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?

My son has had crohns for years. There is very little that A&E can do apart from offer pain relief unless you have a consultant already who will possibly see you in A&E. But unlikely at the weekend.
It is possible that given the symptoms they may be able to get you seen sooner, but this isn't guaranteed. They will have to do a colonoscopy and an endoscopy to diagnose which won't happen at A&E

I would keep pushing the hospital for a quicker appointment. We finally got a cancellation which meant my son could be seen sooner. I had almost 3 years of getting fobbed off by GP's with my son who was 8 when he was finally diagnosed with crohns.

Good luck, I know just how miserable and hard it is to get anything done.

You need a referral not A&E.

id be tempted to take him today and hopefully he’ll be admitted so they can monitor him.

The poor boy. Yes take him its not emergency.

Believe me I understand that

Make sure you check b12 as well as ferritin and foliate b12 deficiency is very damaging

Take him to the RVI. They have some great and very empathetic consultants. They will also have a consultant on call over the weekend.

Yes, I also think take him today OP.
Further delay could make things even worse.
Take him today and please let us all know how you get on 💐

Is it worth ringing 111 and seeing if you can get admitted to a specialist children’s hospital? (Alder Hey?)

I would go now. They could at least manage his pain until he is seen by the specialist. My sister was fobbed off with IBS & took a 7 day hospital admission to get her ulcerative colitis diagnosis. I've been years waiting for an endoscopy for ceoliac disease because I wasn't 'unwell enough' & wouldn't hesitate to go to a&e if I thought it might help

100% take him. At the very least they can hydrate him and give him painkillers which will
hopefully get him through the weekend.

My Crohn’s was diagnosed when I was 14, through A&E as I was bleeding and wasting away.

I started steroids immediately, before I was even diagnosed. I was in for 4 weeks as I was being fed through a tube then had 6 months of an enteral diet. His was years ago but even now, A&E are always helpful if I am in a nasty flare.

Please take him. Now, before the Friday night drunks start drinking.

I hope they can help him x

I went through something similar last year except mine was chronic diarrhoea, it was suspected ulcerative colitis but turned out to be infectious colitis, however I suffered for around 2 months.

The point of me telling you this is because I joined a UC group and there were a few people on there who had been hospitalised with it. They were given IV steroids/antibiotics, so I would absolutely take him. It could be the difference between him getting treatment and feeling better now and suffering for another 4 weeks or more. (I am not diagnosing by the way, I am on your side and think you should take him)

If you’re desperate for action then take him in now. If he’s that ill like you said then they will admit him. I have IBD in the form of ulcerative colitis and if I’m ill then I go in and they admit me . You’ll be guaranteed to be waiting in the a&e anyway so might as well go in. If they suspect Crohn’s they can get the relevant tests done sooner rather then waiting.

You already got the responses you need but just want to offer a handhold.

You are a good mum and doing the right thing for your child. This is an emergency.

Admitted directly to the ward, is only a thing if your child has a chronic condition that can have exercebations that usually need urgent medical intervention. It's called Direct acces or open access or yellow card depending on the hospital.

Anyway, most hospitals in London have stopped this model of care (except for oncology/immunocompromised patients). All other patients go through A&E before going through to the ward even if referred.

@PuppyKeep we offer a 24hr service in Paediatrics. Don't wait till Monday. All paediatric specialties have consultants-on-call for out of hours.
Get him seen too, so his pain can be managed at the very least. He will be seen by a Gen Paed Consultant even if it is the weekend. And the Gen Paed Consultant can then speak to a Paed Gastro consultant on call. Feel free to DM me.

@PuppyKeep yes it is. I’m actually shocked that people don’t seem to know that GPs can arrange same day hospital review. I’m a GP. If I saw a child who I thought needed admission to hospital, I would simply arrange for them to be seen that day. Yes the paediatrician they see would be a junior doctor, but that doctor could ask for senior review by the on-call consultant if necessary.

It’s too late for that now OP, as GP surgeries will be fully booked and at full capacity by this time on a Friday, and they’ll advise A&E anyway. But for future reference, yes, GPs can admit patients to hospital.

Another one here to say that yes, you should take him. He’s got zero energy and is beyond exhausted - he might well need an admission.

Id wait until monday and go in the morning.
Last thing you need is hours in emergency to be told to go home and come back monday

You can try taking him and they may keep him in if they judge he is unwell enough.

I took my DD in twice in the three months preceding her diagnosis of crohns, after her referral but before she was seen by the gastro team. She was spiking random fevers, vomiting intermittently, had constant diarrhea and couldn't walk more than 50 yards without being so breathless she could barely stand. They didn't keep her in but they did do all the blood tests they would usually do at the first gastro appointment.

Once she saw the consultant (we waited 3 months for urgent referral) she was seen for a colonoscopy just 2 weeks later and diagnosed that same day, and kept in for refeeding/establishing liquid diet.

The liquid diet was miraculous for my DD. She was skipping along within a fortnight and ended up gaining 8 kilos in 6 weeks (aged 10).

Have you joined "parents of children with IBD" on FB? It's a very supportive and knowledgeable little community.

Take him OP, he needs to be seen urgently.

This happened to my DB during university. He was a medical student and strongly suspected he had Crohn’s, however after countless GP appointments he still hadn’t been referred. He came home one half term with all the symptoms you described and my mum took him straight to A&E. The nurses and doctors could not believe how poorly he had been left to get. They were brilliant and took amazing care of him.

I feel for you. It’s awful to see someone you love in such pain. I hope he gets the treatment he needs ASAP

I am going through the same with my dd (19, severely autistic) we have been back and forth to the gp for the last 2 months, tried various suggestions from the gp and nurse. At no point have they suggested a blood test (which I find odd), they have suggested endoscopy which will be our next step and would involve her being knocked out. My dd isn’t very verbal so finds it hard to tell me what’s wrong. I totally get how stressful and worrying it is, I have struggled to sleep with worry. I spend all day trying to find things she will eat, I even offer to take her to McDonald’s but often she just picks at food.

I feel GP’s don’t really listen when I say ‘somethings wrong’, I feel like children/adults with SEN’s don’t get offered the tests others are offered, probably because it involves more time and possible sedation to do these tests?

I am not sure I could take dd to A&E, she just wouldn’t cope. I would demand an appointment with gp on Monday and demand a referral and bloods.

You've answered you own question.

A child with rapid weight loss and blood in his stool is life/death emergencies.

This is really frustrating for everyone. There is no way that speeding up investigations and doing imaging etc is more expensive than the amount of people who end up with a Stoma, because of NHS neglect. He has the symptoms of bowel cancer, the referrals/follow ups aren't happening, so A&E is definitely appropriate, chronic constipation can be life threatening.

Hello, please take him in today. If he can barely walk to the toilet he needs to be seen. Even if consultant is not there they may well admit and start him on some form of treatment. If he is malnourished he needs to be seen! I would not hesitate.

Please listen to this, don’t wait until Monday. I don’t mean to scare you but there is a reason SEN kids have higher mortality and that’s partly because their pain is not taken as seriously.