lot for him to cope with. It took us 40 minutes to get there by cutting across the countryside at 9.30 ish this morning, so I reckon an hour is a reasonable expectation during rush-hour.

Apparently they have three minibus loads of pupils from our LEA currently attending, which is good in terms of precedent, but I get the impression we will still have a fight on our hands to get the LEA to agree to name them.

ArthurPewty Wed 12-Dec-12 21:23:29

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moosemama Wed 12-Dec-12 22:29:53

It is Leonie. The buildings themselves are a bit old and tired, but the knowledge, experience, friendliness and enthusiasm of the teachers more than makes up for it.

TA's/LSA's move up through the school with each year's pupils - right through sixth form if necessary, so they get to know what works with each child and get more and more effective in their support strategies as time goes on.

What year is dd in now? They seem very keen to talk to parents and show them round and the HT even offered to have ds1 in for a week to see if he likes it! shock I think they'd be happy to show you around, even if it's not for next year's y7 intake.

I asked how they would describe themselves as a school and they said they are a MS school with a specialisms in ASD and Dyslexia.

Sir Bob chatted with us for a while, after we bumped into him in the corridor, even though we didn't have an appointment with him. He said most LA's that have ASD provision tend to only have units and in his opinion those rarely work properly to meet the needs of children with AS, because they need to be properly included in the whole school experience with their needs properly considered and differentiated for, not just shipped in and out of a unit where they will either be 'in' or 'out' with the other pupils, depending where they are at any give time.

The only thing he said that was even vaguely controversial was that they are selective about who they take and they prefer not to take children who have aggressive or violent outbursts, mainly because a lot of their pupils are fee paying and they need that money to be able to run the school the way it's run, so they can't afford for parents to be unhappy about violent incidents in school. Which is actually fair enough, but could be an issue for some children who have ASD. Fortunately, ds1 hates all forms of violence and aggression, although he can get a uppity and over emotional on occasion, but it's all just verbal stuff and of course it's unlikely to happen often if they are properly meeting his needs.

They offer every child an individual transition plan, as many visits as necessary and gradual induction, so an hour a day at first if that's what they need and gradually building it up.

We were there for over two hours, so there's loads more - but overall, yes, fantastic place and well worth a visit.

ArthurPewty Thu 13-Dec-12 07:31:19

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moosemama Thu 13-Dec-12 09:58:19

I would schedule a visit for early on in dd1's year 5 then. That way you can build up a relationship with the school and so can dd. If you have Margo on your side hopefully you should be able to get her in without too much fighting.

Not so sure about ds1. He is making noises like he'd prefer to go there now and our advocate thinks we should forget the ms, even if the LA names it and fight for the indie. I agree, but can't get my head around how to do it given that we named 2 LA mainstreams to start with and then asked them to change the second choice (which of course they won't have done, because it's not protocol). Advocate has lots of knowledge and experience with our LA though, so hopefully he can guide us through it.

Such a pain not being able to tell ds1 what's going to happen, waiting and not knowing is so not good for a child who has as black and white thinking as he does. Poor kids gets tearful every time secondary is mentioned, but we have to keep chipping away or it will be a complete breakdown come actual transition. sad

ArthurPewty Thu 13-Dec-12 10:11:23

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moosemama Thu 13-Dec-12 10:39:24

Same here and to be honest, talking to potential schools does nothing to diminish that fear if there is the possibility of your dc ending up in a massive ms school that doesn't want him. sad

Ds2 is jealous of ds1 because the indie sounds so lovely. I will feel awful when he has to go to the local ms, but there's no way we could fund him going there unless we win the lottery in the meantime and then we'd have to find a way of getting him there, but I suppose if we'd won the lottery we could pay for a chauffeur to take us all every morning to drop them both off! grin

I have suddenly become a fan of the lottery after finding out that our advocate is funded by it. Going to buy a regular ticket from now on - so you never know ....

Mum always says we co-create our reality and if that's true I need to start co-creating a big fat windfall so all three of my children can go to a lovely inclusive school that positively promotes individuality.

moosemama Thu 13-Dec-12 10:40:11

Just thought - ds2 is in year 4 as well - so if we do win the lottery, your dd and my ds2 would be in the same year!

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CouthyMowEatingBraiiiiinz Thu 13-Dec-12 21:18:13

Leonie - were other parents taking photos? I know some schools still allow it. Flash photography with lots of flashes is NOT a good thing for lots of people with epilepsy.

My school hasn't banned photos, but they make adjustments for me by sitting me at one end, so its only in one side, always putting my DC's at that side, and I often wear sunglasses. Which doesn't look at all odd indoors in the middle of December...hmm grin

ArthurPewty Thu 13-Dec-12 21:20:22

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CouthyMowEatingBraiiiiinz Thu 13-Dec-12 21:33:29

If your husband is embarrassed by it them he's a fool. It shouldn't even be embarrassing to YOU, let alone to people around you.

The only time I feel embarrassed is when I lose control of my bladder.

Just have a chat to your DC's, explain that your brain isn't wired up properly, and that sometimes it can make you feel a bit funny. That it's nothing to worry about, just if they see mummy go like that to press 2 on her phone. (2 is a speed dial to my emergency contact...)

Treat it like it's just one of those things - explain to them that just like a person can be in a wheelchair because their legs don't work very well, sometimes you might not seem your usual self because your brain doesn't always work very well.

Once they are old enough to manhandle you, teach them to put you in the recovery position - most of mine, even with SN's, could manage it by 7.

<<Stern look at you both>>

Can you both please set up a speed dial number to your emergency contact number, and also store that number in your mobiles under 'ICE' (In Case of Emergency). Paramedics DO look for the ICE number, despite what people say. Personal experience.

Also chat to the people you wish to use as your emergency contact/s, and explain to them that they should check on you even if they get a silent phonecall.

Also teach your DC's your PROPER name (not just 'Mummy' - which is what paramedics got told by DS2 once when I was out with just him when he was 4yo and I'd had a seizure...)

Simple things, but could prove essential in an emergency.

ArthurPewty Thu 13-Dec-12 21:37:01

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CouthyMowEatingBraiiiiinz Thu 13-Dec-12 21:38:29

Just clapping? Were there lots of parents (over 100?)

It IS possible to have seizures where the trigger is a particular sound...

This IS quite complex. And unusual!

Would you consider talking to your local volunteer from Epilepsy Action? They also have a forum, I haven't used it in years, because you have to send in a form because they get a lot of trolls, but it IS a supportive forum, albeit a little twee. Not as twee as the American one I found before I knew about the Epilepsy Action one though!

ArthurPewty Thu 13-Dec-12 21:38:39

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CouthyMowEatingBraiiiiinz Thu 13-Dec-12 21:43:44

You NEED to go through it again and again with them, because then they know what might happen and what they have to do if it does, and it focuses them so that they don't melt down - if mum does X, Y or Z, I have to do A, B and C...

It makes it seem like just something that happens, and they have to do something. I have found that my DC's have coped far better than I thought they would - in fact, better than me, quite often.

The feeling of embarrassment you are describing - it's actually a paranoia that happens only during and immediately after the seizure, yes? It's part of the seizure.

Nobody is REALLY looking at you - often they won't have even NOTICED what's going on with you, unless you fall on the floor. Other people are not as observant as you think!

It's the 'dread' and 'foreboding' thing that can be part of Complex Partials.

ArthurPewty Thu 13-Dec-12 21:45:57

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ArthurPewty Thu 13-Dec-12 21:49:17

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CouthyMowEatingBraiiiiinz Thu 13-Dec-12 21:49:39

Technically, you don't ACTUALLY need a 'second' diagnosis - you have ALWAYS had epilepsy, you have just been lucky enough to have a number of years seizure free.

The epilepsy was still there though.

What you really need is a referral to a Neuro to discuss what meds to use now your long-standing epilepsy is active again...

Look on it as epilepsy that's always been there, but with periods of inactivity when you have been seizure and med free.

It's how I looked at it when mine restarted in February after two years without any major seizures, only little ones very rarely that were months apart. Now they aren't, they are days apart if I'm lucky.

But it's still a recurrence of the epilepsy that has been there since I was dxd originally 9 years ago IYSWIM.

You have ALWAYS had epilepsy ever since your original diagnosis. It's a life-long chronic health condition that can be inactive for years but start up again.

ArthurPewty Thu 13-Dec-12 21:50:24

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CouthyMowEatingBraiiiiinz Thu 13-Dec-12 21:50:54

Physical exhsustion yes, but the fact that the clapping seemed to be the immediate precedent is concerning as I KNOW somebody personally who has that as a seizure trigger.

ArthurPewty Thu 13-Dec-12 21:52:06

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ArthurPewty Thu 13-Dec-12 21:55:42

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CouthyMowEatingBraiiiiinz Thu 13-Dec-12 21:57:42

Ugh. THEY might have to, the NHS is terrible for that, but maybe it's how YOU need to look at it to help you to get your head around it?

Jump through the NHS's daft 'hoops', all the while coping with this recurrence of your pre-existing epilepsy by getting your head around the fact that it's always been there, but like a volcano, it's just been dormant for years. Now it's erupting again!

CouthyMowEatingBraiiiiinz Thu 13-Dec-12 21:58:48

Leonie - me too, me too. I 'say' I was seizure free for 2-3 years, but really I was free of 'big' seizures, if I'm honest with myself, not free of ALL seizure activity!

CouthyMowEatingBraiiiiinz Thu 13-Dec-12 21:59:52

Long term benzo's are a seizure risk in themselves. Did the GP prescribing them know of your history of epilepsy?

ArthurPewty Thu 13-Dec-12 22:02:14

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ArthurPewty Thu 13-Dec-12 22:04:17

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CouthyMowEatingBraiiiiinz Fri 14-Dec-12 02:10:01

How to make it clear to your husband - ask him what would happen if you were driving your DC's to town and you had a seizure while you were driving. Then sit back and watch the cogs turn...

I think they just don't equate seizure = Loss of consciousness = crash without actually REALLY thinking about it.

My Ex was more put out by me surrendering my licence originally than I was - he can't pass his test because of his dyspraxia, and I could no longer drive him to work so he had to find a new job, that he didn't like so much. He managed to conveniently ignore the clear facts that it meant 4 hours a day on the buses to do my school run (different school back then, only 30 mins each way now...), and it actually made MY life very inconvenient too, but the fact that it was for SAFETY REASONS had totally eluded him...


It wasn't until I sat him down and asked him what would happen if I had a seizure while the DC's were in the car that he twigged!

Point out that LEGALLY ANY seizure or blackout means that you should surrender your licence immediately - tell him to look on the back of his licence or online!

It's NOT just if you get a diagnosis of epilepsy, it's from the very first seizure or blackout that you are meant to surrender your licence.

You're not being lazy - you're following the law!

ArthurPewty Fri 14-Dec-12 07:00:54

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CouthyMowEatingBraiiiiinz Fri 14-Dec-12 07:16:09

Ah. My Ex also has ASD. Very wearing! Extra stress, isn't it.

What's so frustrating is that we both still love each other, but we can't cope with being in a relationship and living together, because it is too much work for me, when I've got my own issues, plus the DC's issues to deal with already.

Always takes so much explaining.

I wound up feeling like he was another DC for me to look after!

ArthurPewty Fri 14-Dec-12 07:26:17

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moosemama Fri 14-Dec-12 14:54:20

Leonie, sounds like you are having a really bad week.

I had an episode of severe tremor in my leg, coupled with a rather odd neuro episode when I was watching ds2's play last Easter and I was mortified because I was convinced the man squished up next to me would think I was doing it on purpose. I often start to feel odd when watching productions/performances in the school hall, but then we're packed in like sardines, the lights are bright and it's always ridiculously hot.

Had dd's first nativity yesterday, but this time the hall was only half full and I was able to sit on the end of an aisle near the door, so not too hot or cramped in - and the play was only 30 minutes. It's the first time in almost 8 years I haven't had a 'funny turn' at one of my dc's performances.

My dh was really bad with passive anger at me for having poor health until very recently. BUT he has done a complete 180 in his attitude towards since my seizure - I think it really frightened him. He was being such an arse before that I seriously thought our 20 years of marriage (25 years together in all) was over. Since then though he has been far more proactive in getting things sorted himself instead of expecting me to do it all and having had a day off while I rested, been totally overwhelmed by how much I have to do and how little time I have to do it - on an average day, let alone one where I have masses of medical or SEN related paperwork, meetings or phonecalls to deal with on top. I think he's finally had his eyes opened a little to what my life is actually like.

I got a letter this morning and had to call to confirm my MRI attendance. Called and thought I'd just check it was the open scanner and they said no. At which point, I got all upset and in a panic explained that I'm claustrophobic and had recurrent nightmares and flashbacks for weeks after the last one, so was pretty sure I wouldn't last 30 minutes in a scanner again, which made the appointment pointless. Fortunately, I was speaking to an angel in a nurse's uniform who spoke to someone for me, then put me through to yet another angel who was able to book me an open scanner appointment instead - prompting rather embarrassing tears of gratitude. blush

EEG on Monday next week, then ds1's Christingle Service in the evening, ds2's mini Christmas Play/Assembly on Wednesday then no more bloody school until 3rd January! Of course that's after I've baked and decorated close to 100 cupcakes for their school party days next Tuesday.

ArthurPewty Fri 14-Dec-12 18:25:42

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CouthyMowEatingBraiiiiinz Sat 15-Dec-12 14:05:22

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!!


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. sad

CouthyMowEatingBraiiiiinz Sat 15-Dec-12 14:12:15

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.


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

ArthurPewty Sat 15-Dec-12 15:46:05

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CouthyMowEatingBraiiiiinz Sat 15-Dec-12 16:14:27

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!!

coff33andmintspies Sat 15-Dec-12 16:19:23

good grief Couthy! angry

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

coff33andmintspies Sat 15-Dec-12 16:23:12

And moosemama shock 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

CouthyMowEatingBraiiiiinz Sat 15-Dec-12 16:26:42

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!! angryangry

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!

ArthurPewty Sat 15-Dec-12 16:49:09

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ArthurPewty Sat 15-Dec-12 16:49:28

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moosemama Sat 15-Dec-12 17:17:31

Oh Couthy. sad and angry angry 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. angry

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

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

moosemama Sat 15-Dec-12 17:18:03

Coff33 thank you. smile

moosemama Sat 15-Dec-12 17:21:55

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! confused

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.

ArthurPewty Sat 15-Dec-12 17:47:33

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mariammama Sat 15-Dec-12 18:06:59

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 wink "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 grin

CouthyMowEatingBraiiiiinz Sat 15-Dec-12 19:27:41

grin 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?!

ArthurPewty Sat 15-Dec-12 21:06:21

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CouthyMowEatingBraiiiiinz Tue 18-Dec-12 12:29:31

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...

magso Tue 18-Dec-12 13:09:38

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!

CouthyMowEatingBraiiiiinz Tue 18-Dec-12 13:50:51

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!! angry

<<Bangs head on wall repeatedly>>

ArthurPewty Tue 18-Dec-12 14:13:37

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ArthurPewty Tue 18-Dec-12 14:14:19

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moosemama Tue 18-Dec-12 15:08:01

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. hmm 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. sad

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! hmm

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. angry 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. angry

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. hmm 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! grin

ArthurPewty Tue 18-Dec-12 17:14:18

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ArthurPewty Tue 18-Dec-12 17:15:53

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CouthyMowEatingBraiiiiinz Wed 19-Dec-12 00:08:21

Yep, spot on. Not my dept, shuffle papers. Not my dept, shuffle papers, needs to go back to person 1, shuffle papers. And the cycle starts again.

And meanwhile, things get worse and worse and still no official diagnosis.

I'm booking double appointments in the New Year for me, then one for DS2, then one for DS3. I WANT BLOODY ANSWERS AND OFFICIAL DIAGNOSES FFS.

And don't get me started on MRI's - my first one was deemed 'urgent', took 4 months to come through. Everything looked 'normal', but dxd epilepsy.

Cue 4 years later, seizures worsening, sent for new MRI to compare results to make sure no obvious deterioration...and after the MRI they admit they can't do a comparison because they have list the friffing first one!


I haven't been 'allowed' to have one since, either, so another 5 years down the line, with symptoms worsening again, when I stamp my feet after Christmas and insist on a new one, they will probably have misplaced those films too!

Inept, and the phrase "not knowing their arse from their elbow" springs to mind...

CouthyMowEatingBraiiiiinz Wed 19-Dec-12 00:15:36

My wrists dislocate at least 20 times a day, I am so used to it that I pop them back in without thinking about it.

I have at least one finger dislocation a day, sometimes 10+.

And as for my neck - it dislocates so loudly that other people comment on it. It really is that loud (and painful).

But we don't have EDS...

This is despite 6/7 in the last three generations in our family having diagnosed Hypermobility syndrome, at the more severe end of the scale, with probable vascular and neurological involvement too.

But it's not EDS...hmm

ArthurPewty Wed 19-Dec-12 07:36:32

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moosemama Wed 19-Dec-12 12:44:49

Couthy, I was told they have a policy of burning MRI's after 5 years so no comparison could be made. shock Then suddenly two appointments and one year later they suddenly had a copy to compare. hmm

Sounds like we are all similar on the EDS front. I don't think I have any joints that don't sublux - oh wait, yes there is my elbows. I don't have significantly bendy elbows - but that's it everything else either bends too far or has seized up from bending too far and shifting about for too many years. I wake in the night regularly to pop my shoulder and neck back in and when I was a teenager, just about to take my A Levels, I dislocated my neck so badly that those little sticky out bits of bones crossed over each other and got stuck. I had my head stuck in one position for over a month and was off college, when I should have been revising. No treatment, no referral, nothing - apparently because 'no-one will do anything with necks, as it's too dangerous with the spinal cord etc'. <facepalm>

I was under paeds as a child because of problems with hips, knees and ankles - they even booked me in for an operation but I chickened out and told them it didn't hurt anymore because I was terrified - and they discharged me as a result! shock My knees used to lock up several times a day and I would be in agony and have to punch them repeatedly to release them.

Now no doc I speak to can be arsed to look back at my records to find out what it was all about, I was too young to understand and my Mum can't remember - but then they didn't tell parents anything in those days anyway.

... and what did ds's paed put on his report - despite receiving a 6 page family history clearly indicating EDS going back four generations on my Mum's side? "Mum and Grandma have some joint issues, but these are not a problem and have improved as they grew up". Er ... no, they worsened and as a result my mum has had one hip and knee replaced and needs the others doing, but still suffers pain in both joints because the ligaments don't hold the new ones in place properly. The physio I saw about my CRPS said she'd never seen such hypermobile feet and ankles, same with the hypotonia on both feet.

I have to admit, I have just stopped fighting re the EDS, as the whole of the NHS seem in denial about it and Prof G is pretty much a lone voice that we can't afford to see.

I raised the question of whether the vascular lesions on my brain might have been caused by EDS at my last neuro appointment and to be fair she was interested - for a minute - but then insisted it couldn't be because I tested negative for lupus! confused She seemed to think something would have shown up in my bloodwork hmm - again no point in pursuing it as she clearly knows naff all about it and wasn't interested in asking anyone who does know.

ArthurPewty Wed 19-Dec-12 13:40:11

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moosemama Wed 19-Dec-12 14:44:00

That's what I thought - but seeing as they mysteriously turned up at a later appointment without so much as a word, I just have to assume my neuro isn't terribly good at telling fibs! wink

I am silly, I really am. Just sat down for a quick coffee before the school run and started watching Lassie Come Home. Floods of tears! blush Honestly I have been welling up over practically nothing this week, so couldn't have picked a worse film to watch really. Doh!

ArthurPewty Wed 19-Dec-12 16:42:44

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moosemama Wed 19-Dec-12 16:58:28

Do they give you copies if you ask then Leonie? I always assumed they'd just tell me no. I know I have a right to request a copy of my notes - it's on the list with various FOI requests, but wasn't sure about test results etc, as they happen, iyswim.

ArthurPewty Wed 19-Dec-12 17:32:52

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moosemama Wed 19-Dec-12 17:45:56

I think that's part of the problem with the NHS to be honest - they make you feel that they own your health records and after a lifetime of being treated like that you have a tendency not to even question it anymore.

I think it's about time I starting questioning lots of things.

ArthurPewty Wed 19-Dec-12 18:35:05

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moosemama Wed 19-Dec-12 18:45:09

That's what I was thinking, that in the US you are in charge and obviously paying their salary, so there is a completely different relationship from the off.

Of course we also pay for the NHS, but we are made to feel like we should be so grateful for any crumb of care they throw our way that it tends to become ingrained in us over time ... until we wise up and stop taking it.

I remember being appalled when a consultant's secretary told me to phone up repeatedly and write a letter asking about my place on a waiting list, as that's the way people get moved up the list! It really is a case of 'he who shouts loudest' - as you have just seen perfectly demonstrated by your referral debacle. The other two referral letters are probably making their way through the antiquated NHS snail mail system and will arrive mid-January. That's why everything moves so slowly in the NHS.

My mum used to work for the NHS and often tells me that's exactly what the problem is - everything is done by snail mail. It takes a day or so for the doctor to get around to dictating the letter, then it get's typed, then it goes back to them for checking, then back for amendments, then it goes into the internal mail for processing to be posted externally - then it gets posted - often second class. It's just as slow for incoming mail, because it has to make it through stupid levels of admin before it reaches it's destination. It's a dinosaur and costs the country multi-millions every year. Why they can't just use email is beyond me - I can't believe they are still putting fax numbers on everything - who uses faxes these days? confused

ArthurPewty Wed 19-Dec-12 18:51:29

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moosemama Wed 19-Dec-12 21:01:50

But why didn't she email them a copy? It's not rocket science, how can they not see they are operating in the dark ages fgs. Urgh!

ArthurPewty Wed 19-Dec-12 21:20:47

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CouthyMowEatingBraiiiiinz Wed 19-Dec-12 21:35:13

Carrier pigeon is all the NHS will stretch to...wink

mariammama Thu 20-Dec-12 00:44:27

Friends husband saw these guys for possible EDS after local genetic team diagnosed "something-weird that's like marfans but isn't marfans". And was told he might be seeing Professor Mathias next, if other clinic says he has "something-weird that's not eds either"

mariammama Thu 20-Dec-12 00:49:38

NHS IT scandal explains the snail mail

moosemama Thu 20-Dec-12 09:52:14

Maria, they will only see people who are suspected of being complex, so having a crossover of two or more types or one of the types other than type 3 (Hypermobility Type) and getting anyone to agree to that enough to refer you is nigh on impossible unless you have very obvious symptoms.

Second link looks interesting, as it's hard to find anyone other than Prof G who is interested in autonomic dysfunction - again though, event though we are supposedly allowed to choose any hospital in the country for a referral, it's practically impossible to get an out of trust referral without a huge fight.

mariammama Thu 20-Dec-12 11:04:23

ah, df husband sounds genetically complex, so that explains it. Had a quick look at the second link's hospital website and they seem to be big on getting all their clinics uploaded to the national choose and book system. Presumably it's how they safeguard their institutional income by making it easy for your GP to refer in a few clicks before they fall prey to the local attempts at rationing wink... perhaps get a referral in now before the axe falls biscuit

ArthurPewty Thu 20-Dec-12 11:44:50

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CouthyMowEatingBraiiiiinz Thu 20-Dec-12 14:13:55

They do sound a bit like myo seizures, but most of the time myo's only affect one side of your body at a time. So a bit confused for me too, on this one. Though it DOES sound exactly like I get in my thumbs, and my eyelids, and the side of my face with my myoclonic seizures. It's all on the right side of my body - except the eye ones, which randomly are always on the left. hmm

I would write it down - and maybe ask for a sleep study, with a view to catching one on film?

Thing is, our cases of 'Hypermobility' (EDS) ARE complex. We have muscular, vascular, AND neurological symptoms. Still haven't managed to get the referral though.

I'm going to be bugging the GP under choose and book in the New Year...

ArthurPewty Thu 20-Dec-12 14:19:05

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ArthurPewty Thu 20-Dec-12 14:27:21

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moosemama Thu 20-Dec-12 14:27:37

In that case Couthy push for a referral to Sheffield, as they are the centre of excellence for dx complex cases.

I have no idea how much of my general health crappiness is down to the EDS, but I have my suspicions. I suffer from autonomic dysfunction (POTS) although again undxd and autonomic dysfunction is involved in CRPS. I have multiple vascular type brain lesions and lots of cognitive, neurological and more recently fine motor problems - but the neuro, although agreeing it was an interesting question, said the lesions can't be EDS related because nothing showed up in my bloodwork - which is a nonsense, because you can't dx EDS via bloods. hmm Then again, CRPS is related to autoimmune problems as well and a lot of autoimmune disorders would also explain many of my symptoms.

To be honest, I don't think anyone will ever be able to untangle it all, even if I really fought to be fully and properly investigated. Not least of all because in the NHS, each consultant would only look at their particular area of interest and not be interested enough in the overlap or knock-on effects of each problem to identify the underlying cause.

I know I said I would be going to the GP in the new year, but with the fight we have on our hands to get ds1 placed in the right secondary, realistically, I am not going to have the time or energy for anymore fighting until we have a cast iron school place offer and the deal is done. LEA are supposed to let us know the second week in Feb, so it will be at least the third before we receive the letter and then in all probability we will be off to one of the rushed secondary admissions SENDIST tribunals. sad

I am not good today at all. Still in my pjs under a blanket on the sofa. Boys have been a nightmare and I have banished them to their bedroom for the rest of the afternoon. Seriously considering sending their presents to charity. angry Any Christmas spirit I had yesterday from my lovely Secret Santa delivery has well and truly disappeared this morning. sad

moosemama Thu 20-Dec-12 14:28:57

Leonie, I'm sure I saw something on an American Epilepys association website about seizures that sound just like that. I'm pretty sure they even had a video.

I'll see if I can find it.

ArthurPewty Thu 20-Dec-12 14:52:18

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moosemama Thu 20-Dec-12 15:10:19

Just been searching. Can't find it - sorry. I'll keep looking though.

Don't worry about what a few nasty people have to say, there will always be people like that on any online forum - unfortunately.

ArthurPewty Thu 20-Dec-12 16:12:37

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TheLightPassenger Thu 20-Dec-12 18:13:50

re:wanting to e-mail etc referrals - choose and book is sometimes done via computer, isn't it, that might speed things up.

Leonie - if you don't use the alarm on your phone, would you still have these episodes on waking? just wondering if being awoken abruptly is triggering you, maybe some sort of natural lighting increase lamp might be a viable alternative, or even the radio coming on rather than an alarm?

ArthurPewty Thu 20-Dec-12 19:06:17

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ArthurPewty Thu 20-Dec-12 19:06:49

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ArthurPewty Thu 20-Dec-12 22:02:51

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CouthyMowEatingBraiiiiinz Fri 21-Dec-12 12:54:48


I wish I could help, Leonie.

Can't do Sheffield, I'm in the SE, it's too far away, hence pushing for a referral to Prof G in London.

Today GP said he suspects DS2 DOES have scoliosis (Another EDS symptom...), am seeing the other GP on the 28th, as he 'knows more about spines', and will hopefully get a referral about DS2's scoliosis.

But it's not EDS... [Eyeroll emoticon]

ArthurPewty Fri 21-Dec-12 13:03:28

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ArthurPewty Fri 21-Dec-12 16:00:50

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ArthurPewty Fri 21-Dec-12 16:02:44

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CouthyMowEatingBraiiiiinz Sat 22-Dec-12 08:51:14

I hear a huge 'TWANG' - like a huge rubber band in my head. It's usually just as I'm about to fall asleep, but it is a warning that I'm going to have a Nocturnal seizure.

It's weird for me to be able to describe these things and not have people think I'm completely utterly butterly!

ArthurPewty Sat 22-Dec-12 12:17:36

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ArthurPewty Sat 22-Dec-12 19:55:44

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MerryCouthyMows Sat 22-Dec-12 20:53:31

It doesn't sound to me like you are imagining it, I get exactly the same thing - its a myo seizure in your eyelid!

ArthurPewty Sat 22-Dec-12 20:57:30

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MerryCouthyMows Sat 22-Dec-12 23:21:49

Um, no!

Tonight I have to finish wrapping, tidy my baking cupboard because I can't find anything in there, wash up, do the bins, throw some tinsel at the kitchen and write my neighbour's cards. (Only the nice neighbours, not the butch next door)

Tomorrow I need to scrub my kitchen, clean my oven, put away the rest of the clean clothes, sort out the DS's room, scrub the upstairs bathroom, get my ex to chuck loads of stuff up in the loft, and mop and Hoover everywhere.

I'm doing my baking on Monday.

And on that note, I must stop procrastinating on MN and actually get on with stuff!!

ArthurPewty Sun 23-Dec-12 07:54:24

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mariammama Sun 23-Dec-12 10:10:21

Couthy, ds2's scoliosis is the perfect excuse to get him seen at Great Ormond street or here Random article.

ArthurPewty Wed 26-Dec-12 20:59:37

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MerryCouthyMows Wed 26-Dec-12 23:38:28

What's up, Leonie?

ArthurPewty Thu 27-Dec-12 08:24:21

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MerryCouthyMows Thu 27-Dec-12 10:21:59

It's horrible, the waiting. You must allow yourself time to rest, even over Christmas. I just hope you get answers soon, they shouldn't be leaving you this long.

ArthurPewty Thu 27-Dec-12 10:27:38

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mariammama Thu 27-Dec-12 13:55:52

Waiting till Feb-Mar clearly bad. Locum perhaps good.

In my experience, locum consultants can be really good; they're usually relatively young and up-to-date. They're also keen to make their mark so they get offered a permanent post. Hopefully yours will have just finished his/her many years of specialist training at the big teaching hospitals, and maybe done some research too.

mariammama Thu 27-Dec-12 14:02:53

Your mission at the first appointment is either a spot-on, instant diagnosis.... Or to make them think your illness is an interesting puzzle wink. Dr Locum-Career-Advancement needs to figure out for themself be spoonfed realise that pursuing this could change your life, be intellectually satisfying and make their colleagues gasp with admiration.