Fainting and seizures in 7 year old

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Hi all.

In Nov 15 dd collapsed. I thought she had fainted although she wasn't pale/clammy. It took her a few minutes to fully come round and recover. Took her to GP.

In August 16 she collapsed again, this time she was fitting for around 10 seconds and conscious throughout. She complained of a pain in her head before collapsing. Took her to GP again, referred for bloods and ECG. All came back normal except urea was high on bloods - 8.4. Dr wrote to GP saying it was just fainting.

Last week dd collapsed again, same as the last episode, sharp head pain just before but the fitting was more severe and it took around 15 minutes for her to recover. Called 111 who sent an ambulance and was seen in a&e. All her observations were normal, then when she had her bloods taken she fainted soon after. Classic pale, grey, sweaty faint followed by another seizure.

Bloods came back high for urea again, so she has been referred for repeat bloods, an EEG and kidney ultrasound.

Dd drinks ok so I don't think she is dehydrated, but have been keeping an eye on her fluids since. Does anybody have any advice/experience/knowledge of these symptoms as I am very worried about her.

Thanks

Good luck OP. Hope you get some answers soon.

Thanks wonderwoo.

Hi youare, they do sound like they have similar symptoms, it's so worrying isn't it? What are the Drs doing for your ds at the moment?

Hi. This came up in active convos and, coincidentally, I was listening yesterday about surgery in epilepsy (see link at the end). Apologies if this is out of place as you don't yet have a firm diagnosis, let alone discussion about treatment options. Best wishes.

www.bbc.co.uk/programmes/b099yh8l

Ds has been referred to tertiary neurology. He's actually seeing a neuromuscular specialist but they episodes are mentioned in the referral.

We actually don't know what it is. Some people immediately think ds episodes are focal seizures but the epilepsy nurse and pead neuro don't.

I do think it's a little bit of a case of "signs and symptoms point to X but tests don't show up what we'd expect to see if it's X" so everyone's flummoxed!

Ds episodes also happen like your DDs. He'll have 3/4 in a month, 2/3 in a week and then nothing for months and then a 'big' one. Then some sporadic small ones and then a break when you think he's over it - then Bam - it starts again.

Hello.

Bit of a non update - dd has been discharged from her consultant in early Feb with no answers. She collapsed in December and again in February (1 week after discharge) I phoned the consultants secretary and she said Dr did not need to see her in clinic unless it happened again. So back to square one.

Sorry to hear she's not been well again and have not got answers.

We ended up going back and back and they decided they couldn't explain the consciousness thing but all the movements he has are myoclonus. (Muscle spasms)

As he also has muscle contractures and continuously tight muscles we can't stretch ds has been diagnosed with mild cerebral palsy.

So don't give up. Film everything and keep going back. I just kept emailing videos of ds for the attention of the neurology!

Thanks youare, I'm glad you got some answers in the end.

I need to get quicker with my phone, it happens so fast and the last 2 times in public so I'm explaining to worried onlookers as well as trying to help dd there's no time.

Me again. Dd had a long seizure this morning 2-3 minutes long. She was halfway down the stairs, I managed to sort of throw myself under her so she wasn't hurt.

I've updated her consultants secretary as he is on leave.

Updating here so I can look back at the timeline.. this was definitely the longest one she's had

Oh no did you manage to catch this on film?

Hey kidding.

Nope failed again! She fainted in her room, I was in the kitchen, then she was walking downstairs to tell me and shouted me as she felt dizzy. I just threw myself under her/rugby tackled her to break the fall so she was lying on top of me when she started seizing (luckily no-one walked past the window at this point 😂).

I tried to get her to respond to me but she couldn't, she snapped out of it about 4 times and kept saying Mum! Then seizing again it was awful.

How is your ds doing too?

Had a very bad headache and sickness a few weeks ago and then last week for the intense pain - laid on floor for 10 minutes but not very lucid.
Now though he is sleeping for 30 minutes at least afterwards as they exhaust him.

See neuro in Oct and neuromuscular specialist in Nov so hoping to move forward then.

Have they looked into something like Postural Orthostatic Tachycardia Syndrome or Reflex Anoxic Seizures? Fainting due to significant blood pressure drops and/or high heart rate can look like seizures.

Aw kidding. Hope you get some answers. Did you ask for the nuero referral or was it offered? We are at the GP tomorrow for a new referral back to peads as she was discharged in Feb.

Sunny I will look into those now thank you.

Sunny- this description of Reflex Anoxic Seizures is spot on:
"The eyes roll up into the head, the complexion becomes
deathly white, often blue around the mouth and under the eyes. The jaw will clench and the body will stiffen, sometimes the arms and legs will jerk."

However it says they are triggered by shock, fright, loud noises etc which doesn't fit.. and also she is never unconscious afterwards she comes round quickly afterwards.

Dd also had a 24 hour ECG which came back fairly normal, but she didn't faint or anything whilst it was on.

If 24 hr tape didn't show anything, can sometimes be worth doing one for a week. She's rather old for classic reflexic anoxic fits (mostly toddlers/pre-schoolers), but you can get something that looks similar from blips in the heart rhythm. Which would have a higher chance of showing up on a longer heart tracing...

The waking up fast just makes it feel a little bit less like epilepsy (though still could be). Definitely sounds like it's worth seeing paeds again.

For POTS diagnosis, there is a specific test called a tilt table test and also they usually do 7 day ECG recording.
I really hope you get answers.

We were given neuro referral years ago because he seemed to be having seizures. All the muscle spasms at night etc and blank episodes during the day.

He was under general peads anyway at that point due to chronic constipation and idiopathic anaphylaxis. She suggested neuro would be best to look at him and basically referred his case over. (Allergies pretty much died down at that point).

His neurologist referred him to tertiary neurology (neuromuscular) because of him being specialist to the muscle problems.

Neuromuscular neurologist referred to neuromuscular orthopaedic surgeon who said she diagnoses CP and will be putting that forward as her diagnosis.

This sounds so stressful for you. Has she had tests done for anaemia or even intolerances? I was a prolific fainter as a child (and still am now tbf) and suffered terrible migraines however they eased massively when diagnosed with coeliac disease?
It doesn’t explain the fits however although my husband has said that often when I faint my eyes role in the back of my head and a shake violently? May be worth a blood test if they haven’t done so?

Another post to suggest looking into POT's. I hope you get some answers soon.

If you google poor mans tilt test, you can do this at home to get an idea if POT's is a possibility.

Hi all, just an update to say we've seen the consultant again and he has ordered a sleep deprived EEG.

I totally forgot to mention POTS I'm annoyed with myself. I will mention it next time and I've got screenshots from here and the links ready.

We have out next neuro apt Tuesday. Will get results of brain and spine mri (doubt anything showed).

We've also narrowed down by me google imaging everything what the coloured spots he get look like! He gets them for 10-20 seconds and can't stop it.

They are the colour of the top pic but look like the bottom one

How's your DD been doing? Any other seizures?

How did the neuro app go @youarenotkiddingme? Could the coloured spots be some kind of migrane?

No more seizures here, sleep EEG booked for 31st.. might start a thread about that, we have to get up at 1am, dd is not gonna be happy.