Any neurologists around? Shameless posting for traffic because I’m worried

[Ineedaneurologist]

I’ve changed names as this is very outing to people close to me.
My daughter is 17, 3 times since Monday she’s had these ‘episodes’ where she just stops responding, she’s not talking or looking at you but her eyes are open.
One of these episodes was about 15 mins, the other more like 40 and the one last night 20 or so, the first two were at school, the third at home but she was in the shower so I didn’t know until she was back ‘with it’
I’ve been to the GP with her all three times, the first time they had me see a nurse who said maybe a panic attack. Second time a doctor who said to get blood test done (booked for Monday) and If it happens again to ring 999. Third time today was a doctor who said he think she needs a psychiatric referral as she wouldn’t be aware during a seizure, but a 2 min google shows that to be the case always.

Friends of mine with children with epilepsy have seen the videos her friends took and think it looks like a focal seizure.

I want her to see a neurologist asap, but the private places I’ve contacted want a GP referral to do that. Am I allowed to ask for one? Are they allowed to refuse if they don’t want to give me one?

Some advice would be great because this is scary.

Thank you everyone. I am trying to respond to all the comments.

These definitely sound like absence seizures. I got treated for my seizures at Queen Square pretty quickly once I was referred, they were brilliant. They did all the right tests but ultimately I was sent to a psychiatrist as mine were psychosomatic, they were happening when I was extremely distressed. I'd ask to speak to a different GP, be firm and say you know that these are absence seizures and you need a neurology referral before she gets hurt.

If you’re in South Wales there is an excellent neuroscience centre in University Hospital Wales Cardiff, don’t need to travel to London.
Agree best to try GP for referral. Try Brain and Spine Foundation helpline 0808 808 10000 to talk through concerns with neuroscience nurses.

Definitely agree with PP about keeping a journal of what and when these happen.

You might find these videos useful to compare with your daughter's episodes. If definitely go back to the GP, show the video of DD and say you'd like an investigation. Have you said you think it might be epilepsy?

Sorry one zero too many in the phone number 0808 808 1000

@dane8

Oh forgot If you do see consultant private, once initial private consultation is over you can ask to be put on there nhs clinic if further test need doing So you only pay consultation and then transfer to there nhs list

This^^

@alongtimeagoandfaraway

If you’re in South Wales there is an excellent neuroscience centre in University Hospital Wales Cardiff, don’t need to travel to London. Agree best to try GP for referral. Try Brain and Spine Foundation helpline 0808 808 10000 to talk through concerns with neuroscience nurses.

Oh that’s very useful! Thank you. I will ring them.

Absolutely you can ask for a referral, you can also ask for a referral to an NHS neurologist but I appreciate that's likely to take longer and you want her to be seen asap.

In my experience (not neurology and may not be representative) they're generally more happy to do a private than an NHS referral.

Do you have private insurance which would cover ongoing care if needed?

My advice would be to try to find someone who does private work and NHS work at a hospital you'd like her to get ongoing care at (whether that be somewhere local/ convenient or a specialist centre) that can make it a lot easier if you need to switch into the NHS system for some reason.

@ProcrastinationStation3

Absolutely you can ask for a referral, you can also ask for a referral to an NHS neurologist but I appreciate that's likely to take longer and you want her to be seen asap.

In my experience (not neurology and may not be representative) they're generally more happy to do a private than an NHS referral.

Do you have private insurance which would cover ongoing care if needed?

My advice would be to try to find someone who does private work and NHS work at a hospital you'd like her to get ongoing care at (whether that be somewhere local/ convenient or a specialist centre) that can make it a lot easier if you need to switch into the NHS system for some reason.

No I don’t, so that’s helpful thanks

So this could be epileptic seizures, non epileptic (pseudoseizures) or something else.

Absence seizures do not typically last minutes and this points to non epileptic (conversion disorder/psychiatric) seizures.

20% of attendances at neurological clinics are for psychologically induced symptoms (seizures, odd sensory symptoms, weakness).

Can you check her internet history to see if she's been reading about absence seizures online? Does she have epileptic friends? She could be consciously or consciously imitating.

Has she been under any stress recently?

Get a referral to neurology but don't panic and don't convince yourself she's epileptic, especially as a doctor has already suggested it's psychological.

She should have had a neurology referral straight away, not good enough by the GP. Definitely go back, but beware that as she's a teenage girl you will likely have to fight to be taken seriously.

Is it possible she's faking it for attention?

I sounds like you havent witnessed any of these episodes but if you do it can be helpful to film it to help with diagnosis.

Sorry just seen you have video so that's helpful.

I have a neurological condition (MS) and yes a neurologist won’t see a patient without GP referral, which is annoying as certain other specialists will (ENT etc.). The waiting list to see a Neurologist is ridiculously long, so a private ref would be the way to go, usually around the £250 mark for an initial consultation, then around £220 per follow up, private blood tests if required are v. expensive, but usually a letter from a consultant asking GP to organise does suffice. MRI scans cost vary on the number of scans required, (often have head, cervical spine & whole spine,with or without contrast) I have had these done within private & nhs, I usually have these annually. All private neurologist hold NHS posts, so yes you can transfer to NHS under the same Neurologist, even if dx has been private. Good luck OP, I hope all turns out well for your DD

Not read the full thread but this is what I do during a seizure. I have temporal lobe epilepsy

If you're on FB check out epilepsy sucks run by an amazing lady from Wales. Lots of members on there would give help and support.
Also I'd be pushing for an EEG to be done asap

@lovethisjourneyforme

Definitely agree with PP about keeping a journal of what and when these happen.

Yes I am doing that, videos etc too.

I assume you would have already mentioned if it was the case but we are going through something similar with my son and I wondered if your daughter has autism? Epilepsy has now been ruled out for my son and we think it may be autistic catatonia.

How did she know she had one in the shower? What did she tell you about it- how she felt etc?

@AbstractHeart

Is it possible she's faking it for attention?

No way. She’s just not that way inclined. She is very anxious and has issues with panic attacks, so I can see where the doctor is coming from wondering if it’s mental health related, but there is no way it’s fake, the videos are very clearly not faked and if anything this is a kid who hates attention drawn to her and she is mortified it happened at school where people saw.

@Hoorahitsfriday

How did she know she had one in the shower? What did she tell you about it- how she felt etc?

She told me she was in the shower and felt like she was going into a day dream. So she sat on the floor of the shower and could hear her music playing but her arms and legs were numb, she got out by herself and then wandered into my room clearly disoriented and confused. Im estimating the time based on how long she was in there, and she said she was listening to an album she knows well and 4 of the songs ‘disappeared’. She was then sore and achy and sitting on the floor twitching.

@Ipadannie

If you're on FB check out epilepsy sucks run by an amazing lady from Wales. Lots of members on there would give help and support. Also I'd be pushing for an EEG to be done asap

Thank you I will!