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!!

Sorry for not coming back and seeing your DH’s question

I still have myoclonic spasms but not very often - perhaps once per week. I took the decision that I wanted to be able to work/go to uni etc, which in my case meant taking a medium sized dosage of meds which would reduce but not eradicate the glitches.

I take 1000mg of Keppra twice a day. By far the best of the different meds I’ve tried. If I went up to the next level, I would be seizure free but a bit too doped for my liking.

I can’t drive and my teens were spent only going clubbing during half terms/holidays so that I could have a couple of days at home to get over the strobes. My parents let me find my own path.

I drink alcohol on mums nights out or at big events when I need a push to get on the dance floor, but I don’t bother drinking when out with good mates as I am chatty enough not to need it and it is not often worth the payoff.

After years with NHS care, which involved always putting me on the cheapest oldest drugs with awful side effects I paid for one private consultation with a consultant. It was about £100 and best money I ever spent. He transferred me to his normal NHS list and put me on Keppra. He’s based at the Walton Nerological Hospital in Liverpool - I think he’s called Andrew McNichols but with have a Google and come back.

Dr Andrew Nicholson!!!

I had my first seizure at 14 - was put on medication at 16. After a couple of significant events when I didn't take my medication, I've been seizure free for 22 years but an EEG still shows abnormalities so I am still on medication. Similarly to other posters I was put on an old drug but latterly transferred to Keppra 1000mg per day. It gives me no side effects - the other one did - and I am happy on it. I drive and have a full licence.
If your daughter is found to have epilepsy, make sure she isn't prescribed Epilim/Sodium Valproate unless there is nothing else that works. New MHRA guidance states this must be followed.

My son is on Lamotrigine for his myoclonic seizures - this has been good for him and he has no side effects.

I was originally put on epilim when I was first diagnosed almost 18 years ago but then saw a different consultant who changed me over to lamotrigine. Been seizure free ever since and love my driving licence too much to consider coming off it.

Thanks all! I am sitting, waiting for the post, hoping an appointment comes through today. Otherwise there will be phone calls made! I think a week for an urgent referral is long enough!

No letter but the consultants meet this afternoon to discuss the referrals so I shall call back tomorrow!

Hope you get an appointment. Waiting is tough.

Called this morning - 9 week wait!!! For an urgent referral! So am searching for a private consultation. 😿😿

Is she still having symptoms?

If so just go to A&E when she next has an episode.it sounds too serious to leave for 9 weeks.

This isn't right at all- you don't need to go private. Ask to speak to the practice manager to ask why a child with unexplained seizures is being made to wait. What if it were a tumour etc? She should be seen and having investigations within 2 weeks.

I would expect the GP to phone straight through to the hospital to get her seen with the next couple of days. That is the correct course of action for this situation

Will call the practice manager and see what they say.
Thanks for being here guys xx

Aw I really feel for you... good luck!

Sorry the got in there by mistake. Was supposed to just be .

A nine week wait??!! That's insane! Although your DD isn't having T/C seizures (at least I hope she isn't; haven't read the entire thread), nine weeks of uncertainty and worry isn't fair on her or you or the rest of your family so maybe private is the way to go, at least for your peace of mind.

She's having myclonic (sp?) jerks, and a lot less since she's been off school - so they might be functional symptoms of her stress. But we have an appointment a week tomorrow as it needs to be sorted!

Went to see the practice manager and he thought 9 weeks wasn't too bad! But he did sympathise and as such didn't charge for the private referral!
He did say if things worsened we should see the GP again and ask for the consultants to reconsider so we are all scheduled to go to a private appointment a week tomorrow.

Hmm that's sounds utterly crap. It might be worth contacting PALS about this- I would imagine they would be horrified the GP thinks this is acceptable

Really confused now!
http://www.mumsnet.com/Talk/amiibeingunreasonable/3227594-To-question-my-DSs-epilepsy-diagnosis

Still waiting for consultant next Thursday ......

Morning folks! Up and ready to head to Bristol for the consultant!

Good luck.

I hope all goes well, and you get some answers for you and DD

Jeavons syndrome!
Needs a an ecg to confirm. Long journey home now. Thanks everyone xx

Glad you're getting some answers

She's on meds. EEG didn't show a thing so she needs and mri - going to see epilepsy team in August!