Partial seizures = hallucinations? at night?

[chmmr]

I have what may be a dumb question but i keep googling and finding different answers so i figured someone here might now.

Do partial seizures present as hallucinations sometimes? And if so have/can you experience them at night? My 3 year old daughter woke the other night at 2am super upset because "there is poo in my bed". No matter what we did or how many times we showed her, she was absolutely without a doubt convinced there was poop in her bed. She wound up coming to sleep in our room (which she never does) and the next morning she woke up and the first words out of her mouth were about the poop in her bed again.

If that was in fact a seizure would she remember it the next day if it was a simple partial?

 

[JaneC]

Hi there, yes absolutely, my daughter has had both visual (seen) and auditory (heard) hallucinations during simple partials and there are other types too, involving taste, smell etc.
Rosie's visual ones have taken place during the day but I don't see any reason why they wouldn't happen at night. She definitely has a permanent memory of what she has "seen", she can describe it the next day or months later, bearing in mind you don't lose consciousness during an SP.
With your daughter being so young, she perhaps finds it harder to distinguish between "real" and a hallucination but it sounds to me like a "normal" manifestation of a simple partial.

 

[Nakamova]

:agree:

You might find the link below helpful. It discusses features that can help to differentiate nocturnal seizures from nightmares.
http://www.gillettechildrens.org/uploads/general/Newsletter_PDFs/Vol20No2.pdf

 

[chmmr]

Hi there, yes absolutely, my daughter has had both visual (seen) and auditory (heard) hallucinations during simple partials and there are other types too, involving taste, smell etc.
Rosie's visual ones have taken place during the day but I don't see any reason why they wouldn't happen at night. She definitely has a permanent memory of what she has "seen", she can describe it the next day or months later, bearing in mind you don't lose consciousness during an SP.
With your daughter being so young, she perhaps finds it harder to distinguish between "real" and a hallucination but it sounds to me like a "normal" manifestation of a simple partial.

Thanks Jane, how old is your daughter? We have seen definite complex partials during the day that have impaired consciousness but being she is so young we don't know what happens right before and of course she doesn't remember what happened.

:agree:

You might find the link below helpful. It discusses features that can help to differentiate nocturnal seizures from nightmares.
http://www.gillettechildrens.org/uploads/general/Newsletter_PDFs/Vol20No2.pdf

Thanks Nakamova, ours is Temporal Lobe Epilepsy but assuming there is lots of similarities between TLE and FLE it definitely fits a seizure more than night terrors (i have seen night terrors in my other kids and this wasn't like that at all and was also much shorter. She was upset afterwards but it wasn't like she was still seeing or smelling or whatever triggered the idea that there was poop in her bed).

 

[JaneC]

Rosie is 17 - she was diagnosed when she was 11, after her first tonic-clonic. After going four and a half years without a seizure the simple partials appeared out of the blue last year and she is now on lamotrigine. Is your daughter on meds?

I really feel for you, I think it must be much harder dealing with E in a small child x

 

[chmmr]

Rosie is 17 - she was diagnosed when she was 11, after her first tonic-clonic. After going four and a half years without a seizure the simple partials appeared out of the blue last year and she is now on lamotrigine. Is your daughter on meds?

I really feel for you, I think it must be much harder dealing with E in a small child x

Not on meds right now, although she was on them for 8 months when she was an infant. She had her first seizure 6 days after we got home (she and her twin were preemies so they spent 22 days in the NICU first) at a month old-it was in our doctor's office and he immediately sent us back to the pediatrician at the hospital and we did an EEG that came back abnormal. Every EEG since as been abnormal, although the ones on meds were better than the ones off meds-We were struggling a bit with our current neuro (she said what i was seeing weren't seizures but then wouldn't take her off meds) so i asked for a second opinion (which in Canada basically means they transfer care especially when there is only one childrens hospital and it is 5 ours away from us as it is) and we got a neuro who is the head of the department at our childrens hospital who decided that i was the crazy one and that she wasn't having seizures. We did do week long monitoring combined with lumbar puncture and MRI and there were no seizures although the same epileptiform discharges they had seen since her first episode were still present so they decided to take her off meds (and we agreed). They basically said don't be a crazy head and look for things that aren't there so we had a couple more issues and maybe 2 eeg's after that that continued to be abnormal and then she was 18 months old and i tried really hard to ignore everything and anything in an effort to not be "the crazy mom" We did a "routine" EEG at 3 years old to follow up and it was thought that it would be normal and that she would have grown out of everything and we would move on but it was the worst EEG we have had with "almost continuous spikes" in the right posterior temporal lobe. Our pediatrician wanted to put her on meds right away but the same crazy neuro from before said that it could still be possible for a "normal" person to walk around with an EEG like that (i think she was trying to say it was a benign rolandic type possibly) so here we sit with no meds on "seizure watch". We saw our pediatrician a month ago and she confirmed that one episode we saw was definitely a complex partial (which shocked me), and she had one after that that i am confident about and now this one. So we are basically watching and waiting and deciding if she has enough seizures to warrant meds or not (we will have to choose between clobazam, lamotrigine, and carbamzepine if we do go on meds)

The hardest thing with a little kid is that they can't tell you about things like auras etc so you really have no idea what they are experiencing if it isn't obvious on the outside (like a complex partial that affects consciousness, or some muscle jerks etc).

Sorry to hear that Rosie started having the complex partials How has the lamotrigine been working for her? Any side effects?

 

[JaneC]

I wish doctors would trust parents' instincts more. They always think they know best (I don't mean just with E) when often it's the case that parents know their children best.

Sorry you as a family have been through all that. Maybe it was worth a try taking your daughter off meds to see what happened - we don't want our children taking them if they don't need them - but I do find it a bit strange given what her EEGs were saying.

So much is not clear-cut with E - there's a lot of weighing up involved. Rosie had two tonic-clonics six months apart in 2008 and neither we nor the doctors felt it was appropriate to put her on meds then. However, things started happening more regularly about 13 months ago, the simple partials, a tonic-clonic, and by the time she saw a neurologist both he and we felt it was time.

I did find the idea scary but it really hasn't been too bad. Rosie built up to what a was really a pretty small dose of lamotrigine - 75mg x2 a day - by the autumn but felt her concentration at school was being affected, so the epilepsy nurse said she could drop the night dose to 50. She feels she is doing much better at school but her seizure control is not quite what it was. Again it's that balancing thing.

I would say our experience of lamotrigine has been positive, considering the horror stories you read about AEDs, although of course it's a very individual thing. I totally empathise with going through that decision-making thing but I KNOW you will make the best decision for your daughter. Good luck and keep us up to date with what's happening x