Daughter's seizures

[Afather]

My 7 yr old daughter had a seizure 3 nights ago (first one as far as we know) in her sleep. Luckily we were still awake and rushed to her when we heard hiccup type noises from her room. She had her eyes open, but not conscious and was having a fit. I called emergency and just before the ambulance arrived (in 2 mins), she regained her consciousness. We went to the GP next day and are now awaiting for an appointment with the Neurology department. Since the first one, she's been sleeping with us and she had another one 4 hours ago in her sleep, but this time a smaller one lasting may be 30 seconds. And she responded to our talking and regained her consciousness soon

Apart from this, my daughter is generally healthy and full of beans with no prior medical history. This has upset and terrified me and my wife immensely. I have been googling a lot and a lot of results are about many different types of epilepsy. This has only increased my anxiety. I am looking for general advice/support from people who have personal experience/knowledge in this matter.

Some specific questions are:

1. The GP has referred to the neurology department. Shouldn't this be pediatric neurology instead? Not sure if I am doubting too much but there were some cockups at this clinic before.
2. Are there are any seizure alarm/detection/recording devices that you can vouch for. Also it may help us get some more sleep, instead of checking on her every hour or so.

Thanks for reading and any advice is greatly appreciated.

It most likely will be paediatric neurology they have revered to, an adult clinic would be unlikely to see her. Definitely worth calling the gp to chase the referal though and make sure they know she has had another one and you could mention it on the phone. If she has anymore, try and video it if you can as it's really helpful to drs when making diagnoses if they can see what happening during them. Also important if you can to time them.

I wouldn't recommend or know much about seizure alarms. I know nothing will stop you worrying but remember that the seizures she's had have all been short and stopped themselves with out you having to do anything, so even if she had one and you weren't there, it wouldn't have made a difference, if that makes sense. I know its almost impossible but step away from Google as there's so much I formation out there that will scare you and most of it won't apply to your daughter. While it could be the start of epilepsy needing treatment, it could be something she grows out of on her own, or any number of options in between.

If she has another seizure and you're at all worried another though, remember it's still ok to seek medical help, whether 999, a and e or ooh gp, even though you're waiting for an appointment.

I second videoing it! Clinicians will find this really helpful.

I don't have much advice, but having worked with children who have had seizures (I'm a primary school teacher) it seems that sometimes children do have unexplained seizures at this age. One little girl I worked with went through a few months of this, had all the tests and no epilepsy. I'm not sure what they concluded was the cause, but she's still a very healthy and happy little girl so hopefully that may offer a little reassurance for you! There can be various reasons for seizures, some scary and some remarkably mundane xx

Thanks @IwillrunIwillfly and @MochiBean.

Yes, I'll record it the next time it happens. We have an appointment next week with the neurology. Hopefully we will have a diagnosis. Although we had witnessed only 2, based on what my daughter said, looks like it happened on more occasions; mostly during sleep and some in the mornings just after she was awake, but still in bed. As it's happening more during sleep I am concerned about SUDEP. I presume the neurologist will prescribe tests to rule out infections and also do MRI/EEG?

Just posting if any mumsnetters have some wise words. We're struggling at the moment.

Just when I was taking solace in that the seizures are predictably happening within 90 mins of sleep and my daughter is coming out of it quickly once we started talking to her, something weird happened yesterday that completely shook us.

Yesterday, morning, my daughter was complaining that she's tired and wanted to go to bed. She never goes to bed during the day and is normally active and full of energy. As this is not normal I was guesssing she had a seizure that we didn't hear off during the previous night. Anyway I took her several times to her bed but she couldn't sleep and ended up coming downstairs. Around 5 PM she was complaining that she is dizzy and can't hear me well or breath well. Eventually I took her to bed around 7 PM. She was nodding off and keep waking up within a minute or two. She started saying that she's dying and after one episode of nodding off, she started smiling and chewing on her blanket. She searched for my hand and started sucking my finger. When I pulled it out, she started chewing her hand. Concerned that she might bite, I called her name a few times. My wife then took her downstairs. She was hyperactive and behaving strangely chewing anything that she layed her eyes on (even trying to chew the floor) and keep on saying that it's pizza-pizza. We gave her some fruits and she was chewing them vigorously. She couldn't even recognize our cat and was asking what's that moving thing. After an hour or so, I had enough and wanted to call emergency. My wife was strongly against it and she thought that it's just tiredness and we should not panick. We had a massive argument. Eventually my daughter came back to normalcy.

Not sure if the 5 PM event (dizziness, breathing and hearing difficulties) is a seizure and the rest of strangeness from 7 pm is an after effect (awake dream/delirium). Finally sge went to sleep at 1030 pm and within 10 mins had a minor seizure in sleep. This morning she feels normal althogh tired.

We have an appointment with the neurologist on Tuesday. I am dreading what;s next. Just 10 days ago my beautiful daughter was always healthy, active and funny and I feel our lives have turned upside-down :(

Oh you poor thing. I do hope you find some answers soon!

Some nasty virus's can have this effect too, I'm sure the neurologist will consider every possibility - they don't leave children's health to chance so I'm sure they won't stop looking until they find an answer.

If you are still worried about the 5pm incident, you could always call your GP and speak to them over the phone? If your wife doesn't want to take your daughter in, might be a way to help put your mind at rest and get some medical advice while you wait for your appointment x

A friend of DD (now 18) has epilepsy and when she was younger she used to behave very strangely before having a seizure. Not quite in the same way as your DD, but would scream if anyone went near her and would become hysterical.

I don't know if this is something heavily documented or not as she is my only 'experience' of epilepsy.

Hope you get it sorted soon, how scary.

And yes I agree re getting her checked out - why not call 111 and see what they say about the behavioural changes today?

Thanks @christmaschristmaschristmas and @MochiBean.

I really hope we get this sorted. It's unbearable to watch our little girl go through this. We live in holland and not sure what's the equivalent version of 111 here is. I'll call the GP in the morning.

@christmas, if you don't mind how long does your dd's friend has had this for and has she improved?

I think after the 5pm event I would have been calling the GP for advice, if the appointment you have is with a consultant for Tues then hopefully you will get some answers then. Benign Rolandic Epilepsy is what springs to mind for me but of course only a Doctor can be making these diagnosis and as a previous poster has said, there are some nasty viruses around. Video any further events as it really will help them and keep a diary of dates and times. Finally step away from Google. As parents we all want to be well informed and do the best for our children but reading about things like SUDEP will only send your anxieties through the roof.

Thanks @Polkadotdelight

Benign Rolandinc Epilepsy is what we were guessing until the Saturday event. Since Saturday, she's been very tired with mood swings, irritability and saying depressive things.

I tried several times to video her, but the seizure stops and she manages to wake up just before the video starts. Not sure if it's anything to do with the phone light.

Tomorrow is the appointment with the Child Neurologist. I am really hoping we will have some answers and a way forward to a successful treatment outcome.

I hope you get some answers tomorrow, sound really difficult for all.

Will you come back and let us know how the appointment goes please?

The neurologist thinks that it could be Benign Rolandic Epilepsy or Temporal lobe epilepsy, with BRE being most likely. We have EEG booked this Thursday. If it's BRE then EEG alone is sufficient for diagnosis. If EEG points to TLE or not conclusive then they'll do an MRI/blood tests etc. If it's BRE, at least we can take comfort that it is something that my daughter will grow out of it.

Overall, it was a positive atmosphere today with my daughter being less tired and in a normal mood. She's sleeping now and we're watching her on a baby monitor and touchwood there's no seizure.

Fingers crossed for her for Thursday.

I am very surprised that the ambulance crew did not take you straight to a&e. From there, they would usually do various tests to rule out any infection and do observation. The question on neurology will depend on if you have a specific pediatric neurology clinic or not but I imagine they will be seen by a pediatric consultant.

With regards to seizure monitoring, you could ask the hospital if they could loan you a saturation monitor to monitor her heart rate and oxygen levels overnight. They may or may not agree to this. My son has a rare form of epilepsy and we use one of these over night, we have our own now but in the beginning we were given one on loan until we could source our own through a charity.

Please push for the MRI regardless of the EEG.
Medications can help but sometimes a surgical option is necessary.
My husband developed a seizure disorder due to a caveroma.

FatFeministCow67SRBseperation you are pathetic.

Best of luck with everything op, it sounds like you're having a really tough time.

No experience to offer, but wishing your family all the very best, OP.

It's been 5 days now and there has been no visible seizures. She's done a few starings where she's kind of not present for about 5 seconds. We'll know the outcome of the EEG in 2 weeks. Though scared, I can't wait to know the outcome.

@Justkeepswimminglalala, what kind of saturation monitor you're using. Would appreciate if you could send the brand name or link etc.

@ budgetneeded, any reason why you suggest to push for the mri. I'll push for the mri regardless, though.

Haven't read all replies so if I am repeating others just ignore.
I have a 4 yr old with severe epilepsy and most of his seizures occur during the period of falling asleep, waking up and light phases of sleep. This is v common and our son has lots of seizures that are missed during the night. Seizures as you now know can take many forms and can result in v strange behaviours. Our child does a lot of chewing movements as well along with many different types of seizure.
Definitely keep a seizure diary and film as many episodes as you can. Your daughter will be extremely tired after seizures so let her rest when she needs to. We use a sats monitor to check our sons heart rate and oxygen levels whenever he is asleep as he us at high risk of SUDEP It lets us sleep better as we know any changes in breathing will be detected and we will be alerted immediately. I dread to think where we would be without it. I am not saying your situation warrants that level of monitoring but it might take the stress

Ps we use a Spectro 30 monitor. We bought it from pulmolink . They are uk based but may export. It really is worth its weight in gold.

The EEG won’t pick up anything structural like a cavernoma.

www.pulmolink.co.uk/collections/handheld-pulse-oximeters/products/spectro2-30-docking-station-combo-1

This Is the one wee use but we got it through a charity associated with our sons condition. There are cheaper ones on the website. I would be pushing for an MRI tbh, an EEG may not show anything. It is not a stand alone test for diagnosis but more for helping towards one.

I imagine @budgetneeded has suggested an MRI for the same reason as me, which is to rule out any brain abnormality such as a tumour. I'm not suggesting for a second it is that based on what you've said but its good to have it done to rule those things out. My son had his first seizure at 3.5 months old, waiting for an MRI was one of the worst parts but it was a relief when the results came back normal. Epilepsy alone is a clinical diagnosis based on presentation and history. One seizure alone doesn't mean she has epilepsy either. It was genetic testing that gave us our diagnosis for our little boy in the end.