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Original poster

Possible Epilepsy?

118 replies

Mrspotter12 · 06/04/2018 23:45

My Dd 12 has been "fluttering " her eyes for some time now. She stops what she's doing, her eyes roll back and her eyelids flutter. She is conscious, stays standing and can maintain a conversation. It lasts for a few minutes at most. She calls it "glitching ". We put it down to a habit she's developed.

This last week or so she has lost balance with these glitches. We thought she was just being clumsy .

This morning I turned around and she was sitting on the floor starting to cry, it had happened again. I tried to help her up but her legs wouldn't hold her. Within a minute or so it had all passed and she was fine.
The (additional) scary bit for me was the fact that she was at the top of concrete stairs, I dread to think what would have happened had she gone forwards! We were in Spain this morning and have started the drive back so should be home by early hours Sunday.

Does anyone have any thoughts or advice? Sorry for the length!!

OP posts:
MilkTwoSugarsThanks · 06/04/2018 23:49

Definitely need to get her checked out by a doctor, epilepsy or not. FWIW I know two girls who have gone through this and "grew out of it" and one who went on to develop epilepsy (me 🙄).

Original poster
Mrspotter12 · 06/04/2018 23:57

Thanks for that, I plan to take her to the gp on Monday but did, at one point, think about A&E at Folkestone as soon as we hit the UK! She's been fine the rest of today - but we have been in a car since lunchtime!

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Original poster
Mrspotter12 · 07/04/2018 09:17

Just happened a few times again crossing the road, luckily her dad had her hand so she didn't fall. She says she feels weird and scared and to be honest I feel terrified 😿

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Balancingact12 · 07/04/2018 09:20

If she’s never been assessed by a doctor about this she 100% needs to go today and ASAP!

Original poster
Mrspotter12 · 07/04/2018 09:27

We are in France!!!!! My French is terrible.

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Original poster
Mrspotter12 · 07/04/2018 09:44

Just been checking flights home and I can't find anything before tomorrow.

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jugglingmorethingsthanhands · 07/04/2018 09:53

If you drive will you get home quicker?

How is she now? Any other symptoms?
Are you somewhere with a hospital?

Can you ring 111 and get a call back from a GP or use push doctor to get an opinion?

Our GP is open Saturday is your home one open, if so could you ring your home GP surgery for advice?

diodati · 07/04/2018 09:58

It sounds very much like absence seizures. She should be assessed as soon as possible. Try not to panic; if it is epilepsy, there is excellent treatment available but before jumping to conclusions, do make an appointment with your GP, who should send her for tests.

Original poster
Mrspotter12 · 07/04/2018 10:01

We were going to take the back roads and stop overnight in France - but we are now on the motorway and heading for the tunnel as fast as is safe and legal.
No other symptoms. We have been talking and it seems to be happening just after waking up. She is also anxious about going back to school on Monday as there has been some bullying by other girls (the joys of year 7).

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Original poster
Mrspotter12 · 07/04/2018 10:02

My concern about 111 is that they won't call back as we are abroad.

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diodati · 07/04/2018 10:07

My DD was diagnosed with epilepsy 9 years ago. If I can help reassure you in any way, please PM me.Thanks

Original poster
Mrspotter12 · 07/04/2018 10:12

Diodati- I have no idea how to pm (am on my phone). I just feel worried. She has been assessed for adhd which was negative but she showed signs of communication issues.
The eye fluttering started last August - we thought it was a nervous habit.

To be honest I just want to take her straight to a&e as soon as we hit the UK. Would that be unreasonable? Tests via the doctor could take weeks .....

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cathyandclare · 07/04/2018 10:21

I think A and E in the view of new neurological symptoms and undiagnosed collapse in a child is absolutely sensible. It's what I would do in your circumstances. Hoe your journey is safe and trouble free.

jugglingmorethingsthanhands · 07/04/2018 10:23

Driving home sounds like a good plan & A&E for the symptoms you have described.

Do you have far to drive when you get to the UK?

Original poster
Mrspotter12 · 07/04/2018 10:32

We do, a further 6 hours or so. Should be back in the UK for about 10pm and home for about 4am

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Original poster
Mrspotter12 · 07/04/2018 10:33

Can I just say thanks to you all, i hope you all realise how hard I am holding your hands!

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jugglingmorethingsthanhands · 07/04/2018 10:40

Good luck for the drive, hopefully you will feel better on UK soil as if anything changes you can stop at any UK hospital.

do you have a good Children’s Hospital near home that you can go to?

Original poster
Mrspotter12 · 07/04/2018 10:48

We do thankfully - have an appointment there on Monday with DD2!

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Original poster
Mrspotter12 · 07/04/2018 12:07

Had a break a little while ago and all was ok. Eyes still fluttering but nothing worse. Eating Oreos and watching a DVD now!

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Balancingact12 · 07/04/2018 13:43

Maybe keep the brightness down on the screen incase it is epilepsy Flowers

RepealMay25th · 07/04/2018 13:48

Brightness of the screen won't make any difference, very few people with epilepsy are photosensitive, and even if they are its nothing to do with the brightness of a screen.

OP I wouldn't be rushing off to hospitals abroad, this is a long term issue and while it does need medical attention it is not an emergency that needs to be done this second.

DragonsAndCakes · 07/04/2018 13:48

My DD was diagnosed with a absence seizures last summer. She was seen fairly quickly because of a cancellation, but the original appointment was in six weeks. So if it is that there’s no drastic urgency to her being seen.
You can try and induce a seizure yourself to work out if it is that, using a technique of over breathing. The gp wasn’t taking me seriously until I explained we’d done that. If you google, overbreathing and diagnosis of absence seizures it should come up. It’s basiclly getting child to blow on a tissue for half a minute to a minute.

Original poster
Mrspotter12 · 07/04/2018 15:09

Thanks folks. We've had one more glitch while sitting in the car before lunch but all ok since. My concerns really are if it happens and she falls while out and about. Six weeks seems to be a lot my time, what if it isn't Epilepsy? We will try to bring one on as suggested by a pp - but when we get home and have had a sleep! 337 miles to go to Calais!

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Original poster
Mrspotter12 · 07/04/2018 16:07

Dragonsandcakes have tried to find the technique but am struggling. Can you post a link please?

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DragonsAndCakes · 07/04/2018 16:41

m.youtube.com/watch?v=D9iamiDlC64
Here’s a video.

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