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Original poster

dd had a proper seizure: didnt know what to do i froze

23 replies

trace2 · 16/01/2009 15:21

as most know dd now 19m as sorts of postures well early this morning at 5 30 dd was shaking tbh i thought she was cold and shivering until i relized she was not cold and had no temp i knew , but i froze i tried to wake dh as usual i couldnt then she stopped!

i know i should have took her to a&e and dint i feel awful it was cos it was diffrent i have told our nurse she says when/if it happens again i have to phone for a abmerlance. i feel like shit that it happened and i went to pot

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bubblagirl · 16/01/2009 15:31

don't be hard on yourself shock can make us freeze now you have been given the advise next time you will react differently hope you and dd are ok big hugs to you xx

lou031205 · 16/01/2009 15:45

trace, it is perfectly natural. DD had a drop attack on the toilet at preschool today, and fell off banging her head on the floor. It happened so quickly. It was only when I was describing what happened to the preschool leader that I realised that the reason I didn't know how it had happened was that it was a drop attack! I hadn't even recognised that that is what it was until I couldn't identify what had happened.

I hope you (& I) never have to become 'good' at it, because that means it happens lots .

Is your DD medicated?

Original poster
trace2 · 16/01/2009 15:53

thank you no shes not medicated she under neruo but she been having a diffrent thing happen since a week old where she goes stiff in a banana shape lasting up to 3 days or lasting just2 hours they no idea whats happing with her then she started with the drop attacks ( well i didnt know till nurse saw her what they were) and now this i just dont know

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5inthebed · 16/01/2009 16:50

Bless both of you.I would have froze is the same happened to any of my children, its perfecctly human.

How is she now? How are you feeling?

Woooozle100 · 16/01/2009 16:59

aw trace ditto the advise about not being hard on yrself. I've done exactly the same as you - one occasion was early hours of christmas day last year. We didn't take her cos we didn't want to spend christmas day in hospital. Felt really guilty after that and when she's done it since have called ambulance but have then felt guilty about wasting their time cos by time ambulance has arrives she's ok. I'm always so uncertain about it all too - like I think she may possibly have had some kind of fit, perhaps... when its blatant really that is what's going on

BriocheDoree · 16/01/2009 17:25

Oh Trace amd so for you because you and Chloe (and DS) seem to be having a tough time. Also, seizures are scary! (As a teenager I was freaked out for weeks by the dog having one and that's hardly on the same scale at all!) Most of us would be terrified by our DC having one, particularly first time. Hope for both your sakes this was a one-off...

Original poster
trace2 · 16/01/2009 17:31

thank you all am very tearry today where chloes seams fine after the long sleep this morning ! infact shes hyper now, but just found spots on her tummy maybe coming down with some thing to set it off but thank you all for the surport

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sarah293 · 16/01/2009 17:35

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Original poster
trace2 · 16/01/2009 17:38

oh riven i dont want to get used to them i still was to belive she was shivering ( even though i know she want)

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sarah293 · 16/01/2009 17:40

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Original poster
trace2 · 16/01/2009 17:42

iv not rang them, told nurse to tell them am scared at getting shouted at i just feel usless

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sarah293 · 16/01/2009 17:44

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feelingbetter · 16/01/2009 19:58

Is there something in the air, do you reckon?

If its any consolation, we dithered and faffed like idiots too. Thankfully we have direct access to the childrens hospital so I was able to take DS straight on Monday night. I was on the phone to them as the seizure stopped (after 3 mins) and they said I could call an ambulance anyway, if we were too shaken to drive. We didn't as its only 10 mins away and we were OK.

You do need to ring dickhead neuro though. We had new meds the next day. Also, he needs to actually do something now and if he doesn't - demand a second opinion. Given that he has dismissed every concern you and DDs paed have had, he's not really Mr. approachable, is he? I'm not surprised you don't want to speak to him.

It was terrifying for us, so I know how you feel . But DS has definitely recovered and there has been no repeats (as yet! fingers crossed) and, just the next day, I felt pretty OK about it.

Hug for you and a big kiss to DD from us xx

Original poster
trace2 · 16/01/2009 20:23

thank you all once again even though your all going through your own s@it you still help me!

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alfiemama · 16/01/2009 21:41

I honestly don't know how you all do it, you are all amazing having to deal with fits and seizures. You should be proud of yourself, and I genuinely mean that. You make me feel humble.

sarah293 · 17/01/2009 09:06

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feelingbetter · 17/01/2009 12:22

I agree.
When DS was only a 3 weeks old and we discussed his brain damage with the doctors they told us he had 50% chance of epilepsy and 50% chance of blindness. I can remember thinking at the time 'if we have to have one, let it be epilepsy coz at least there are treatments for that' How naive was I? I knew so little.

Now that we have a bit of both, I would trade DSs limited vision for him to be free of epilepsy. His little brain has been through enough and watching him fight to progress, only to see it set back by the next seizure crisis or horrible drug is bloody heartbreaking.

saint2shoes · 17/01/2009 12:25

trace, your reaction was norma, I used to go into total shock when dd had a fit, but as time went on I took control. give yourself time,

fatzak · 17/01/2009 13:21

As all the other say Trace, your reaction was so normal. In the first year of DS having his night time seizures I daren't go in - I used to hear him and scream at DH to wake up and go in to him I think it was a reaction to having found him having a seizure for the first time and the shock of it. I can just about cope with it now - thankfully his huge scary ones are controlled at the moment and I can cope with his partial ramblings and fixed eyes.

Have an appt by the way Trace at Sheffield for first week in Feb for his 5 day video telemetry. Any advise anyone on how to keep a very active five year old entertained for five days in one room hooked up to the EEG machine. It is going to be a nightmare - he only has seizures in his sleep so there with be sod all to see during the day.

sarah293 · 17/01/2009 18:02

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fatzak · 17/01/2009 21:14

That's a relief Riven. I can't imagine how bored he is going to get. Once the novelty of on tap TV has worn off he will be like a caged lion Originally they said it would be three days, now suddenly it is five. Nothing has changed with him and as I said he only has seizures duing his sleep, so I am hoping that if they get some good footage in the first few nights we might get let out early!

sarah293 · 18/01/2009 09:11

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Original poster
trace2 · 18/01/2009 17:50

thank you all once again as i say got used to her postures now i think it was cos this was diffrent

fatzak chloe did a 3 day when she was a few months old tbh we hated that ward but the nurses was nice! i would take him a walk through day to theres the museam across road and the park. shame we dont have app at thattime i could have poped in to see you? we are going to have to meet soon

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