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.

Justkeepingswimming I got mine through the same charity I would imagine so our children must have similar conditions (charity initials DG ? ).

@flapjackfairy oh I wonder? The charity initials of our one would be DS though.

Oh maybe not then but always nice to connect with other parents with children with severe epilepsy syndromes . X

I also gave sleep seizures as well as psychic seizures (simple partials) which I stay conscious for. My epilepsy is TLE.

These do cause me to act strangely without losing any consciousness, I get a strange feeling in my tummy like a rush and a rising to my head/see stars/don’t feel in my body. It is not at all an unpleasant feeling (just inconvenient) quite the opposite really, it feels like a roller coaster, so please don’t worry. Ask her how she’s feeling when she zones out, it might help you eliminate this as they may ask and some neurologists still call these auras.

Best of luck with her - just to add that for her first seizure she should be seen by a neurologist within a set time according to the epilepsy pathway, so you can call pals if they give you a date for an appt that is unacceptable.

OP, lots of love to you, seizures are so frightening, especially when they first happen. DD (10) had her first aged 4, on waking, while staying at my mum's and unfortunately was on the stairs at the time so she fell and ended up being blue-lighted to A&E, but luckily turned out fine. She was initially seen by a neurologist there (it was a head-trauma specialist centre), and then referred to a paediatric neurologist, though that may not have been until after her next seizure about 18 months later.

She had a few scans on her brain which didn't find anything, and they also tested her heart after two of them, as sometimes heart issues can cause seizures, but those have been clear.

Basically, she has now had one seizure aged 4, then when 6, then just after 8th birthday, and one this summer a month after her 10th birthday. Other than the last one, which happened at lunchtime, they have all been on waking. After the 3rd seizure she was diagnosed with probable Benign Epilepsy with Centrotemporal Spikes (BECTS), which is called benign as it doesn't do any lasting harm and tends to be grown out of after age 14. So that's a possibility for your daughter, but it's hard to tell on only one seizure. DD's are getting further apart each time, so we hope she will only experience 1 or 2 more at most before they stop, and hopefully only waking (apparently it's usual for most seizures in this condition to be nighttime/waking).

We have occasional follow ups with local paediatric neuro consultant and the epilepsy nurse, who have both been very helpful.

Hi OP, sorry your going through this. My daughter has just been diagnosed with epilepsy. It is so scary but hopefully once you have a hospital appointment you'll get the right support.
All of my DD results were normal she has had a sleep eeg and mri. Which although it isn't helpful In some ways (but so happy it wasn't anything ) the treatment is exactly the same. The aim is to be seizure free for 2 years. DD epilepsy nurse is great and a charity called young epilepsy are great too

Also I was advised by the epilepsy nurse not to get any heart rate monitors etc as these don't always pick up seizures or it may not be a seizure and give you unnecessary stress. I was advised on getting a epilepsy pillow which we did get

Sorry was just reading through your post definitely video if you can. With the first 2 seizures it was almost as if the doctors didn't believe our version of events but after seeing the video they diagnosed her with occipital focal seizures which I believe is not very common

It is true that heart rate monitors may not pick up seizures but what a sats monitor will do is tell you if your child stops breathing for whatever reason so that you can take action and prevent any disasters. My child is at high risk of SUDEP and I don't think he would be alive without a monitor . However he is a v severe case and as I said earlier op may not need that level of monitoring. A sats monitor can definitely give you peace of mind.

As @flapjackfairy said, we use the monitor as it will alarm if our sons oxygen levels drop. It has detected seizures on several occasions and I believe saved his life because of this. However, again, our son is also a severe case and his seizures do not stop without either intravenous medication and has previously been intubated. The reason most epilepsy nurses don't recommend them is because people become dependent and obsessed with them but the reality is you have to use it as a tool alongside other safety measures. Some of my son's seizures wouldn't pick up on it either but we co-sleep for this reason.

I would also personally rather be woken up 10 times a night to a false alarm than miss a potentially fatal seizure too. However, this is not relative to the Op, and I'm a bit touchy about people being told not get to a monitor when It discredits people's common sense and how useful they can be when used correctly.

Yes I think epilepsy is so individual. My DD holds her breath but also talks as she sees things and vomits quite aggressively so we would hear her during her seizures. We also co sleep ( she is in her own bed next to mine ) so we can keep an eye on her. Although the epilepsy nurse did mention a baby monitor all night but I find her being with me more reassuring

Talks first *

We were advised against monitors, as they may create false alarms and DDs seizures are not life-threatening.

My dc (8) had her first seizure this week, one side of her body looked like it was seizing, toes fully curled, hand clawed, but fully conscious lasting 30 seconds. She had a second identical one 30 minutes later. Lots of numbness in legs.

Still awaiting an mri and eeg so no diagnosis but since then she's had a couple of episodes where she hears voices and banging shortly after waking, usually at night about 15-30 minutes after falling asleep. Now connecting the dots, she's done this for years and wonder if this is a form of seizure. When it happens she will answer our questions but seems to be looking through us rather than at us. Sometimes she remembers them, other times not at all. We had put it down to sleepwalking.

Just bumping for any advice

Sorry @RonBurgundyspanpipe you're going through this. I empathise with your situation. Are all your daughter's seizures in sleep or after waking up? Although my daughter's seizures seem a bit different to your dc's she gets the visible seizures during sleep and a few early morning.

Thanks all for contributing to this thread. We finally got the diagnosis and it's "Benign Rolandic Epilepsy". The silver lining is that it's not permanent and children grow out of it in a few years time. For this reason it's called benign, but it doesn't feel benign at all when you see your loved ones experience this. Next step, we have to decide whether to medicate her.

Alfather, it must be a relief to get a diagnosis. We're in limbo at the moment and it's very stressful.

Most of her hallucination/aura-type episodes seem to happen around sleeping though the school have mentioned that it might have happened when she was very stressed. The classic-looking seizure was midday and not related to sleep.