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Another fit-still no diagnosis or plan of action is this normal?

(7 Posts)
used2bthin Mon 12-Sep-11 15:12:37

DD has had a few funny turns and three weeks ago had one which the neurologist said is the only one he would call a definate epileptic seizure (the other funny turns could be more to do with a seperate condition she has).

The three weeks ago one was a focal seizure a doctor told me today. And it wa sin the middle of the night which was consistant with the eeg she has had which indicated benign rolandic epilepsy or the possiblity of it.

Today was different, I was getting her ready for school and she was tired from a bad nights sleep and said I poorly. She then lay on the floor, went white and started seemingly to lose consciousness, then started making a choking noise and her eyes were flicking left to right quite quickly.

I panicked and called an ambulance and she was asleep quite heavily by the time they came then sort of woke up and sleepily smiled at them. At hospital she was drowsey but ok and kept saying she wanted to play then saying no not better yet and lying down and being sleepy again. This went on a few hours during which she looked really pale and hadnt eaten or drank all day. She then recovered and so they let us home but my worry is this could happen any time and other than being told to ring an ambulance if it lasts more than five mins and to fil it, I feel unprepared.

So is this the normal thing to just let them fit, then sleep it off? I am worried about how much school she will end up missing and that I will miss a fit int he night. Talking of which they said let her sleep in with me and dp if poss is this also the usual advice?Its taken months to get her staying in bed!

pedalpants Mon 12-Sep-11 15:46:50

oh dear, Im sorry you are having such a rubbish time. I think you should try and contact the health professional you most trust to talk it through. i know you are waiting on MRI (I think?).

I think it is good she was able to warn you about what was happening.

I think it is a bit odd they are recommending you let her sleep in with you? especially if she's not requesting it. why not sleep in her room on a air bed for a little while if it might make you feel better. then it is easier to slip away!

we were never recommended this even though DS had lots of night 'episodes'. Our rooms are v. close together and I always wake at the slightest thing so I felt fairly confident I wouldn't miss anything.

so sorry you've had a bad day.

used2bthin Mon 12-Sep-11 16:46:53

Thankyou and yes we are waiting for an MRI so it is not as if they are just not doing anything but it feels a bit scary for them to say just let her sleep it off iyswim. Especially as, with her other condtion, lethargy is a warning sign that things are not right so ordinarily I'd be increaseing her meds or even injecting her if I couldnt wake her.

Because of her condition I slept on a mattress on the floor in her room for ages, in fact she was 16mo before I moved out into my room! But that was in adifferent house and in this one, like yours,the rooms are so close together I am not sure it would make a difference as I would hear anyway especially as she wakes quite a bit and also likes to have both doors open.

It is good she can warn me isn't it? I am pleasd as her language issues have made that impossible till recently. Also, like last time, she was clingy in the rn up to it so I think she senses it is about to happen and if I can get used to this I could be able to tell too.

Not sure what to do about school tomorrow as it seems wrong to send her but she cant keep missing it . I also worry about what would happen if this starts happening a lot. But maybe it is just due to the stress of a new school etc.

madwomanintheattic Mon 12-Sep-11 16:56:33

stress, being tired, unwell etc can all increase szs if you have an underlying condition. the being sleepy after a sz is really really normal btw and not something you need to be worried about (trickier for you because it's a warning symptom for her other condition, but not in itself unusual after sz activity).

it is unfortunately normal to have to wait for testing and dx. the profs have told you what would indicate an emergency situation and given directions what to do in that instance - it's really tough to deal with and very stressful for you, but fine from a clinical pov. sad

when's your mri? is it possible for you to see the specialist regarding her other condition to discuss the sz activity? it might be helpful to discuss how to differentiate between post-sz sleepiness and the more worrying symptom requiring medical intervention?

it is good that she gets warning and can communicate it to you. that's fantastic. has she started any new meds which could be a trigger btw? i do know a little boy who has szs triggered by some meds - it does make prescribing tricky!

growlybear Mon 12-Sep-11 18:13:13

Hi used2bthin so sorry you have had such a rubbish day.Unfortunately this seems to be the way.I hate the lets wait and see approach too.It is good that your dd can sense when something is about to happen.My dd can't tell me but i can sense it by her overall behaviour.Is it possible to speak to your neurologist at all thats what i usually do if things change.x

used2bthin Mon 12-Sep-11 18:14:29

hi madwomanintheattic, thank you that does make sense and I can see that they can't check her every time it happens and I think I do need to speak to her endocrine dr again. They seem to base a lot on me knowing somehow that it is a situation due to her being unwell and so needing intervention and having had a seizure. Which I guess I probably will somehow know but big worry if I didn't.

The dr on duty today didn't know so called the neurologist back and he said no need to double dose as long as she falls into normal sleep and was not unwell before. Scary stuff but I deal with the conditon now so I expect this will become routine too.

The MRI is oct so not long. No new meds although I THINK her movecol says something abot epilepsy so will check taht and her steroids as the dose of one has been recently adjusted.

SWANUK Mon 03-Oct-11 20:12:09

Hi all, my name is lauren and i am the project coordinator for SWAN UK which is a support project for families with children with undiagnosed genetic conditions / who are going through the process of diagnosis. If you would like to be able to chat to other families in similar situations to you and access information about genetics please do come and find us on facebook under SWANchildrenUK or check out our blog www.swanuk.wordpress.com. You can also contact me directly on SWAN@geneticalliance.org.uk or 0207 7043141.Take care and good luck, Lauren

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