Moose here, Not SEN children but could someone please advise me - epilepsy

[moosemama]

Well my weekend away was disastrous in many ways, but the most significant one was spending the whole of today in the Acute Medical Ward of the hospital after having what is believed to be two fits last night. (Meanwhile my poor old Mum was coping dd recovering from a vomiting bug and ds2 coming down with dd's bug really badly and even throwing up in his sleep over and over - so she had to sit up all night with the poor mite. )

As for the weekend away, I didn't even make it to the meal. 6.30 pm, ordered my meal, felt a bit odd, realised it was neurological and dh took me back to our room - which was in the building next door. Went to bed and after a while felt well enough to think I was just going to sleep and would probably feel better later and perhaps join the guys for a drink before the end of the night. So sent dh back to join our friends.

Woke up an hour later felt odd and disorientated. Went to the bathroom, sat on the loo, felt odd and then woke up under the toilet, head and feet the wrong way to have just fallen off/fainted. When I came round I was aware of a sort of growling noise, and then a pain in my head. I realised when I came out of it that the pain was my head repeatedly bashing the underside of the wall hung toilet bowl.

Lay there for a few minutes until I felt I could move, got up wobbly and sat on the loo, then wham - woke up under the sink on the other side of the room - it was a really big bathroom, so again too far away to have just fallen.

There was no warning, although I did feel really strange. No dizziness and I didn't feel link I was fainting - which has happened to me a lot over the years and I would recognise that "uh-oh, here I go, slidey feeling". It was literally just, one minute I was sitting on the loo, the next I was under it with a head covered in lumps - the worst one being my left eye socket. Fortunately it didn't develop into a full on black-eye, just a shadowy bruise that can be mistaken for a shadow - can't imagine having to walk into school tomorrow with a black-eye.

I also ache all over today and seem to have wrenched my shoulder - although I can't imagine how.

So there I was, locked into our suite on my own feeling very scared and shaky, with dh at a gig in a separate building. Managed to crawl back to the bedroom and grab my phone and by a miracle got pretty much the only decent mobile signal I had all day to send a text that read He L p.

Dh is now back in my good books after coming thundering through the pouring shropshire rain and up three flights of stairs to rescue me. He had been drinking so couldn't drive (not that we knew where the hospital was) and all I wanted to do was sleep and wouldn't let him call an ambulance, so he insisted on checking my pupil reflexes for concussion, before sitting with me until I fell asleep.

Sooo, my question is can you be aware you are having or rather coming out of a fit, or would you be completely oblivious to it? I have always thought you have absolutely no idea what's going on and because I was on my own, no-one else saw what happened.

The doctor I eventually saw at the hospital felt it was suspicious enough for them to want to keep me in and run some tests tomorrow, but I refused as ds1 was already in a state, having expected us back at 4 pm and Mum wanted him to sleep over there, which would have screwed the whole week up for him due to the routine change.

Most of the standard neuro proddy pokey tests they did today were normal, but I had a positive Babinski's reflex in my left foot (the one with Complex Regional Pain) and I have felt like I have a really bad hangover all day - which is rather unfair considering I didn't get a chance to drink. In the end they agreed to discharge with an urgent referral for outpatient EEG and yet another MRI, plus a letter informing my neurologist.

I really want to believe I just fainted, but know it didn't feel like that and I to be honest I get upset and frightened just thinking about how it felt at the time. My friends want to rebook in January for a 40th birthday, but I can't bear the thought of going back there.

You're bound to be, but you'll be fine. Just take your notes, state the facts, explain how much it's affecting your life and stand your ground - and imagine me and Couthy standing behind your chair with our arms crossed and stern faces.

Glad it went well. Hope your appointment is just as good.

I have just had a shitty call from the Ed Psych basically saying they aren't going to offer ds any support with his school related anxiety etc.

Sooo ...

GP said he needs CAMHS, but they won't listen to her so go via Paed.

Paed said CAMHS won't take a referal from him as it's school related, so he contacted EP.

EP said all they can offer is one session offering me some advice on how to support him myself.

FFS talk about falling through the cracks - and in the middle of all this is a child with severe anxiety, so bad it's affecting him physically in numerous ways, caused by the school's failure to support him properly - despite his statement and a multi-prof meeting where everyone, including them, agreed what they should be doing.

EP said ds has had a lot of professional input, as he had EP crisis team Nov 10 to Jan 11 for 10 sessions and has had outreach/inclusion teacher since and therefore she can't/won't offer anything more.

EP sessions were good at the time, but ended abruptly at the point of his assessment and dx just as he was starting to make some progress on emotional scaling/literacy.

Inclusion teacher only gets half an hour with him and has told me that for the whole of last year she couldn't really do much, if any, work with him because due to his high anxiety, he needed to talk about his worries during their sessions. This year she has said he is no longer willing to confide in her anyway and she only sees him intermittently now, so is leaving it to his LSA, who he has told me does nothing with him other than tell him the timetable for the day and allow him to check his email.

Weekly emotional literacy session was written into his statement, but they refused my wording and school have used that to say that his EL provision is included in the bloody weekly social skills group (also required separately in the statement) and basically means he will just continue to attend the same bloody SEAL group that he's been attending since reception and has made zero difference. It's 20 minutes a week in a group and the topic is tailored to the needs of the majority of the group at the time, with other children coming and going according to their needs and whatever the next topic is. Ds has attended every session for 7 bloody years, barring one half term last year when the CT inexplicably stopped him attending and seemed to 'forget' he was supposed to go back.

EP refused to contest the school on this point at the multi-prof meeting and bloody inclusion backed them up, despite admitting the SEAL group is crap and needs a total overhaul, which they are hoping to start this year. (Of course it will be too late for ds by the time they get it sorted - if indeed they do, as the school is very resistant to changing it.)

So basically he has had no intervention for school related anxiety and Emotional Literacy (despite the latter being in his statement) since Jan 2011, yet the EP seems to think he's had too much.

It's like some kind of nightmarish merry go round - same-old/same-old and here we go round again!

Sorry - just needed to let that out!

Does sound like physical evidence.

Anecdotal evidence from an epilepsy forum

Listed here as a symptom of partial/focal or complex partials

Moose, go back to camhs. Say you took their advice and school (tier 1) have given it their best shot, as has EP (tier 2, some are tier 3) but their assessments have been suboptimal, the interventions have failed, and you think they lack the clinical expertise to offer effective treatment in complex anxiety. Here's the criteria, most areas are similar.

Adult mental health aren't allowed to refuse CBT if the stress is job-related / uni-related etc, the issue is not causation, it's whether its a major illness or not.

Maryeeya, thank you that's really helpful.

I'm starting to feel so helpless. We do our best, but haven't a clue if what we're doing is right or might be making him worse - he needs professional help. My mum is a retired clinical psych and does give us advice if we ask her, but she is very close to him and therefore too closely involved.

Just read the criteria. I think with similar criteria ds is losing out because the EP, GP and psych say we are good, effective parents and the problem relates only to school.

His emotional/anxiety related issues are significant and enduring (this has been ongoing since y3 and he is currently in y6) but I think they are saying not complex, because it all relates to school. He is securely attached happy at home (although often acts out school related stress and distress here) and once school is removed from the picture eg summer hols, his issues resolve until just before terms starts again. His tics stopped within 24 hours of breaking up for christmas and upset stomach, reflux and enuresis started up again 48 hours before he went back, as soon as he realised he was going back.

Unfortunately, he is fixated on having to attend for every single day this year, as he is leaving in July and can't cope with the thought of a change that big. Despite everything he's been through there, having attended that school every day for 7 and a half years since he was 3 years old is so ingrained, that he can't cope with the thought of his routine being any different. It may be crap, but he knows where it is (and that I am at home just across the road), how he gets there, who everyone is etc and that is a security blanket in itself. Unfortunately, the school can't understand that and take his refusal to take a day off as a sign that he loves school.

I can't wait to get him into the lovely school we are hoping and praying the LEA will name for secondary, as it's actually smaller than his current primary and extremely good with children who have ASD and related anxieties.

It just feels like he doesn't fit anywhere for support really, as the EP stated on the phone that he is likely to always highly anxious due to his ASD and he needs to learn to deal with the associated feelings to that he can continue to function despite the anxiety. (Well yes, but who is going to do teach him, when you all say it's not your responsibility. It's all well and good going on about relaxation and mindfulness, but we have tried it all over the years and nothing works on the school related stuff.)

What's she's missing is that he does handle the anxiety if it is about anything other than school - because school is beyond our control and often I cannot offer him any strategies/solutions other than to tell his teachers/LSA what the problem is. Unfortunately, he no longer trusts them enough to do this and even if I push him to tell them what's up, nine times out of ten not enough is done to sort it out and I am powerless to make them do it. He has had a rough time since realising that I can't fix everything for him, especially if the problem is in school, because these days they basically just ignore everything we do or say - even if backed by other professionals.

At home, if he is anxious about anything we spend time working out what he is feeling and why, put things into context and come up with a strategy/plan for dealing with it, as well as giving him whatever he needs to cope with the feelings - be that space, time, a cuddle, extra time on his DSi etc. That's all well and good for home-related stuff, but when it comes to school he knows that anything we do at home is all talk and nothing we can do or say is going to change what goes on inside school and they don't use any strategies to help him handle the anxiety - even when it's so bad he can't hide it from them.

Last year he had two awesome teachers who kept on top of his feelings/anxieties using the agreed process, then did the same things we do at home whenever he was upset or anxious and he had the best school-year of his life because they listened, heard, understood and dealt with the issues as soon as they arose - keeping his anxiety levels low and manageable. This year - now he has a statement and the school is p'd off with us - they just pay lipservice to the support he's supposed to get, tick the boxes and send him on his way. So, we have a child who is fully aware that they have no intention of helping him like last year's teachers did and are just going through the motions, so there's no point in even bothering to ask them for help. He has also become aware that his parents aren't able to make the school support him properly - so his anxiety just builds up and up and spirals out of control.

Thanks Leonie, I'm not really looking for advice, just ranting from the sheer frustration of it all. Not helped by raging PMT!

Glad the Ep Soc were able to reassure you and verify that it's a very valid sign. As for consultant, just tell him that the Ep Soc advised to you keep and bring along all the documentation - that way he'll know you have had sound advice, rather than just being someone who googles and self dxs. It should add to your case, not take away from it.

Just dropped dd at nursery and am fully intending to curl up on the sofa and eat some chocolate. Period from hell has now arrived, so hopefully my mood will lift soon.

Interestingly I think I am starting to see a hormal link to my symptoms. My worst symptoms and both lots of seizure/seizure-like episodes have happened in the days preceding my period starting. Not sure what that means or if it affects treatment/management. I do know they can't/won't treat me with hormones etc though, as I am considered high risk for stroke thanks to my complex migraine history and vascular brain lesions. So that means no pill or HRT for me. I am wondering if I am going into peri-menopause and that's triggering it somehow - all speculation though and I don't have the energy to research it at the moment.

Re ds1, I was actually starting to dare to feel a little bit more optimistic what with the LEA agreeing to approach the indie school and inclusion boss saying she definitely wants him there and will push the LEA to go for it. Then the EP's phonecall last night, along with my hormonal low mood somehow just managed to knock me sideways. A bit like a kick in the guts to remind me not to dare to hope.

best wishes for your appointment Leonie, given your US medical history I really hope diagnosis is a formaility

EpSoc page has some info on women, hormones and ep www.epilepsysociety.org.uk/AboutEpilepsy/Epilepsyandyou/Womenandepilepsy-1

Sorry school continue to be so dismal, and EP too, possibly your mum could help with navigating the system to get some sort of psych input from CAHMS as maria suggests.

Thanks TLP, but Mum has only been in private practice, semi-retired doing supervision to professionals for some years now, so is too long out of the system to be able to advise - plus paediatrics is not really her area, although obviously she covered the basics of child psychology when she qualified. Everyone she knows is involved in adult care and very specialised. She has tried, but doesn't have the necessary network anymore.

To be honest, I think what he needs is to get out of that school asap. I would love to just pull him out and homeschool until September, but he won't have it.

Thanks for that link. Have just had a read and I do think the hormonal element may be relevant for me, so will make sure I bring it up - if I ever get a neuro appointment.

Currently feeling awful, because dd managed to headbutt me full force in the face when I was helping her change out of her uniform. Could well get a lovely black eye out of it and now have a corking headache to go with my period pain.