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.

@Franklyfrost

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.

She hasn’t. I know all parents say this, but I’m 400% sure of it. She rarely goes out. When she does it’s to friends houses to do school work. She and I have a very open relationship and she would tell me. But I understand why you ask.

@stuckinarutatwork

My DB had very similar episodes and they were diagnosed as focal seizures. I don't want to alarm you but his were caused by a brain tumour. Please push to see a specialist.

This is my biggest concern tbh. Epilepsy or a psychiatric issue I can deal with and a slight delay in diagnosis probably isn’t a huge deal; but something like this is really worrying and why I’d rather pay than wait. Thank you. I hope your DB recovered x

@Caramellatteplease

I've also seen too many physical problems misdiagnosed as anxiety stress or psychological. Please do get onto Great Portland Street. Without them DS would never have got the tests (on the NHS) that conclusively proved the cause of his problems was physical and he would still be bouncing around CAMHS totally pointlessly and to his detriment physically, emotionally and financially. Keep fighting

I intend to ring them in the morning I think. Don’t know if anyone is there on a Saturday for this stuff, but I can only try. I don’t mind travelling. Thank you.

I haven' t read all of the thread but I am a private neurologist's secretary. Yes, it does sound like absence seizures. Yes, she does need to see a neurologist. I think there are competent ones in Cardiff. Not all private consultants also work for the NHS though will have done in the past. Even if they do, they can only switch to continue to see her under the NHS if your GP sends a referral letter to them addressed to their NHS address and then your daughter will get an NHS appt but it may take some time and she will not necessarily see that consultant there. In my part of London you don't get to see a named consultant in the NHS, you just get to see the one in that specialty that has the next available appt. She will need an MRI brain and an EEG to confirm the diagnosis.

PS As she is 17, she needs a paediatric neurologist. If you can't get one at The Portland, there are very good ones at Great Ormond St that see private patients.

Sounds similar to what I had, NEADS. Non epileptic attack disorder.

@meow1989

I wouldn't rule out the psychological route - has gp offered a referral? But I would want epilepsy or physical causes ruled out first - an eeg (probably a longer one rather than a quick snap shot) and scans if necessary. Does she have any other physical symptoms? Absolutely keep a diary and not circumstances around it happening too.

Definitely not ruling it out, she is an anxious bean and the shitness that is Camhs hasn’t helped. So definitely could be that. But as you say ruling out a physical issue also needs to happen I think. He did say he would do a psychiatry referral as urgent. I lm kicking myself that I didn’t also insist on a neuro, but I’m Welsh and retain a lot of my ‘doctor knows best’ upbringing unfortunately, but I need to put my big girl pants on and insist.

@mrsjoyfulprizeforraffiawork

PS As she is 17, she needs a paediatric neurologist. If you can't get one at The Portland, there are very good ones at Great Ormond St that see private patients.

Thank you! That’s really Informative and I’ll definitely be following up and insisting.

The doc around the clock service is open at Great Portland St tomorrow - more info here www.hcahealthcare.co.uk/facilities/the-portland-hospital/centres-and-teams/urgent-care-centre-for-children

They do a remote consultation by video service

Should be able to refer you on to Dr Martinez at the Portland if that’s what you want

Not an HCP myself but kids have been to the Portland a lot

@housemdwaswrong

Dr Margeurite Hill, at Sancta Maria saw me without a referral. Not sure of this has changed in the last few years.

I tried Sancta Maria and they won’t see her until she’s 18 unfortunately. Which is maddeningly close really (early September) and yet feels so far away!

Hi @Ineedaneurologist
I know how scared you are right now, and you're advocating for your DD, please keep pushing until you are heard.

My DD had episodes just before her 4th birthday and they were Reflex Annoxic Seisures. She had one a year for four years, and they just stopped.

Here is a link to STARS, a charity who are dedicated to Reflex Annoxic Seisures. www.heartrhythmalliance.org/stars/uk/reflex-anoxic-seizures-ras

I hope you get answers and help quickly from your GP.

[quote Foxhasbigsocks]The doc around the clock service is open at Great Portland St tomorrow - more info here www.hcahealthcare.co.uk/facilities/the-portland-hospital/centres-and-teams/urgent-care-centre-for-children[/quote]
Oh that’s perfect! At least I can get them to view the videos then. Thank you, youve been incredibly helpful.

@Ineedaneurologist no problem at all! I know what it’s like when you can’t get anyone to listen

My uncle has epileptic absences. The doctors didn't believe him until he had one in front of him. His problems were due to having an argument with a wall and losing.
Nowadays you can use your phone to record.

@Queenie8

Hi *@Ineedaneurologist* I know how scared you are right now, and you're advocating for your DD, please keep pushing until you are heard.

My DD had episodes just before her 4th birthday and they were Reflex Annoxic Seisures. She had one a year for four years, and they just stopped.

Here is a link to STARS, a charity who are dedicated to Reflex Annoxic Seisures. www.heartrhythmalliance.org/stars/uk/reflex-anoxic-seizures-ras

I hope you get answers and help quickly from your GP.

Thank you, I’m glad your DD is doing well now. I’ll check that out.

It does sound like absence seizures, she’ll need the referral to check if it’s epilepsy, or a remnant of a bump to the head, or anything else.
Have you videoed any of these episodes and you trying to get her attention? It can be hard to explain it in a way that doesn’t make it sound like she’s just ignoring you but video evidence will help you here. Also film if she’s doing anything with any other body parts - moving her hands, twitching her leg, anything else that seems involuntary.

Good luck! See a different GP if you’re able.

@Caramelsmadfuzzytail

My uncle has epileptic absences. The doctors didn't believe him until he had one in front of him. His problems were due to having an argument with a wall and losing. Nowadays you can use your phone to record.

Yes. God bless her quick thinking friend for videoing it!

Not read the whole thread but I’m a mum to a 5 year old with epilepsy. I can only pass on what his neurologist has told us.

Always record it, on your phone. Describing it afterwards to a neurologist gets v hazy. They can tell so much just by looking at a brief clip. She tells me to touch DS’s eye lids gently, does it bring him out of it?? Also as advised note time and other things (dribbling, chewing?). DS has not had lots of seizures but had a focal one in the shower too (long shower, hot water). May be unconnected but I’ve not let him get so hot (so far as I can control) since.

Last positive word if I can have it… he has taken a low epilim dose now for 18 months and there’s been nothing since. Completely may not be epilepsy related but lots of people do have it and head v v normal lives. Good luck x

Lead!

@Emmelina

It does sound like absence seizures, she’ll need the referral to check if it’s epilepsy, or a remnant of a bump to the head, or anything else. Have you videoed any of these episodes and you trying to get her attention? It can be hard to explain it in a way that doesn’t make it sound like she’s just ignoring you but video evidence will help you here. Also film if she’s doing anything with any other body parts - moving her hands, twitching her leg, anything else that seems involuntary.

Good luck! See a different GP if you’re able.

Yeah I have video evidence. In the first she’s awake her eyes are open but she’s not responding. By the second she was talking. Muttering responses but clearly not really aware. Last night she was talking to me, but it was clear she was confused and not with it. She kept saying she needed to do her skincare routine (which she always does after a shower) but then just sort of vaguely sitting there, I said ok do it then, ‘I can’t when you’re here’ was the reply. Which was odd. All the while she intermittently jerking her head, almost like a Hiccup, but no sound.

@carriebradshawwithlessshoes

Not read the whole thread but I’m a mum to a 5 year old with epilepsy. I can only pass on what his neurologist has told us.

Always record it, on your phone. Describing it afterwards to a neurologist gets v hazy. They can tell so much just by looking at a brief clip. She tells me to touch DS’s eye lids gently, does it bring him out of it?? Also as advised note time and other things (dribbling, chewing?). DS has not had lots of seizures but had a focal one in the shower too (long shower, hot water). May be unconnected but I’ve not let him get so hot (so far as I can control) since.

Last positive word if I can have it… he has taken a low epilim dose now for 18 months and there’s been nothing since. Completely may not be epilepsy related but lots of people do have it and head v v normal lives. Good luck x

Thank you, I’m glad your little one is doing well! It’s scary enough at her age, with a little one I can’t even imagine. X

I have tried to get appts with paediatric neurologists for patients at The Portland before but tbey only have one or two and it was not successful. Docaroundtheclock probably means paediatricians round the clock, not neurologists. Great Ormond St has been more successful. Look at www.gosh.ae

can I mention subclinical seizures - my dd2 use to get these - they can last hours not full absence but more foggy - she could also have a series of absences
However if she has never had them before I would want her to see a neurologists to have a full check up to see why this is happening