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

996 replies

moosemama · 25/11/2012 22:37

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

OP posts:
MerryCouthyMows · 04/03/2013 07:48

Good luck. Thinking of you. Don't forget your symptoms list. I have done that once myself!!

Will be back later to see any updates.

House ready for portage assessment.

moosemama · 04/03/2013 09:28

Good luck Leonie.

Just of to Heartlands myself with ds1 for his blood test.

Let us know how you get on, will be thinking of you all morning.

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NoHaudinMaWheest · 04/03/2013 11:38

Best wishes Leonie hope it goes well.

All the best with blood tests Moose and portage assessment Couthy.

moosemama · 04/03/2013 12:59

No news yet?

Ridiculous pallaver getting ds's blood test done.

Took us 45 minutes to drive to Heartlands, then drove round the carpark for nearly 15. Put on his emla cream in the entrance hall and had to hike from one side of the hospital campus to the other (there is no parking near the paeds dept - it's all on the other side of the hospital). No signs for new paed phlebotomy department, so had to detour to paed outpatients and ask. Eventually found the place (no signs, just a laminated note on the door Hmm) and took a number. There were only three people in front of us, but had to wait an hour, for most of which they weren't calling anyone in - by which time the emla was starting to wear off. Angry

Then the lovely people that came in after us with their 17 year old daughter decided to lie and say they had the ticket number in front of ours (which no-one had) and went in ahead of ds! Angry Got in there and they said he didn't need emla, as because it was only one test for FBC they would do a finger prick instead. So despite his arms being numb, they wiped off the emla and pricked his finger, then squeezed it to milk enough blood out. Hmm We then hiked all the way back, paid three pounds for parking and had a half hour journey back home - all for one little finger prick - bloody farcical. If we'd gone to our local hospital we could have been there and back in 45 minutes. They've always done his bloods in the past and have been really good at it - no problems whatsoever. Angry As my GP said it's ridiculous, he's 10 not 2, it should be a choice for children that need it, not a directive for all children under 18.

The paed blood department was filling up more and more after we arrived, not enough seating and only two phlebotomy bays for the whole of the Heart of England PCT. You aren't allowed to go anywhere else for paed bloods now either, so that's 2 phlebotomists for the whole area, whoever thought of that bright idea wants sacking. Hmm

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MerryCouthyMows · 04/03/2013 13:13

Portage assessment went MORE than excellent!!

DS3 will be getting portage, and she is recommending that his Nursery placement be the SN school (with a Nursery class) that I looked round last week and he had been informally accepted!!!

GrinGrinGrinGrin

And she saw many of his 'autistic spectrum behaviours', which she is going to include in her report.

Her report will form the basis of whether he gets a sstatement or not, so this was a far better outcome than I could have even hoped for!

She is also going to look at what courses she can send me on - not early bird but there was another one she mentioned that I can't remember the name of because DS3 was having a meltdown at the time because he couldn't have the specialist preschool teacher's pen!!

I think it has helped that she came from another part of Essex, called in because two of the three local assessors are on Mat leave.

Her area is known for being far better with provision than my area of Essex - she asked me if it was hard to get things like this, and diagnoses wrt Autism in my town, and I agreed (because it fucking IS, I've waited 15 years for help with DD). I think in part she has been sent by County to see whether all the parent complaints are justified. And she rolled her eyes when I explained about DD, DS1 and DS2 - she even said that it DOES sound like DS1 has Aspergers, because of the difference on his academic ability and his total lack of social skills!

She said that one of courses she is wanting to send me on will help with the older DC's issues too!!

I just can't believe how well it went!

And my HV is going to be pissed off, because she kept telling me that DS3 should be in MS for Nursery, because he 'needed to be around children that are developing normally'. So screw her, I DID know what my son needed, and she can shove her patronising attitude and treating me like I'm incapable of sorting this for DS3 where the sun doesn't shine...

Happy news for once!!

GrinGrinGrinGrinGrinGrinGrin

Hope Leonie's appointment is going well...

MerryCouthyMows · 04/03/2013 13:19

Sorry to hear about the hassle for getting your DS's blood taken.

What bright spark thought of only having two children's phlebotomists for a whole PCT?! In my PCT, even DC's can choose where to get their bloods taken (3 different sites), or they can choose to use the adult phlebotomists like DS1 does. He chooses to do that because as he says - far more adults than DC's need blood tests, therefore they have had more practice, ergo they will make it hurt less.

And he's right!!

ArthurPewty · 04/03/2013 13:27

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moosemama · 04/03/2013 13:29

Couthy that's brilliant. I am so pleased you have some positive news and forward movement. Smile

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moosemama · 04/03/2013 13:32

Cross posted Leonie.

I am so relieved for you and so pleased you finally got to see someone who was both lovely and capable.

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NoHaudinMaWheest · 04/03/2013 14:39

Couthy and Leonie really pleased that you both have some good news for once.

Moose that sounds like total madness. Is Ds ok?

moosemama · 04/03/2013 16:19

Yes thanks NoHaudin, he was a bit green for a while, but wanted to go into school to show his best friend his bandaged finger! Grin

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MerryCouthyMows · 04/03/2013 16:29

I'm so glad you have a resolution, Leonie. No more self doubt! You knew you were right, and it was proven so.

As I said before, you still HAVE epilepsy, even if you are seizure free for years.

It must be such a relief that it wasn't blamed on 'anxiety'. I mean, WTF? Anyone HAVING SEIZURES BECAUSE OF EPILEPSY is going to feel a bit anxious, especially if they are unmediated and without a firm dx!!

I'm just glad it has been as good a day for you as it has been for me.

If you need to chat about how it's going with titrating the Lamotrigine, I'm happy to chat still!

I've got my GP appointment to talk about some extra AED's for my op tomorrow. God knows what adjunct they'll put me on - Lamotrigine had no effect whatsoever on my seizures, I'm allergic to Epilim, tegretol made my liver start to fail, Topamax actually made me permanently lose my peripheral vision AND have bipolar symptoms that stopped within a week of me discontinuing the tablets...

I'm currently on Gabapentin, which gives me a bit of seizure control, but nowhere near what I need.

Because of the hormonal component to my epilepsy, I believe I should be on Diamox (acetazolamide) anyway, as an adjunct to the Gabapentin, but for this op, my guess is that the GP adds one of 4 meds :

Gabitril (tiagabine) - not often used as an adjunct to Gabapentin, so unlikely.

Trileptal (oxcarbazepine) - probably the most likely IF the GP is allowed to prescribe it, as I don't currently HAVE a Neuro...

Frisium (clobazam) - possible, but again depends on the GP's ability to prescribe it.

Zebinix (eslicarbazepine acetate) - probably too new to be prescribed by a GP tbh.

So, all in all, god knows what pills I will end up with after tomorrow...!

MerryCouthyMows · 04/03/2013 16:29

Grin Unmediated = unmedicated. Bloody Autocorrect!

ArthurPewty · 04/03/2013 16:32

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ArthurPewty · 04/03/2013 16:33

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ArthurPewty · 04/03/2013 16:39

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MerryCouthyMows · 04/03/2013 16:39

Leonie - did the consultant talk to you about how Lamotrigine can affect your contraception? Just a thought that occurred to me! If you are using hormonal contraceptives (pill, mini pill, depo injection, implant, Mirena coil), Lamotrigine can lower the effectiveness of that contraception.

You should be advised to either double up on hormonal contraception (using two methods), or use a barrier method of contraception.

Just wanted to warn you, though it may not be relevant if you or your partner have been sterilised!

MerryCouthyMows · 04/03/2013 16:41

(I fell pregnant with my angel baby that I lost to Chicken Pox thanks to not being warned about this at the time by my consultant)

MerryCouthyMows · 04/03/2013 16:46

That's interesting about the frisium, Leonie. No matter how many times I've told old Neuro's and my GP that my seizures almost quadruple in frequency and severity for the week before my period, not one of them has EVER suggested adding frisium (or anything else) as an adjunct just for that week.

I may get to writing a list for my GP for tomorrow. And do some research on what Neuro I would like to be seen by. Probably somebody in London, as my local hospital is just crap and has no epilepsy nurses and no epilepsy specialist Neuro's.

I may well ask the Gynae consultant that witnessed my multiple seizures after the snorted attempt at loop diathermy and cone biopsy on my fanjo to write a letter stating what he witnessed. Might hold more weight from another consultant.

I need to do what Leonie has done, and try to get this sorted, because currently the epilepsy is running my life rather than the other way round!

ArthurPewty · 04/03/2013 16:54

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MerryCouthyMows · 04/03/2013 16:55

Ok. Just wanted to inform you, because I wish I had been bloody informed!

MerryCouthyMows · 04/03/2013 16:56

ARF at 'snorted attempt at loop diathermy'. Not exactly an area you want to snort near...Wink

ABORTED attempt FGS.

Autocorrect bloody hates me today!

ArthurPewty · 04/03/2013 18:05

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moosemama · 04/03/2013 18:14

Thanks Leonie.

He's ok. For a child with health anxiety he was surprisingly calm about it all and was very proud of his bandaged finger! Grin It was me that was p'd off with the whole farcical rigmarole. Blush

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ArthurPewty · 04/03/2013 18:27

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