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Original poster

Fainting and seizures in 7 year old

106 replies

30daysonly · 14/05/2017 15:40

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

OP posts:
furryelephant · 11/07/2017 21:13

Oh I can't even understand how horrible waiting must be for you SadWine
I'm a children's nurse and my experience with MRIs is that if anything really sinister I'd seen, it's likely you wouldn't have left the hospital or would have been called back within a couple of hours. I know that won't stop your worrying at all, but the longer they leave you waiting is usually a good thing in the long run as if there's anything bad, you hear very quickly (or should). Hope you're both doing okay Cake

MissSmiley · 17/07/2017 23:26

Did you get the results yet?
Hope you're coping ok OP.

Original poster
30daysonly · 19/07/2017 22:32

Thank you both Flowers

No news as yet. Spoke to the receptionist at the GP yesterday and she said there was nothing on the system yet but she would keep a note of dds name and call me as soon as they go on.

I've only just received the letter from the consultant app stating she has been referred for the scan!! So the wheels are turning pretty slowly.

OP posts:
furryelephant · 20/07/2017 08:48

Oh that must be so frustrating for you SadI do stand by the saying that no news is good news! Flowers and WineBrewCake

Original poster
30daysonly · 26/07/2017 21:20

Furry, you were right Smile

Her consultant phoned me yesterday and the scan was clear, so my panic has come down a few notches! Hopefully that rules out the worst possibilities.

No nearer to a diagnosis though. The Consultant wants to see her again in 6 weeks.

OP posts:
poweredbybread · 26/07/2017 21:58

My middle child has epilepsy and there was enough to see on an EEG to diagnose it ( I am a nurse so knew it as soon as I saw it ) my eldest also had a seizure a few times but has heart problems and it was cardiac related her EEG came back negative. My son is now well controlled on anticonvulsants. He has tonic clonic seizures but there are other kinds of epilepsy such as absence or petit mal that are less severe to observe. Try and write a list of questions when for when you get to see the paediatrician. I'm not sure how definitive EEGs are or if they are used as part of a diagnosis so going by the history as well; so what you have observed during the seizures.

poweredbybread · 26/07/2017 22:07

Sorry ended too soon. It's good that the scan has come back negative. You have been told that that the EEG is abnormal so it's possible she has epilepsy so probably best to still not let her bathe/ shower swim alone until you see consultant.

Frontstep · 26/07/2017 22:09

I have juvenile myoclonic epilepsy (developed when a young teenager but can begin sooner) which is particularly likely to cause morning seizures or seizures when tired. Does she have any jerky movements at other times? Lots of info online about it. Mine has been completely controlled with medication for years.

BarbarianMum · 27/07/2017 12:14

Just catching up with the thread. So pleased that the MRI showed nothing sinister.

Original poster
30daysonly · 20/08/2017 13:21

Hello all.

Dd fainted again today. I'm not sure if she lost consciousness, maybe for a second or two? And no fitting this time. She said she had the head pain and a buzzing noise in her ears before she fell.

Thanks for all your replies. Frontstep that is interesting as she is tired today, she had a long travel this weekend, I will look into that condition.

I'm going to phone our gp tomorrow to chase the consultant follow up app.

OP posts:
Giraffesonabigboat · 20/08/2017 13:30

Sorry to hear it's happened again. Hope you get some answers soon

Original poster
30daysonly · 20/08/2017 13:30

@Frontstep I've just done a bit of googling, and dd seems a bit young for juvenile myoclonic epilepsy, her first seizure was at 6.5 years old, she's now 7.5, but the rest seems to fit. Thanks for the info.

OP posts:
SouthernComforts · 20/08/2017 13:33

This reply has been deleted

Message withdrawn at poster's request.

Original poster
30daysonly · 30/08/2017 22:56

Hello again.

I feel like I'm going over the same things a million times but I can't sleep so thought I'd post.

I've booked dd in with our gp tomorrow. We are at the stage of 'good days' and 'bad days' now. A bad day looks like this:

8pm bed time
7.45 am dd wakes up tired with a headache
8 am eats breakfast after drink of milk and Calpol
8.15 dd has to lie on the floor from the pain
8.30 dose of ibuprofen
8.45 can get dressed
9.30 headache eases
1pm an hour in the park after lunch then dd is grey and tired
2-4pm on sofa
4.30 pm headache so repeat meds
7pm in bed

That was Sunday and Monday this week pretty much. Thats not the day of a healthy child is it? Tues and today were ok but dd is still shattered by tea time each day. I've brought bed time from 8pm to 7pm which is ridiculous in the summer holidays really. She's still tired every day.

OP posts:
ImperialBlether · 30/08/2017 23:02

I've just read this all the way through; I hadn't seen it when you first posted.

You must be very worried. All her tests came back negative, then? I think given what you say today I'd insist on an urgent appointment. I do hope everything's okay.

Original poster
30daysonly · 30/08/2017 23:08

Hi Imperial,

All the bloods she has had have been normal except her urea levels. She had a kidney ultrasound which was normal. MRI was normal and her EEG abnornal (but couldn't rule out epilepsy or confirm it).

I rang the booking line yesterday and they told me she is on the waiting list to see her consultant in October, so I've booked gp for tomorrow in the interim.

OP posts:
Blondienut · 30/08/2017 23:11

How distressing. It's time to shout very loud op. I would be keeping a diary of symptoms every day. Ring consultants secretary and see can you go back sooner. Whatever is causing this obviously needs to be sorted but also in the meantime your poor dd needs proper symptom control

notapizzaeater · 30/08/2017 23:16

Can you ring the consultants secretary and ask for a cancellation ?

Original poster
30daysonly · 30/08/2017 23:19

I have the Secretary's number, I will phone if the GP doesn't. Dd has been seen twice by a locum recently as they were emergency appointments, but I have specifically booked in with her GP who knows her full history for tomorrow.

OP posts:
Original poster
30daysonly · 30/08/2017 23:21

And thanks for the replies Flowers

OP posts:
Patchouli666 · 31/08/2017 11:03

My daughter had a period of seizures when she was doing her a-s levels. Went to the GP I like the most at our practice and he said he'd refer her her urgently to the Epilepsy Specialist Nurse Clinic at our hospital. Got the referral in a week ( he called and left a message leaving my number and the receptionist called me that day.). If you google ' epilepsy clinic or epilepsy specialist nurse with your nearby hospitals ( and you may have to try all of them as they tend to be only one per area due to cuts and hospital specialties) and then go to your GP and say you want an urgent referral to said clinic. also if you google her current consultant, what does it say his specialisms are? Is he the best consultant for her?

So sorry you are dealing with this, but you are right, it's not s great life for a 7 year old. She needs medicating at small doses not just being left till October on painkillers. Not good enough at all. Don't be afraid of the system and the consultant getting pissed off that you've pushed for a different route. You've only got your child to think about, he'd be the same if it were his.

moosemama · 18/09/2017 22:57

It's a long shot, but I noticed your dd has head pain and buzzing in her ears before she collapses. I have Postural Orthostatic Tachycardia Syndrome (POTS) and those are two of my pre-syncope symptoms and are very common in POTS. Some people also appear to fit when they collapse with POTS, as they can jerk and appear unresponsive. In my case I can see and respond, but not speak. I have only had two collapses where I had the limb jerking though.

My 13 year old son is just going through tests for it too and he has the same symptoms. Almost all of his collapses are either when he first gets out of bed or within a short time of getting up in the morning.

Might be worth getting someone to do an active stand test with her to see if her heart rate increases excessively and stays up when she goes from lying to standing.

You may be told that POTS starts in the teenage years, but mine started when I was 7 and I know of several other people who started at a similar age. I was only diagnosed just under two years ago, having been tested for just about everything else they could think of, from epilepsy to strokes or tia's and even MS - and I am 47 now!

The good news is that, if it is POTS, it's horrid and has a negative impact on your life, but is not life threatening and there are lots of things that can be done to reduce symptoms, some of which are non-medical and easily done day to day at home. Once you learn about it and understand the mechanisms involved you can start putting strategies in place to manage it.

Whatever it is, I hope you get some answers and help for your dd soon.

moosemama · 18/09/2017 23:00

Almost forgot. Call the hospital, ask to speak to the consultant's secretary. Explain why your dd can't wait till October to be seem and ask them please can she be put on the list for a cancellation slot. Secretaries often have access to appointments that have been held back too.

Original poster
30daysonly · 31/10/2017 12:10

Hello all.

Quick update- dd has been much better recently in terms of headaches but the fainting and seizures have continued (roughly every 3 weeks)

Saw the consultant today who has ordered a 24 hour ECG. All recent blood tests have been normal.

Still no closer to a diagnosis but they seem to be looking into other causes than epilepsy.

OP posts:
youarenotkiddingme · 31/10/2017 17:31

My ds has been having odd episodes since 2014 that start very similar.
He gets a severe pain in his forehead. He tends to retch or actually vomit.
He has had worse episodes as it's gone on and the last one he was aware and then not aware and has a brief myoclonus.

He has had clear MRI and eeg. He also has nocturnal myoclonus too.

I've just posted in this section because he also has contractures of his muscles now too.

I wanted to hand hold because I know how scary it is to have a child who has these episodes and not know what they are Flowers

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