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 is he eating a diet that’s based on the possibility of him having crohns? And smaller meals throughout the day rather than the 3 normal timings?

massive hugs to you all as it sounds awful and I really hope he gets the help
he needs soon.

would asking in local community Facebook groups if anyone has a small wheelchair you can borrow assist for now? So he isn’t drained further when having to make appointments?

No doesn't happen very often now. You get referred to the medical team usually through a&e. They then refer to the relevant team.
I have found hospital treatment awful in recent years. I really had to push for things to be done and to speak to medical staff. I'm a retired GP and know what I'm talking about so it was very frustrating

We had a very similar situation with ds as a teen. It went on for almost a year, with tests showing inflammation and raised white blood cells but nothing more specific. Believe it or not, when it all came to a head, it turned to be his appendix. It didn't present in a typical manner. His Dr maintains that the appendix was a separate issue but as soon as it was removed he regained all the weight and never had another issue since. Best of luck with A&E.

I would agree not to wait until Monday too. At least you'll be in there and the nursing staff can monitor

Take him but go, if you can, to a proper children’s A&E.

This is the way forward.
My DSD was treated as an emergency at 11yo due to pain& exhaustion. She was fed specialist “milkshake”overnight by nasogastric tube for a couple of months whilst she healed. After, she began to feel physically better, happier and to grow again - she had stopped, due to lack of nutrients - and soon went back to school. Many ‘scopes & MRIs over the years.
Prepare for some pretty invasive stuff but also for some powerful results when the results are in.
Beat wishes

Yes go ASAP. And also, if it provides a faster route at any point in the next week or two, consider whether doing anything privately will help, if you can possibly afford it. Like for example, having a private mri scan same day or next day, which means you have results you need to get the NHS to help you without waiting weeks for tests.

Can you call 111 and get him seen this weekend? Or call 999 if it becomes an emergency. Don't wait. I really feel for you. It can be so hard getting on the system xxx

Your son is your priority. Do it.

Please take him today (said by aomeone with IBD and works in A&E). There are on call consultants that cover out of hours. They will be able to initiate treatment to make him feel better in the form of pain relief, fluids, steroids if needed. He will also get investigations - either over the weekend if they're urgently needed or they will be arranged for next week. Thinking of your DS.

I'm surprised the gp hasn't already done this, poor lad .

I haven't read the full thread but when you do go to the hospital request support from the Learning Disability nursing team. They should be able to help put extra support or adjustments in place.

https://www.newcastle-hospitals.nhs.uk/information-for-all-patients-visitors/accessibility/learning-disability-support-service/

Take him and get him seen. They may well be completely genuinely unable to do a proper diagnosis in A&E because that may take specialists which aren't in A&E and aren't in at the weekend, but they can and should be helping with the symptoms and helping him rehydrate.

I’d be gathering up his things and taking him in today, slightly different but a relative of mine has been admitted with similar issues over a weekend before even though their consultant wasn’t around, they’ve lived with the condition for years and sometimes the only route in is via a&e, we’ve also had a gp ring an ambulance before after they went to a gp appointment for abominable pain and they were taken directly to where they needed to be, they didn’t have to wait in a&e first.

No, it's never worth going on a weekend or evening unless you are literally dying and need immediate emergency surgery. There will be no specialists on duty, no scans will be done unless, again, you're literally dying etc.

OP, yes, a young child as sick as you describe should be seen as soon as possible. (Whether they will is another matter.) I wouldn't get to the hospital before 9am. I hope you get seen and a plan of action is agreed ASAP.

I’d take him. Hope he is recovering soon big hug for you xxxx

Yes take him on Monday.

im a nurse, work in ICU but previously in a gastro (adult) ward for years, yes absolutely take him, I know it’s probably not life or death but the outrageous waiting times mean sometimes you’ve just got to head to a&e and demand treatment. I wouldn’t give this a second chance. Yes waiting until Monday will probably mean seeing a gastro consultant but if you go now, he probably won’t get the specialist treatment as such but he will get supportive care, IV fluids, nutrition, bowel and fluid charts started which will help in assessment come Monday, IV steroids possible. Also if he is passing a lot of blood he may been a blood transfusion which will make him feel so much better if he’s anemic. Depending on lots of factors he may qualify for a scope (up or down depending of clinical symptoms) on the emergency bleeders list over the weekend. So wouldn’t rule out just going tonight.

SDEC had limited inclusion criteria, it's probably best for the OP to take her son to a paediatric A&E

You have absolutely nothing to lose by taking your son to A&E. There are many GP’s who have very little knowledge of IBD and it sounds like your GP is one of them to allow your sons condition to get to this point that he is so poorly before referring him. A&E May turn you away and tell you that you need to wait the four weeks for your son’s referral appointment but they may also be able to get him seen sooner.
If they do turn you away then I would go back to the gp on Monday and be the voice for your son to have an instant referral.
It definitely sounds like Crohns but be reassured the treatment for crohns has come on a long way and once treatment starts you will start to get your son back.
There is a children’s charity called CICRA which is for children with IBD, there is lots of useful information on the website. You can also give them a call on Monday and ask their advice or just to have a general chat about your concerns.
Wishing you and your son all the very best and I really do hope he gets the treatment that he needs very soon.

What about asking about a referral to a paeds urgent ward - can’t remember what it’s called but DD was admitted as a young child

I would take him tonight x

Go, hopefully A&E can get him on the right ward this weekend.

I'm another example of a family engaging with GP etc and still having to go thru A&E for Crohn's for my daughter (now an adult) when she was 11.

We had even been to A&E once before (sent by GP), they decided it was an infection and gave us an appointment with a general paediatrician.

She got worse over the following days and I called asking for a sooner appointment (the scheduled one was in 10 days) and was told to wait. I said she'd be dead in 10 days and was advised to go to A&E again.

This time the doctor in the child assessment team said likely Crohn's, she was transferred to a ward and saw a surgeon and consultant that evening (they stayed late to see her) and thanks to a cancellation she had endoscopy and colonoscopy the next day and treatment (initially the blunt instrument that is steroids) before feeding tube. She was in over 2 weeks. Eventually moved to managing with diet and biologics.

Good luck.

Does sound like Crohn's Disease. Take your son and he will get fluids, pain relief and anti inflammatory which will make him feel a lot better. Good luck

Go now - he needs fluids and IV electrolytes/ rescue bags. Yes the consultant will happen on Monday, but we needs urgent immediate treatment to keep him safe given the symptoms you describe - tests, consultants etc can come later.