To take my son to A&E on Monday

[PuppyKeep]

Deep breaths.

I know I'll get attacked for this, as A&E is for life/death emergencies, but my heart is breaking for my son and I must help him.

He's 13 and autistic. For several months, he has had extreme fatigue, gradually getting worse over time. He is losing weight rapidly and is now clinically underweight. He looks skeletal, sleeps all day and has chronic constipation, despite daily prescribed laxatives. When he finally has a poo, there is a lot of blood. He is in pain (lower stomach and bum) - I worry he's developing fistulas or worse. His mouth is full of ulcers. He has had blood tests which show hugely raised inflammation markers. We are waiting for a stool test. The community paediatrician strongly suspects Crohn's and has put in an urgent referral to the city hospital. The hospital estimate 4 weeks till he can be seen (despite the paediatrician pleading for him to be seen within days as he is so sick). 4 weeks! No treatment.

I phoned the hospital in desperation and asked if I took him to A&E could he get treatment. The nurse said he would not get the specialised treatment he needs over the weekend as the consultant has gone home, but we might be successful on a weekday before 5pm if we try A&E then.

My thinking is: help him through weekend as best as possible and then rush him in on Monday?

@PuppyKeep ive DMed you, please check xxx

Do you have an A@E attached to a children’s hospital, even if it’s not your local one? I know our children’s A&E has access to paediatric consultants out of hours who will come to A&E if needed. I’d take him there rather than a general hospital if possible.

Do you have any way of checking out that A&E dept for sensory overloading stuff before you take him? All autistic people are different but it's common to find A&E overstimulating and horrible.

It may turn out to be an uncomfortable day sitting around with no real help - that's a chance you're taking, that the A&E docs will conclude there's nothing for them to fix in an emergency dept and he needs to wait for the referral.

A same day GP appt with the aim of a referral to a children's ward is also a tactic with possibly less waiting.

How able is he to describe pain? Worth talking through with him in advance - there's a lot of content on social media of autistic people and doctors not communicating well with each other around the quality and severity of pain.

I don't have a sister otherwise I'd think you were mine as I had the exact same with my UC.

OP it's a lottery really, if you take him to A&E you may get him admitted to a gastro (or acute) ward. You may get a sympathetic consultant on call or in person who will order a colonoscopy/endoscopy/CT/MRI or all of the above which would get his diagnosis pretty quickly and onto treatment asap.

It is absolutely heartbreaking that you may also just get fobbed off, told to go home and speak to your GP, be told it's just IBS. I have everything crossed for you it's the former - only way you'll find out is to take him.

You can and should take him to A&E immediately for assessment. He may not see a paediatric gastroenterologist within 24 hours but will see a senior paediatrician, will have full access to medical care, and they will be able to get advice if required, and start initial diagnostics and treatment. I am a senior doctor and do not understand the advice given - if he is unwell the time of day doesn’t matter, and he sounds very unwell. There is no health system where you have 24/7 access to subspeciality care of all types directly, but there are mechanisms for getting input whenever required, and immediate care for an unwell person shouldn’t be delayed while awaiting it. I am not a paediatric gastroenterologist but could arrange initial tests for crohn’s in a teenager if needed, and then initial therapy.

If you do it, I wouldn't choose Monday. There will be a lot of post-weekend emergencies. I would take him on Tuesday.

Yes, it definitely is. And I hope you get the right treatment for your poor son. Stay strong, you are a fantastic mum.

OP I would take him if it's the RVI. They have a children's A&E up to the age of 16 and I've found them to be pretty good. DD also has autism (and load of other co-morbidities) and although she is in adult services now they try and do their best to make it as easy as possible for her. She hates hospitals and finds them really distressing but I had to take her to the RVI the other night and they made sure that, once she had been triaged, we got a side room and they also pushed her up the list so that we only had a three hour stay altogether.

I can't believe that a major hospital like the RVI has no access to consultants. If you are taking him though I would go sooner rather than later as Friday night is not great.

Yes take him to A&E today. It is shocking that the GP has not reacted quickly and you are expected to wait another month. Hope he is ok and you get seen quickly

Nobody will flame you for this OP. It sounds like an emergency situation and needs sorting. So sorry - this must be a shit situation for you.

Do it I wish my cousin had been taken. He had a number of GP appointments who eventually referred him to a specialist but was a 6 week wait. Before the appointment came he had passed away. I don't want to say what he had as it's outing.

Take him at 8am and hopefully you won't be waiting so long. But a friend of mine was repeatedly told to let the antibiotics and iron tablets work. She ended up getting a taxi to a children's hospital as our and diagnosed with blood cancer 2 days later.

Its your prerogative just be warned some A&E are saying increase in covid admissions is making for even longer waits than usual

I would take him tonight , he doesn’t need a specific consultant , he needs assessment .

Please take him, he might get some treatment to relieve his symptoms while he waits for a Consultant appt. Poor lad, I can imagine nothing worse than a mouth full of ulcers, and if he's passing blood he could be anaemic. I feel heartsick for you both and hope you get the help you need from A&E. Holding your hand🥰

Never been more sure of an armchair diagnosis than this: agree it must be crohns.

I wouldn't wait until Monday, I'd try and get him admitted earlier for stabilisation. No they won't start treatment but they can give fluids, pain relief, prescribe meal replacement drinks etc
Perhaps even get him a ct scan.

I wouldn't take him tonight or tomorrow evening, you'll be hours, but Saturday morning or early afternoon you should be OK.

It might be better to attempt an out of hours urgent apt with a GP first, who can then refer him directly to A&E which will also speed things up once you arrive.

Of course, if you get a gp who says to wait it out then you can still go to A&E anyway.

Do prep for A&E - take an overnight bag for him (can always keep in car until he's on a ward), take water/hot drinks, snacks, phone chargers - and anything which will help his ASD too like ear plugs and headphones.

If you decide you're ok to wait until Monday, then have you tried nutritional drinks? You can buy from boots - Complan, Ensure etc. They don't taste great but some people like them more than others so it's worth a go. And some people like some flavours but not others. Talk to the on duty pharmacist for advice first though.

It's important to keep his fluids up - rehydration salts for diarrhoea will make a huge difference to how he feels. Some taste better than others - personally I think boots or superdrug own taste best & drinking from a bottle rather than a glass can help because it stops you smelling them.

Sips of water may be more manageable and if he can eat at least one thing a day that will help too. Plain egg sandwich on white bread was my brother's go to (severe ulcerative colitis at the same age, a weak barely-walking skeleton like your son). Just a boiled egg in soft white bread. Gentle, smooth soups were also just manageable.

Even when hardly able to eat, any sustenance is better than none and does make a difference to strength etc.

Good luck and if you get scared about waiting or find yourself dithering as to what to do - just take him in. Even tonight if you need to. You won't be wasting anyone's time.

Normally I’d say if you can wait don’t go, but having read that he absolutely needs to go. I hope you will get some answers and him better soon x

No judgement from me.......look at the statistics for unnecessarily death in people who have LDs and Autism because of inadequate care. Take him And don't stop making noise until he's treated properly with a lot more urgency.

As someone with Crohn’s, yes do go! If he’s that bad, he needs IV steroids to settle the inflammation down.

Also @PuppyKeep please tell him, as dreadful and as scared as he may feel right now, they can treat him, and will look after him.

I know it's very scary for you both, but they really are making advances in medicine for IBD all the time. We were told that when my brother was 13 and it seemed like wishful thinking but 10 years later a whole new type of drug was available which is relieving even patients with some of the most relentless IBD.

It might feel very dark at times but there's light at the end of the tunnel, I promise.

Don't be afraid to kick up a stink. Sometimes even with the best intentions, a desperately ill patient can get stuck in the system - if you need to shout, then you shout.

I wouldn’t wait until Monday - even he doesn’t see a consultant over the weekend he will be treated for the pain and may need a drip if he is dehydrated ect.

Thanks everyone. He’s sleeping. No stool for 4 days. I’ve given Calpol and his usual laxatives.

He doesn’t want to go to hospital “if the proper people aren’t around”. I said they’d definitely be around on Monday so we will go then at the latest.

I keep randomly crying. It’s so hard.

My husband has recently had his atrial fibrilation start up again after surgery 2 years ago. It was ridiculous - GP had made both an NHS and a private referral but he still ended up having to wait 8 weeks and he had 3 bad episodes over just one weekend. A & E didn't want to know as technically he was in the system waiting .... but paramedics were great and rang the SDEC unit where he was seen straight away.

In all seriousness I would phone 111 and see if they'll help. You've got nothing to lose and they were actually very helpful on the times we needed emergency help before he saw the Consultant and it was always over a weekend . I can only share your stress - the system is truly and utterly fucked. Sitting with DH when his heart was racing at 175 bpm and no one wanted to help was terrifying.

I didn't read all of the responses but why aren't you taking him now? why wait for the weekend? From your description, he sounds very unwell.

You do t know for sure that the ‘proper people’ won’t be around. There will be Drs to help him and there will be somebody on call if needed. They maybe able to get some treatment started than waiting. It certainly can be any worse than the situation you are in now.

If he won't go it might you to chat to a pharmacist in the meantime, they can be excellent.

Didn't pick up that he was bunged up - an egg sandwich might not be best for him! Food is tricky for ibd patients at the best of times, and you'll know better than any of us what is and isn't suitable for him personally.

You cry as much as you need to. Sometimes I think this point is harder on the parents than the child - and my brother would say the same!

If you feel you need to overrule your son (&can given his asd) then do.