Potential epilepsy but no follow up

[kirinm]

My DD has had three ‘episodes’ this year one of which resulted in her nearly drowning and needing resuscitation.

We are being seen by both cardiologists and neurologists but both are saying the episodes don’t fit with epilepsy (neurologists) or cardiac events (cardiologists).

As someone with a great deal of experience with epilepsy, I think it’s more likely epilepsy albeit not presenting in the usual way. She’s had an MRI and EEG both of which are normal and now we’ve basically been told that whilst we will have a follow up with neurology (in 5 months) they won’t do any further tests.

has anyone experienced the same? What did you do? I can’t just leave things as they are with her as she’s having these episodes close together now.

Cardiology are doing things but they think neurology should be too.

So her eeg didn’t show any abnormal activity? How do these episode present? What is making you believe that it is epilepsy. My Dd is epileptic so I share your worries.

I’m epileptic and have been for a long time so am really familiar with the recovery part of it. My sister and aunt also have it so our family history is full of it.

They aren’t like standard absence or tonic clinic seizures. She’s not collapsing or losing consciousness but totally unresponsive. The unresponsivenesa is lasting quite a long time - 5 or so minutes - but then the recovery is very similar to post tonic clonic. She was pulled from the water rigid which the cardio thinks is more likely a seizure. It’s basically the fact that the ‘seizures’ are not exactly the same every time that has lead the neurologists to say it’s likely to be her heart.

My children have a form of epilepsy which results in 'normal' EEGs, so on that basis alone I would want further investigations.

@ShallinloveDelight yes I think it’s really common for MRIs and EEGs to be clear. What further tests were done?

For mine, the epilepsy was genetic and the seizures more obvious, so the MRIs/EEGs were not needed for diagnosis in my case - so slightly different circumstances

The MRIs and EEGs will show up normal unless shes having a seizure at the time of the testing. Mine were the same, the only one that showed up any activity was a sleep deprived one. Have they tried or offered this?

She had a sleep one - she was given melatonin half way through. She wasn’t sleep deprived though.

I had to stay awake for 24 hours to do the sleep deprived one, probably difficult for a child to do, I dont know, I've only faced this as an adult. But like I said, these tests will only see activity when it happens, so they should be using other means too, like your family history etc.
Try and video her next time, if you haven't done so already.

My dd had a series of tonic clonic seizures as a toddler. She had a normal sleep deprived EEG and the MRI showed no structural causes. We had an epilepsy diagnosis from a recording of a seizure that I forwarded to the consultant, if was looked at by two consultants and an epilepsy nurse then was prescribed medication.
Can you get some cameras for your house to try and catch an episode? Or if you know the triggers try and be ready to film to get a recording?

In your shoes, I’d ask your GP for a second opinion with an epilepsy expert. You have the right to this.

I think we will do cameras but so far, excluding one, everything has happened outside the house.