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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:
woosey35 · 08/04/2018 17:52

Just read your thread, and firmly holding your hand. I was diagnosed epileptic while pregnant with dd1. It’s a scary diagnosis but actually once on medication, and adjusting to the new normal, things aren’t that bad.
Thinking of you all. It’s easy to pass these symptoms off as habit or tiredness etc. Don’t beat yourself up about it.
Still holding your hand...

Original poster
Mrspotter12 · 08/04/2018 17:57

Thanks all, got home and had food so all heading to bed for an early night.

She has been much better today and I managed to film some incidents, will try and get more tomorrow- it does seem to happen when she's just woken up.
She also had a better nights sleep last night.

As for tomorrow we still don't really know what to do for the best, a doctors appt at the gp's or a&e at the children's hospital......

OP posts:
joecormac · 08/04/2018 21:59

Dear OP

Not read entire thread so please ignore if irrelevant.

I developed my v mild version of epilepsy at this age. It started with my eyes, then when I was a bit older, also involved tiny tiny spasms in my limbs which appeared to be clumsiness to elderly relatives.

I was diagnosed after two years of ‘glitching’ (it was the 1980s, parents were not that on the ball). My diagnosis was juvenile myoclonic epilepsy but one specialist did use an alternative name - Janz??? It is worse if I haven’t slept but only really effects me when tired.

Good luck

joecormac · 08/04/2018 22:01

Ps some GPs used to call it ‘milk bottle’ epilepsy as it mainly occurs early in the morning and you can’t keep a grip on things until your brain gets used to being awake

woosey35 · 08/04/2018 22:07

Tiredness a big factor with me and my epilepsy too. As is hunger, thirst and stress.
Thinking of you OP

Original poster
Mrspotter12 · 09/04/2018 07:57

Thanks to everyone!
Just waiting for the gp surgery to open to get an appointment! Will update later!

OP posts:
Nelumbo · 09/04/2018 08:20

Yes, my son's epilepsy is triggered by tiredness and stress.
Good luck at the GP OP

Cantchooseaname · 09/04/2018 08:25

Seizures upon waking/ when changing sleep cycles are very common times.
Fingers crossed they can get you seen quickly and provide some reassurance.
In the meantime, maybe familiarise yourself with what to do if she has a ‘big’ seizure.

  • if she falls to the floor, make her safe. Move furniture/ things, not her.
  • time it. Seconds feel like hours.
  • call 999 for first seizure.
In all likeyhood it will never happen, but there are so many myths around how to deal with seizure. All the best.
Original poster
Mrspotter12 · 09/04/2018 08:29

Joecormac

Just told DH what you'd said and he was just wondering if it still affects you? If it does, do you take medication?

OP posts:
Original poster
Mrspotter12 · 09/04/2018 08:41

Another thought, could an accident / trauma escalate things? I ask because she was pushed into the swimming pool at 11pm on Monday night and then these major glitches started to be obvious.

OP posts:
Original poster
Mrspotter12 · 09/04/2018 08:43

Ok scratch that, she did it in our first day in Spain (again after very little sleep) but her dad thought it was due to wearing flip flops !

OP posts:
GoldenMcOldie · 09/04/2018 08:53

My Ds2 has Absence Epilepsy. He started - age four with abdominal migraine and odx eye movements. This progressed by age 6 to up to 100 small seizures per day. He would abruptly stop mid sentence and stare / slight tremor in his hands. He was diagnosed by a neurologist after an EEG and MRI.

It took a further 2 years of refining multiple medications to achieve remission. He has been in unmedicated remission for 3 years now.

It's scary but treatable. Please do show the doctor your video of the episodes and oush for a Paediatric Neuro referral.

Original poster
Mrspotter12 · 09/04/2018 12:47

Right, gp saw video and called them myclonic jerks but when he heard about school (she has been majorly bullied) he said that rather than Epilepsy they could be functional symptoms of the stress she's been under.
He's urgently referred her to a pediatrician but as she hasn't had a grand mal it's not going in today urgent.

OP posts:
InSpaceNooneCanHearYouScream · 09/04/2018 14:39

I'm not sure I'd be happy with that advice from the GP. I would have thought that progressive seizure- type symptoms would warrant fairly urgent investigations- these symptoms could have so many causes. If this were my child I would at least want EEG and MRI done within the next couple of weeks. And I would CERTAINLY be very dubious about trying to write this off as stress!

Original poster
Mrspotter12 · 09/04/2018 15:01

He was clear that he couldn't say and that she needs to see a peads specialist.
We are expecting her to be seen within two weeks and I will be phoning the paediatric dept. to get her on the cancellation list as well. To be honest I was so glad he agreed with us, so often you hear of gp's ignoring parents!

He gave us the same advice as you guys, supervised baths & road crossing and no swimming.

OP posts:
SindysHorse · 09/04/2018 15:08

Op, she needs an EEG pronto as some seizures denote heart irregularities. I'm trained in epilepsy and work within the field. I would be taking her to a&e. I really don't want to worry you but I think this warrants urgent attention.

RepealMay25th · 09/04/2018 15:27

Op, she needs an EEG pronto as some seizures denote heart irregularities. I'm trained in epilepsy and work within the field. I would be taking her to a&e. I really don't want to worry you but I think this warrants urgent attention

I really hope you are lying about your job because not only is an eeg not a first line test in epilepsy, its also really irresponsible to scaremonger in the way you did there.

SindysHorse · 09/04/2018 15:44

I'm not scare mongering Hmm
I meant ECG although an EEG is also likely.

RepealMay25th · 09/04/2018 15:45

eeg is likely an ecg is not. It's not usually indicated in epilepsy testing.

SindysHorse · 09/04/2018 15:50

Well it is where I live.

Charmatt · 09/04/2018 15:59

Does your DD have any other symptoms, eg, arms rising, head moving to one side. I think epilepsy is definitely a possibility but there are more than 40 types, and there can be subtle differences. I hope everything is ok on your trip home. Let your daughter sleep if she needs to, as that can help. Try to document the time of day that they happen and anything that may have contributed to it. These can help the investigation.
I was diagnosed with epilepsy at 14 - it was triggered by puberty in me. I have two types but they are both controlled by medication. My son also has epilepsy which are not inherited from me and he has three types, which are also controlled by medication.
If you have any questions, I am happy to help. I hope you have a positive outcome.

Charmatt · 09/04/2018 16:08

Sorry, I didn't read the whole thread(I thought I had!) . Because they happen in the morning, and show a pattern, if it is epilepsy, then it could be Juvenile Myoclonic Epilepsy, or Janz Syndrome. This is one of the types my son has. It can follow a pattern of several early on, and then then none for several hours, sometimes followed by some more before bed. It is not usually a diagnosis that a person grows out of.

Triggers are really important to identify - mine are lack of sleep and anxiety. My son's are more complex than that but we could demonstrate them by getting him to concentrate, usually by reading out loud.

It must be a worrying time for you, and I hope you gain some reassurances quickly.

hatscatsmats · 13/04/2018 19:58

Hi OP - how is your daughter doing? Have been thinking of you all & hope the appointment comes soon.

Original poster
Mrspotter12 · 13/04/2018 20:27

Still waiting on appointment- will phone on Monday if there is nothing in the post! She's been a bit jerky but is doing ok
❤️❤️

OP posts:
QueenofmyPrinces · 13/04/2018 23:31

Hi OP, an epilepsy sufferer here.

I had my first convulsive seizure when I was 16 but in hindsight I was having absence seizures from about the age of 11.

When I had my absence seizures I would pause whatever I was doing, I would stare into space, my eyes would be flickering and then as quick as it started it would stop again. I didn’t tell anyone about it because I didn’t think it was anything to worry about.

Moving on to my typical convulsive seizures, they would usually happen within an hour of waking up and apparently seizure activity upon waking is very common. I used to get warnings that I was going to have a seizure as my eyes would start rolling, or they’d feel like they were, and I just felt disconnected from reality.

I really hope everything is ok with your daughter.

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