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.

Sounds to be like an epileptic absence

I would agree - absence seizure. My dh has a different form of epilepsy. It's worth getting checked out.

See your GP first. My DH gets seen by the Queen's Square people. Personally I wouldn't go private for the this.

Did you call the ambulance the 3rd time and it was the A&E doctor who said maybe psychiatric?

My daughters friend has this but got it aged around 10 - they said she would grow out of it but hasn't yet

Absolute untrue that you can't be aware during a seizure- I'm completely aware (if impaired and afraid.) It's the reason I initially kept my driving licence. Please persevere with the doctors I was experiencing seizures undiagnosed for 15 years before I saw a neurologist. He said I was textbook and my GP should've picked up on it. GPS are often underinformed on seizures if they don't look like the 'TV seizures' or tonic clinics

@Merryoldgoat

Did you call the ambulance the 3rd time and it was the A&E doctor who said maybe psychiatric?

No I didn’t because I didn’t know about it until after it has subsided as it happened in the shower, it was late and she was exhausted and I am a single parent to 3 kids. So after speaking to 111 we decided to see the GP the following morning. The third medical professional was seen at the GPS surgery, he was a locum GP I think as he’s not one of the regular crowd there.

Where do you live op? You can see the Portland hospital doc around the clock privately without a referral I believe

Also have someone in my family who has focal and absence seizures.

@Theworldisfullofgs

See your GP first. My DH gets seen by the Queen's Square people. Personally I wouldn't go private for the this.

I’ve been seen at the GP all three times. So far we have blood tests and a man who thinks she needs a psychiatrist. Can I ask why you wouldn’t go private? I’m not someone who has any experience with private healthcare. What is Queens Square?

Do you mean seconds or minutes? What you're describing does sound like an absence but they normally last seconds not minutes. Maybe it's possible for an absence to last 40 minutes but I would say it's very unusual. I'm just a parent of a child with epilepsy - not a neurologist, so hopefully you'll get more expert advice.

@Foxhasbigsocks

Where do you live op? You can see the Portland hospital doc around the clock privately without a referral I believe

South Wales, but if necessary I’ll travel.

There is a very kind paediatric neuro at the Portland actually - just remembered we saw her. I will find her name for you

Portland is in London but appreciate you want this sorted ASAP

@Flywheel

Do you mean seconds or minutes? What you're describing does sound like an absence but they normally last seconds not minutes. Maybe it's possible for an absence to last 40 minutes but I would say it's very unusual. I'm just a parent of a child with epilepsy - not a neurologist, so hopefully you'll get more expert advice.

Minutes. That’s what this doctor today said that it’s not usual for it to be that long.

This is who we saw
finder.hcahealthcare.co.uk/hca/specialist/dr_adelaida_martinez

She’s kind with kids and has a special interest in epilepsy.

I think a full private investigation for epilepsy could be very expensive as you might need eeg etc. But speaking to her might be a good way to find out what your next steps should be

I was going to say it sounds like my dad's absence seizures but his last a minute or two at the most.

If you're a self payer, you don't need a referral for your appointment. If you want your health insurance to pay, you need a referral.

Otherwise straight out ask your GP for. Neurology referral on NHS, sometimes they need to some directing!

Agree it sounds like absence seizures.

Queens Square refers to the national hospital of neurology and neurosurgery in London. They are a top hospital for rare neuro illnesses. You need a referral though. I had some work experience there over 2 decades ago. I think they accept private.

@Foxhasbigsocks

This is who we saw finder.hcahealthcare.co.uk/hca/specialist/dr_adelaida_martinez

She’s kind with kids and has a special interest in epilepsy.

Thank you! I will have a look

If your daughter has been taking recreational drugs this is something she needs to mention to the doctor- if she wouldn’t in your presence then that’s something to think about when you get an appointment.

That must be very worrying for you OP.

A typical ‘absence seizure’ is usually very brief, mostly under a minute and more commonly around 10 seconds.

Focal seizures can last longer however 15-40 minutes is very long. Some people can take a long time to recover from them but 40 minutes of just staring with no response at all would be unusual (not impossible) if that offers you any reassurance, and so would usually point more to what would be called a ‘non-epileptic’ event. This may be why the professionals have seen her so far have gone down the panic/psychiatric route. However, seizures and non-epileptic events can be very difficult to distinguish between even for experienced neurologists, and I’d want her to be checked out. Even if the original suspicions are correct she still needs a diagnosis and support as it can’t be nice for her or you. Definitely don’t be afraid to push for a referral from the GP.

In the mean time, keep a record of when they happen, how long they last, any trigger (e.g stress, tiredness, do they happen while doing anything in particular). When they happen look to see if there are any eye, mouth or limb movements for example. Did anything happen around the time they first started? These are all things that a neurologist may ask about.

Hope you get her sorted soon

@dane8

You could ring the surgery and pick a gp you like and thinks listens. Explain what’s happened last 3 times and ask can they do you a referral letter. They should do this, I’ve had many done in the past for different symptoms. You first need to find a neurologist you like the sound off at a hospital, most consultants from nhs hospitals do private consultation at private hospitals ie bupa, spire. Or ask gp do they know off any. I’ve always picked mine by online.

It’s cost anything from 200-300 pounds not sure about London prices.

Once you have letter from gp, your ok then to book private consultation and what day/time suits you. Usual within couple days.

Thank you, I’m going to ring again Monday and will ask. This is helpful.