Am I overreacting to think this needs a doctor's attention? (not emergency)

[rivercobbler]

My 17 year old daughter has just told me that she often has long periods of time (say an hour) where she'll have lots of five minute periods of deja vu accompanied by feeling scared and like she has to leave. I'm pretty sure that needs to be checked out by a Dr as it could be neurological, right? Combined with a long history of what she calls 'zoning out' and I have thought might be adhd (we are booked in for an adhd assessment) I'm thinking possible epilepsy. She thought I was mad and hates having attention drawn to herself but I think I need to make a Dr appointment.

I agree with you, it does sound like epilepsy.

My stepdaughter was experiencing a similar phenomena for a while (intrusive thoughts, zoning out, memory lapses). She did a quiz online and decided she had schizophrenia (!) which we really didn’t agree with but we started keeping a symptom diary and after about 6 months had a tonic clinic seizure, so went to A&E.

She was referred to a neurologist and while waiting had a second TC seizure so that sped up the wait a bit.

After various tests and scans she was diagnosed with epilepsy and is now on some quite heavy duty medications. She was almost 16 when the tonic clinic happened and apparently it’s not uncommon for girls to develop epilepsy at adolescence.

The ‘zoning out’ thing turned out to be Absence seizures: https://epilepsysociety.org.uk/about-epilepsy/epileptic-seizures/absence-seizures

Apparently starting with small symptoms that build up to a more obvious seizure is a common pattern in adolescents who develop epilepsy:

https://www.epilepsy.com/what-is-epilepsy/syndromes/juvenile-absence-epilepsy

I’d suggest requesting a referral and keeping a symptom diary - if she seems to be acting strangely or has an obvious seizure, make a video (I know, it feels like a terrible thing to be doing when a child has a seizure but the doctors really get a lot of useful info out of video evidence)

I don’t know if your daughter is interested in caffeinated drinks but it’s best to avoid them if you suspect epilepsy - I’m pretty sure my stepdaughter’s initial problems kicked off when she started drinking that awful Monster stuff, which is very trendy in her friend group (caffeine doesn’t cause epilepsy but it does seem to be connected with triggering seizures in some people https://www.epilepsy.com/connect/forum-archive/living-epilepsy-adults/epilepsy-and-energy-drinks-think-you-drink)

Hope you find some answers for your daughter’s struggles - we had no experience or knowledge about epilepsy before the Tonic Clonic so you are way ahead of us in that regard!

Thank you. I'll call the dr tomorrow.

Yes, I did an epilepsy course for work and remember learning that short episodes of deja vu and suddenly feeling scared/terror are symptoms of focal seizures.

I'd definitely get her checked out asap. If she does have epilepsy she could have a tonic clonic seizure at any time which is much more serious.

She definitely needs to see doctor. GP first bloods and general and then probably paeds neurologist.

My friend’s daughter had the zoning out feeling , which started in her early teens . I recall that she had tests which proved she had a type of epilepsy called Petit Mal .

Thanks, I've asked for a chat with a doctor today. She thinks I'm overreacting and has an important exam tomorrow, so I will talk to them first, then take her in next week.

DD1 was almost 16 when she had her first tonic clonic seizure. About 18 months earlier she had what was diagnosed at the time as fainting fits, but we now believe to be atonic seizures. She also has a history of clumsiness which may also be seizure activity

I’ve had some weird periods of deja vu over last 4 years and currently waiting for neuro appt. GP said possibly epilepsy or migraine. On googling it looks like temporal lobe epilepsy.
After the last one I blacked out and ended up in a&e/got a cT scan but nothing untoward showed thankfully. I had had disturbed sleep and v stressed due to a family matter. To add, when I came out of the black out I was very scared.
I tend to have this in clusters over a few days so first one 4 years ago was over a weekend and then they decreased in intensity, then I had a few on holiday in Oct 22 - they weren’t biggies but v fleeting, then the last in Nov 23.

Maybe you (and we!) are overreacting, maybe you aren’t - that’s for a doctor to decide!

Hope your DD got through her exam ok

The doctor was helpful - she took down everything I said, said that it could be nothing significant, but I should bring her in next week for a chat and basic neurological exam (the reflexes etc that they do at the GP all the time) and the doctor will write to neurology for advice. My dd is quite resistant to going to the Dr for various reasons so I will have to have a gentle chat with her over the weekend about this.

I had similar for a while and was scared it was epilepsy, in the end I worked out it was anxiety attacks, possibly mild ptsd. Obviously get her properly checked out but it may just be exam stress.

Seems like a reassuring response from your GP!

Epilepsy can be quite difficult to spot because the early/less well known symptoms can easily be mistaken for mental health or SEN conditions (eg my stepdaughter self diagnosing with schizophrenia via internet quiz🤦‍♀️)

This means Neurologists are well practiced at referring people who turn out to have non-epileptic symptoms onto a more appropriate service (a consultant referral might even help speed up the ADHD assessment you are waiting for).

Fingers crossed you can chivvy your DD along to the GP next week.

My son had several of the zoning out episodes as a teenager (a GP dismissed our concerns). He has just admitted that he also had a lot of Deja Vu episodes. Now in his late 20s he has started having Tonic Clonic Seizures (Grand Mal in the old days). They have completely stopped his life as he doesn't get an aura and we have no clue as to the trigger.

Get your daughter to sort it now and she may never get to the Tonic Clonic stage.

Just updating FYI and in case this is helpful for others. After a helpful GP appt, the Dr wrote to neuro for advice and guidance. She asked my dd to keep a symptom diary but we agreed that wouldn't be possible be according to my dd, this is all normal so she doesn't know what to look for or make a note of.

I then followed up by asking my daughter specific questions about any other 'odd' episodes (using information gleaned from epilepsy posts on various forums and NHS website) and she had a fair few peculiar symptoms like feeling like she's gone over a bump in road several times a day, feeling like the room is suddenly bigger or smaller, feeling floaty or spacey or not in her body, feeling like a wave has gone through her head, etc. Nothing muscular or visual. I sent her replies on to the Dr.

The neurology team have today advised that she have a routine EEG to see if the episodes are neurological.

Again, updating in case it is useful. The 20 minute EEG (with flashing lights for part of it) came back normal, and the consultant has said this, plus the frequency of her symptoms, indicates no diagnosis of epilepsy at present. They said just keep an eye on it, essentially. So I guess we proceed as normal.