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!!

So it's over two months since she first saw a GP and she still hasn't had an MRI? Time to push for that. If the EEG didn't show anything then they can't diagnose anything yet.

How is she now @Mrspotter12? Hope you got on with the epilepsy team okay.

If the EEG didn't show anything then they can't diagnose anything yet.

I've known lots of kids with definite epilepsy who had normal EEGs between fits. The history certainly makes you suspect Jeavons syndrome/eyelid myoclonia with absences.

nocool what I meant by that comment is without an MRI, how can they rule out causes other than epilepsy such as tumours? I didn't mean to imply that a normal EEG means you don't have epilepsy.

We have seen the nhs consultant and she has referred us for a cat scan of her head and another eeg ....

Good luck! What did the consultant say?

Tbh? Bugger all!!!

Oh

She's had an mri so we are waiting on her next appointment (in about 2 weeks) for results.

Just read your whole thread
I hope you get some answers quickly x

Hello read your whole thread. You've coped amazingly well especially with being in holiday. We're just starting on this journey too so looking for other mums and his they cope. Hope the results are good news for you. We have a MRI for our DS age 9 on Friday. It is such a worry.

Isn't it?!? Good luck with today's mri xx
Has your DS had any "major" episodes? Luckily since being on her tablets DDs symptoms have subsided and we've had nothing big since Easter!

That's good to know that things settled down for you. We had 3 tonic clonic seizures in 8 days but we're now on day 8 without one so hopefully medication is already working even though we're still getting up to the full dose. MRI is tomorrow so hope that is all ok.

Thought it was Friday yesterday - oops!

MRI done. Just awaiting results. Not sure when that might be. Next hospital appt is early Oct. so maybe then. Appt with nurse next week. I have lots of questions but not sure they will have answers!

My dd gets her results on Thursday!

Mri showed nothing. Eeg request hadn't been sent. Doc still on fence & nurse said to ignore her!!!!
Nurse coming to see dd & I in the week (I was having chemo so couldn't be at the appt.)

I know this thread is a few years old, just hoping everything is ok with you DD.

I commented earlier when my daughter was diagnosed with absences and general seizures but has since been diagnosed with Jeavons too. She had no epileptic seizures too.

I hope you got to the bottom of it.