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Gah. Have got The Fear about tonight...

(23 Posts)
r3dh3d Tue 11-Oct-11 13:32:57

Background; DD1 has SLD and a bunch of other stuff, but the exciting part is the Epilepsy. Which is fairly severe and very difficult to manage. Her consultant is off for the forseeable, and the hospital have a temp in. There is a theoretical escalation point to the regional neurologist but he is reluctant to make big changes, pending the consultant's return but mostly pending investigation for brain surgery at a London hospital to stop the seizures.

More background: the London hospital are supposed to have arranged loads of tests but we've had no appointment letters and they won't return my calls. So we are in limbo, and DD1 chooses this moment to have a major wobble in seizure control. Her emergency meds are only partially effective. Nobody knows how much to give her, or what of. For the moment we are giving her what we have used in the past, as an extra med at night.

The temp consultant (who I pray I am seriously misjudging, but looks extremely wet behind the ears to me) is too timid to prescribe, so has booked an emergency eeg for tomorrow afternoon. In the meantime, we can't give her any emergency meds at all because that would duff the eeg results.

She is quite likely to go horibly pear-shaped tonight. Fingers crossed she won't, and fingers crossed that if she does we can get her to hospital in time. (We are quicker than the ambulance ime.)

I am just so stressed about it. And I am usually so calm about this stuff, I just deal with it. I think the thing is, I deal with it as it comes. Now I've got the luxury of advance warning, and it's not nice at all. sad

silverfrog Tue 11-Oct-11 13:53:58

oh, that does sound hard.

(hugs)

I am sorry, I have absolutely no experience with epilepsy and seizures. I do know how the advance warning bit can work - the build up is so stressful.

is there anything you can do to take your mind off it? so that if it does happen tonight you are more in the 'just deal with it' zone than the 'stricken in headlights' zone?

is there anything we can do here? an extra Tuesday night chat thread to keep you occupied? I am sure we can rustle up a few posters to natter on and try to keep your mind off things?

<sorry, not much help at all>

TheNinjaGooseIsOnAMission Tue 11-Oct-11 13:56:32

will keep everything crossed for you r3 for tonight. Probably stupid question, but have you tried pals, consultants secretaries? I hate seeing someone different with dd3, especially when they look like a rabbit caught in the headlights and all they end up saying is to come back when usual doctor is back.

insanityscratching Tue 11-Oct-11 14:02:10

Could you insist she is admitted to hospital tonight until she has the EEG tomorrow? Sorry I have no other suggestions though, you must be out of your mind with fear.

fatzak Tue 11-Oct-11 14:03:13

Oh that sounds awful. So you couldn't use your emergency med at all even she was having a prolonged seizure?? That would be freaking me out too!! Will they not probably just administer something at A&E if you end up there, despite the EEG tmrw?

But good news on getting the emergency EEG booked in - they must have had some kind of rationing on them at our hospital, the fights we used to have to try and persuade them that DS was in fact in non convulsive and they should do an EEG!

Good luck tonight and hope DD does better than you think x

r3dh3d Tue 11-Oct-11 14:51:16

Fatzak - well the interim agreement is we won't use the clobozam at all, we won't use the diazepam unless she has a proper TC at home, and if she has something else and can't get out of it unaided we haul her into hospital - straight onto the ward, not A&E who wouldn't know what to do with her anyway, but what the ward will then do is anybody's guess. At least they can stick a SATS monitor on her while they page someone who can spell "neurology".

On the other hand, knowing her, and her ability to be utterly seizure-free on the day of any planned eeg, she'll probably be absolutely fine tonight, sleep like a log while I have matchsticks propping my eyelids up, and spend the whole eeg cheerfully pulling the wires off her head. hmm

I may take a hip flask with me.

ThePumpkinofDoomandTotalCha0s Tue 11-Oct-11 17:45:55

hope it's a boring peaceful night for you r3. re:london hospital referral - might be worth pursuing with relevant department direct - e.g. if it's CT type investigations with the radiology department rather than neurology. apols if you have already tried this.

shaz298 Tue 11-Oct-11 17:54:01

I think the suggestion of being admitted tonight pending the eeg tomorrow is good advice. At least then is she does have a crisis,which in the circumstances is entirely possible, you have no need to be worried about getting her to hospital. xxx

EllenJaneisnotmyname Tue 11-Oct-11 18:02:57

Just some hand holding. smile I hope it's an uneventful night.

Triggles Tue 11-Oct-11 18:33:34

Here's hoping you have a quiet and uneventful night. Best of luck!

coff33pot Tue 11-Oct-11 18:45:04

I dont have any experience of seizures but understand how up in the air you must feel.

I am around most of the evening so tend to pop on and off till at least midnight if you want to just plain keep talking give us a holler smile

madwomanintheattic Tue 11-Oct-11 18:47:02

yy, i would def be asking for a bed tonight as she has been taken off her meds prior to eeg... would that be more stressful though? have you got open access to the ward - could you give them a call and see what they think?

madwomanintheattic Tue 11-Oct-11 18:47:42

and here in canada it'll only be midnight when you're up at 7am. grin

r3dh3d Wed 12-Oct-11 09:00:46

Well, thankfully, DD1 decided that as she has an eeg tomorrow she had better not show any signs of Epilepsy at all, in case they detect something helpful hmm. Only a couple of mild seizures last night, and bright as a button and very interactive this morning. It's like a different child, was tempted to check in the bed to see if the real DD1 had got wedged down the back of the mountain of stuffed toys or something.

WilsonFrickett Wed 12-Oct-11 09:16:53

Typical! At least you had an OK night though. Good luck for what the day brings.

TheNinjaGooseIsOnAMission Wed 12-Oct-11 10:18:16

hope all goes well today smile

coff33pot Wed 12-Oct-11 10:39:29

Glad last night wasnt so bad and hope today goes well smile

madwomanintheattic Wed 12-Oct-11 14:18:38

good luck x

insanityscratching Wed 12-Oct-11 16:00:54

So glad last night was uneventful, hope today has gone well.

r3dh3d Wed 12-Oct-11 16:55:19

Well, I'm not sure whether today was splendid or just damn odd, tbh.

DD1 was on fine form at school, and I didn't think they were going to get much out of her. But they were running a few minutes late so she fell asleep in the waiting room, slept through most of the wires being attached, and only woke up as they were putting the last couple on. As usual when rudely woken, she had a seizure 3 minutes later, so though they didn't manage to turn the recording on till she had been going for 10 seconds, they got the rest of it. A good 45 minutes. The poor EEG bloke was not happy having to write all that up! grin

So, they got plenty of data, and that's good. What's less good is that apparently the recording during the early bits of the seizure, with the thrashing around, moaning, drooling, etc. is relatively normal. The bit at the end where she comes out of it and is apparently back to "normal" is weird as chuff. Which is DD1 all over (never do anything the straightforward way, not even having a seizure hmm) but the meh part is that her background readings are so whacky. So the consultant is consulting another consultant (ha ha!) and they are drugging her into oblivion till Monday by which time they will hopefully have decided what to do with her medium-term.

madwomanintheattic Wed 12-Oct-11 17:18:54

ah. medical anomalies. ya gotta love 'em.

hopefully there will be some sort of pattern they can identify... eventually.

hope she's ok until monday x

ThePumpkinofDoomandTotalCha0s Wed 12-Oct-11 17:30:26

well at least it wasn't a wasted hospital trip, but not exactly reassuring for you that the consultant was a bit puzzled.... best wishes for a dull, non anxious making weekend!

coff33pot Wed 12-Oct-11 17:54:35

glad it went ok and that at least now they have a reading of whats going on even if they got to club together for a pow wow first!

Good that you have a worry free weekend while she is on meds at least you can perhaps get some well earned rest smile

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