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?

Anything with blood, A& E pronto

Definitely go to the RVI, they will not dismiss you/say to wait for a referral. My daughter is under the RVI (metabolic mostly but also gastro) and they are amazing. You can hit lucky on the weekend as it just depends who is on call but a lot of the consultants have gastro knowledge too. If you do go over the weekend they may admit you with a temporary plan and then the consultant on Monday morning would make a more suitable plan but would mean your already on a ward to be seen. If your lucky and get on the gastro ward (depends on beds!) they are amazing. We travel 120 mile round trip to go to the RVI and it’s worth it. NSECH is a bit closer to us but I always drive the extra! A bit of advice, if you decide to wait until Monday I would go early morning so your there before handover. Do expect there to be a wait though as obviously there will have been admissions over the weekend/ gastro emergencies waiting to see consultant too.

Accidentally pressed the wrong button. But no take him YANBU

Yes go on Monday and demand answers xxx good luck xxx

Good heavens why has the Drs done more for the poor lad you must be besides yourself x yes absolutely take him to A&E, you know your child best he sounds a very poorly young man & he’s only got you to advocate for him; so please do go & get him the hell he’ll h so desperately needs x
Goid luck I hope both get the help & support you both need. Xx

One of my best friends had crohn’s. Diagnosed because I made her go to A&E when she got to 5 stone and was actually grey. The GP was doing nothing. Get to A&A.

Typo- that should say HAS crohn’s

Is there a children’s ward / hospital nearby ? They must surely have a consultant available. Even if a consultant is not available today they may be able to do bloods , scans or x rays ?

And A&E 🙈

Yes, or NHS is so bad. My daughter had gallstones and attacks every day but she ‘didn’t qualify’ for the urgent list. 6 month wait for surgery. I rang every day for 8 weeks. Finally got her on the urgent list, maybe because they were sick of me ringing, and the surgery happened this week. It took almost 4 hours instead of 1 because of complications as it was so inflamed and damaged. They were happy to leave her in excruciating pain. I’m glad I pushed.

I would take him.

Sweetheart, please go if he's not right. Explain to him that the experts for his condition aren't there but there are lots of other experts who can make him feel comfortable and look after him until Monday.

Brings back awful memories of trying to get my DS seen when he was little. All okay in the end but we ended up in a very traumatic emergency situation, and a much longer recovery time. It's so hard. Stay strong. Stay advocating for your DS xxxxx

I’d go now, I have crohns and was diagnosed after an admission via casualty. They can help treat symptoms ahead of the consultant being available.

Has the community paediatrician/GP actually rang up and spoken to the paediatrician/paediatric gastroenterologist? Every hospital I've worked in has had a system where some urgent (often on the ward) consultant clinic slots are reserved for the really urgent outpatient stuff that the referring clinician has actually spoken to the consultant about. Locally, ?IBD would be seen by general paeds before being referred on to the tertiary centre to get a paeds gastroenterologist, but would generally be a phone call to get a rapid access clinic, not a letter for a more standard outpatient appointment.

Why not take him today and see what happens? The registrar would surely see him and if he needs admitting may liaise with the consultant over the phone?

My husband has crohn’s a&e won’t help, they do a scan/blood test see he’s been refered and said they’ll try and make his referral urgent

It sounds like B12 deficiency to me - investigate it - work out how to treat it yourself - as the NHS is dire for treatement

If it is Chrons it links to b12 - but folic acid and B12 will be your friends x

In no way are you being unreasonable!
I hope he gets better soon xx

I’m a nurse and would also say take him to A&E today. Your poor son. Sending you loads of best wishes.

Absolutely take him now. Don't wait. This sounds like advanced ulcerative colitis.

I came on fully expecting to roll my eyes and say ‘please do not misuse ED’. Please please take him - take him now. Ideally to a big teaching hospital, not a small local one (Newcastle would be fine). There are consultants available at the weekend - there definitely will be paediatricians. They may be able to give fluids and do other bits to ease things for now - they may be able to do much more than that. Wishing you well - horrifying for him to live like this - you must be beside yourself. Sending love

Yes it is, experienced it recently with 2 different problems which need urgent attention 10 months waiting time or longer. NHS doesn't exist unless it's really or cancer. Hope your lad has some treatment on Monday.

Do it. Sometimes you have to make as much noise as possible to get medical help. I hope he’s ok

I would take him now too. I can’t believe they said come back on Monday!

Take him. And make an enormous fuss if anyone tries to turn you away. Those who shout loudest are the ones who get what they need. That shouldn’t be the case, but with the NHS atm, it’s dog eat dog. NHS is a pile of crap and not fit for purpose.

My son was diagnosed with Crohn’s Disease at 10yo. He had his colonoscopy delayed twice - once by the hospital and once by me because he was sick. After those delays we waited and waited and he was finally diagnosed almost four months later - only after I kept on their backs. He was like a little shadow - losing weight at a rate of knots, pale skin, black circles under his eyes, eczema everywhere and constant mouth ulcers. If I had even thought of taking him to A&E I would have. It never occurred to me. Honestly, if it gets your child seen sooner, just do it. The consultant who treated my son said he should never have been left that long. If it is Crohn’s, the quicker your child starts treatment the better. I hope he’s ok, bless him.