AIBU to complain after A&E dismissed my son?

[SleeplessInWherever]

For the last week our son has developed a significant (and new) facial twitch, rapid blinking and rolling his eyes all the way back into his head. He’s completely not with it when it happens, and it distracts him to the extent he can’t go back to whatever he was doing before without prompting.

He’s profoundly autistic, and has limited communication. The little language he does have, he’s struggling to use - because the twitching is so distracting, and persistent.

Today we received a call from school asking us to collect, because he was distressed and was twitching almost every 30 seconds.

I called 111 and was advised he needed “urgent medical attention.” So urgent, that he couldn’t wait to see an out of hours doctor, because it wouldn’t be quick enough. So we went to A&E, which is a real battle for him usually anyway.

2hrs later, the doctor comes in and refuses to go anywhere near him. He stood at the door of the room, and said he’d come back soon. He then came back 45mins later and said there was nothing medically wrong, it was behavioural - take him home.

I repeated what 111 had told us, and told him this is not our son’s presentation of behaviour. He then said he sees children all the time, this is behavioural and is “just his autism,” so probably best to leave. We asked him to at least examine him, and he said “the child obviously won’t tolerate that.”

I expressed my concern that DS may have something more significant happening that is being ignored because of his level of need, and he just said “that’s not the case, there’s no medical cause.” Having not examined him.

So we left, with no answer or support whatsoever.

I don’t think I am, but would I BU to raise this as a formal complaint?

My mum had something like. Turned out to be Bells Palsy. She got put om pregabalin for it.
I'd not be happy at all & i'd contact PALS via email and phone call so you have a record of your complaint. x

This is called diagnostic overshadowing and is a cognitive bias where health professionals attribute any physical symptoms to a pre-existing diagnosis…..usually autism and/or learning disability, without taking a full history or doing a proper physical examination. 100% complain. And get him seen by a proper clinician.

Have you taken him back to A&E?

This sounds like it could be neurological. There is Martha’s rule which means if you’re not happy with the first opinion then you can seek a second opinion. Please take him back and advocate for your son, it’s not fair that they’ve not done anything to give you some answers.

Does he have a paediatrician?
It sounds like a seizure. Not a tonic clonic which is the kind you are probably thinking of.
Next time it happens video him. The GP will refer you if you don't already have access to a clinic.
If it lasts longer than 5 minutes call 999.

Martha’s rule hasn’t been rolled out to emergency departments yet I don’t think. It is available to access in lots of inpatient areas in lots of hospitals but not all areas. You’d need to check the specific hospital policy and where they are in the implementation process.

That isn’t quite what Martha’s rule is about, that’s for deteriorating patients becoming more unwell and only in some pilot site EDs.

i would be inclined to mention Oliver McGowan training though! That’s such disappointing “care”. I would go back and ask for a second opinion and I’d also make a PALS complaint

YANBU. That warrants a complaint.

You can return, state you have complained for being sent away. Take someone else with you to obviously take notes.

Diagnostic overshadowing and discrimination. Totally not on

Shocking. A really caring attitude, not. Yes complain, complain, complain. Totally unacceptable.

That was my thought too. I don't think its a twitch, from the description it sounds like he's seizing.

Ah okay, apologies.
Regardless, he needs to be properly reviewed.

Yes, complain. There is a big campaign about health staff listening to parents of autistic people due to their epic failures in care! Get videos of the twitching whilst calling an ambulance next time it happens. It sounds like a seizure.

Paedistrician here. i would go back to A and E and ask to see a paediatrician. Sounds like it could be tics as they are more common in ASD. They can flare with illness or various other reasons. However could also be seizures and i'd be suprised if they didn't at least consider that, observe your son, and maybe do some tests to exclude it. If you dont want to go back to A and E get GP to do a rapid referral. Hope he feels better x

Definitely sounds like seizures. Absolutely complain, but your ds needs seeing by someone. If it happens again over the weekend go back and don’t be fobbed off, insist on seeing the paediatric Dr on call.

does he have a temperature?
very odd behaviour.
is he under anyone at all?

Thank you for all of your responses!

I asked today re potentially absence seizures (?), and was just told no - it’s behaviour, and he’ll stop.

He doesn’t have a temp, his only other that we can pinpoint symptom is tiredness. There may be others but as he can’t communicate we’re stuck trying to work out what they could be.

He is under a paediatrician, and we’ve already got a GP appt on Monday - because of what had happened today at school we didn’t want to wait for that appt so took him.

Next steps (apart from the complaint) are GP Monday, also contact his paediatrician, and if all else fails we can access private. But candidly, it wouldn’t be us funding that so we’d do that last.

GP here . Agree with lovely paediatrician above.
This would be an urgent referral from me.
if you have accessible GP ask urgent appointment in next 2 days .. I am quite good at advocating strongly for people needing specialist review or take him ED and insist paediatric assessment. ? Is he under care of paediatrician then go ED at that hospital.
Also video episodes on cell. Best wishes and I hope your love.y son is helped soon.

I'm a GP. If I saw him in surgery I'd want him seen in ED or at the very least in a hot clinic within a couple of days. It could be behavioural but I don't know how anyone could say that for sure before even examining him and the ED doctor was very arrogant to treat you like that however sure he is of his diagnosis.

I would go back to A&E. Or a different one if that is possible and you would feel more comfortable.

As well as complaining, speaking to the GP and contacting the paed, does the hospital have a learning disability (and sometimes autism) liaison nurse? If so, contact them.

Does DS have a hospital passport?

I don’t believe that he does, which we definitely need to sort.

We have discussed taking him back, or elsewhere, but he gets so heightened in A&E and struggles to such an extent with the wait, that it’s always an absolute last resort for us. We’ve only been three times, ever. His first febrile seizure, 2 sprained ankles last year, and today.

After today’s experience we’re hesitant to take him back and distress him further, if we’re going to get nowhere by doing it. Really put off by the whole thing. He was so upset and I’m just not doing that to him again for no progress to be made.

I have just found the hospital’s whole list of Autism Liaison staff, by department - thank you!

I teach my students, if the parent or carer of a child (or anyone that cannot speak for themselves) with special needs has a concern, you take it seriously and you listen. They know their child better than anyone. If they say their child is not their normal self then believe it, and investigate it properly. Do not be fobbed off.

That's appalling I spent many years working as a special needs school nurse and by far the majority of my job was overseeing children with seizures, many of whom had very subtle signs and changes in behaviour (well documented and caught on EEGs) that were seizures. Seizures are a common comorbidity of autism so it's a brave (or arrogant) doctor to dismiss emergent symptoms as being "behavioural" I would be getting in contact with your regular paediatrician and seeing your gp. In the meantime record these episodes and keep a log noting how long they last/how frequent/and what he was doing prior to the symptoms starting. It may be nothing or it may be something, without further investigation it's pretty much impossible to be sure

Thank you. I did really take issue with the “I know children” response.

Great, you don’t know my child, and I’m telling you something’s up.

I think he assumed we were neurotic parents who were exaggerating or misreading something, when as I said above - we only took him because of the seriousness, A&E is an absolute last resort in our family because of the impact it has.

School have been really concerned, and I’m guessing this is why.

They’d emailed again before we left the hospital, with videos and a further description of what he’s been doing there etc.