Possible Epilepsy?

[Mrspotter12]

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!!

Sounds like absence seizures. Try and film one if possible.

How you doing OP? Hope the drive is going ok? How is your daughter feeling?

She had another one when we stopped, after a sleep again.

We are currently stuck in Paris traffic after getting lost!!!! Have just seen the top of the Eiffel Tower in the distance !!!!

She is a bit upset about it to be honest, I am trying really hard not to show my worry.

My DD (10) has epilepsy, we have just got out of hospital due to seizures in fact.

She has focal seizures and presentation includes eye fluttering, eye scrunching, bursting into tears, hysterical laughter, 'losing her legs' (as you describe, they just won't work), head hitting, mouth curling, twitching, limb juddering (this is very subtle and happens when she is absent, keep a close eye out for this), stiffness, anger, violence, wandering...

She can be fully with it when having a seizure or she can appear to be daydreaming or experiencing a bolt of emotion eg. Laughing inappropriately.

My advice is to record anything you can, any odd behaviour. This is the most useful thing you can do right now. Keep a diary from today, write everything down. A neurologist will need details to know what type of epilepsy they may be dealing with.

With it being a weekend when you get back, I'd go to A&E. Don't panic but get her seen as soon as you can. Tiredness will lower a seizure threshold so if it is epilepsy (IF- ahgain, don't panic) travelling may increase any seizures.

It does sound like seizure activity to me but a video would be invaluable to any medical professional.

Keep us posted, OP. Hope she's ok.

Just saw your most recent post. Waking and falling asleep are prime time for seizures here. If it keeps happening and she isn't coming round, if her breathing or colour changes, divert to a hospital wherever you are or call for help.

Must be very worrying for you.

My son has epilepsy I agree with the advice to try and record some of these episodes as it will help doctors to diagnose what it is rather than relying on a description.
Its very scary, hopefully you can get her seen as soon as possible

This isn't her, just found it on you tube. This is what she's been doing since August!!!!! Oh god 😿😿

sorry if this has been mentioned. I have absence seizures. If you can then film them. It can be hard to catch absences in front of a Dr so all the evidence is useful :)

Since August! Yikes.
Obviously from now on you need to make sure she isn’t crossing roads, swimming unsupervised etc. We were told to watch ours in the bath until her medication started working, which it did within a few weeks.

We thought it was a nervous habit as she isa sensitive soul and she clashes with her dad. I feel so crap now .....

You can watch her from now though.

Don't feel crap op. It is very hard to diagnose. There are many shades on the epilepsy scale. My dd got diagnosed when she was 4. She also suffers absence seizures but they were more difficult to diagnose as she was 4 and it was always put down to being 'dreamy'. I'd caution doing the over breathing test Tbh. I'd wait and get seen at hospital. They will take it seriously and do an EEG to see how the electrical action is in her brain. The worry with triggering them on your own is that they last a few mins. My daughter developed status status epilepticus and now I need to be careful and time any seizures as she struggles to bring herself out of them without medication. I'm not trying to scare you I just don't think it's wise to try and induce them on a person who hasn't had a diagnosis with no supervision. The nurses and neurologist at the hospital will be better able to advise and test. Sending hugs to you and your daughter it is a frightening thing when it first happens but it can be controlled.

Meant to say my daughter suffers absences and tonic clonic seizures so obviously these are different to your daughter but I just think trying to induce one by over breathing would be really reckless.

Thanks again everyone. I don't know about triggering one but I do know I'll be fuming her when she wakes up tomorrow morning!

Filming her!

Fair enough to warn about trying to induce the absences, I didn’t come across any sort of cautions when I was looking online and was pleased to be able to tell the dr, who was a bit dismissive until then. But obviously use your own judgement. (The neurologist and then the EEG practitioner also induced them, although obviously they are medical experts!)

The other question I was asked a lot was whether there was any family history. Might be worth having a think?

My second cousin has epilepsy, my dad had an unexplained seizure about 20 years ago and her paternal uncle mysteriously stopped driving for a few years!!!
We have stopped overnight at a hotel in Calais due to overtiredness and will continue our journey in the morning.

I am so glad you guys have been there for me today - thanks all!!!!

Just wondering if Epilepsy is a progressive thing? She started with the eye fluttering back in August and has only this week progressed loosing balance and legs going?

I came back to check up
on you* and your DD, MrsP*. By now you're probably home, maybe already having her looked at by a neurologist. I hope so! Please let us know! Meanwhile:

Just checking in for an update, hope your at the hospital and all is well.

Sent you a PM. Fingers crossed!

Oh, and filming your DD is a fantastic idea. My DD hates it when I do it but it's invaluable information for the neurologists and might spare her a few EEGs.

Seizures beget seizures, it's called neural kindling.
Please don't try to induce a seizure at home!
There's a really good chance of excellent control with medication.

Morning folks. We stayed at Calais last night and are at the train waiting to get on. She had a good nights sleep and have only had fluttering so far today.
I have filmed that but there was nothing like yesterday. She also complained fiercely about filming!!!! Hopefully she'll nap and I'll get something on film then!

How are you getting on? I hope you are nearly home.