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?

Yes take him!
Oh you poor thing you must be sick with worry.
It sounds like crohns.
My sister has it, two friends of mine have it and both friends were misdiagnosed as coeliac. They all looked like death.
But when they received treatment they started to look healthy again. I hope this gives you hope. Crohns is tedious but right treatment will get him sorted.
Best of luck Monday xxx

Just read that it's the RVI. In that case I would suggest Monday, as I happen to know that fairly recently they didn't have weekend paediatric gastroenterology consultant cover, due to major staff shortages, and I haven't heard anything about that having changed.

Your poor son. You must be desperately worried and he must feel terrible. I just wanted to say that you are describing many of the symptoms of B12 deficiency. The chronic fatigue, mouth ulcers and low appetite. I pestered the Gp for 3 years because I felt so awful. When I by chance found out about this & all my symptoms matched I went back to the Gp. I was given a blood test & diagnosed within 24 hours.

B12 is absorbed through the intrinsic factor in the stomach so he could have Crohns which has made his B12 deficient. Mine was caused by undiagnosed coeliac.

https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/symptoms/

I hope you can get him sorted and on the road to recovery.

I hope you get some help soon. Please be aware of the new Martha's Rule incase you need to push to be taken seriously.
It's a new patient safety initiative being rolled out to ensure patients and their families can seek an urgent review if they feel their condition is not being taken seriously. This initiative is backed by patient rights under the NHS Constitution, which include the right to dignity, respect, and the right to complain about care.

NHS England » Martha’s Rule share.google/AhpNfe5IsnjwHJJuD

Please please push for a b12 test.. minimum

It is not 'just a vitamin' it really is life changing. x

I'd just get him up to hospital. If he's as ill as you are describing that's where he needs to be

Aww, you poor things. Absolutely go and I hope he feels better soon x

I agree with going to A&E. However, have you looked into whether you can get a quicker referral via the right to choose system?

Have you contacted the NHS website and explained. You can also ring 111 and they should help you.

It sounds like Crohn's. which is a very nasty disease and should be investigated right away. In any case, bleeding PR should not be ignored. If he passes blood again, put a sample in a pot with a lid and take him and it to A&E.

My son has IBD, we took him to a&e prior to diagnosis when we were concerned, he was admitted to children's ward and the on call doctors liaised with the doctors at our big children's hospital to start a treatment plan. It actually got things moving a lot quicker. Also there is a page on Facebook called parents of children with IBD, it's very helpful. Take care

Crohns can be a nasty disease but can be treated and managed. Really don’t think the poster needs to read things like this.

My goodness you poor thing you must be worried sick. You're his mother, you have intuition about this kind of thing. Go with your gut.

Hope he feels better soon x

I agree. The worst time for Crohn's is definitely before diagnosis. You are closely monitored thereafter and things aren't allowed to slip so far again.

For example, DD was in remission for 2 years after diagnosis and then went into a flare. I rang end of Nov to say I thought she was flaring; she was getting skinny and tired again and there was that very distinctive Crohn's smell from the bathroom. They had her in early Jan to see the consultant, she had an iron infusion mid Jan, was rescoped mid Feb, immediately started on steroids to put her back in remission, then started on new meds at the end of the steroid taper in early May. She has bloods every 3 months and stool sample once or twice a year.

Once diagnosed, there are many more good times than bad for most people. Getting the right treatment can take a while, but most people do get stabilised.

OP I'm in the north east and managed to get an urgent same day app with the GP as my 4 year old DS chest infection wasn't shifting. The GP referred him straight away to the RVI and because we had the referral quickened up the process. Do you usually sit in the children's area of the rvi if youve been for your son recently ?

Another thing to consider is that there is a link between autism and vitamin deficiencies. I am ND and even though I am outside daily on long dog walks I've recently discovered I'm critically low on vitamin D, iron and B12. It was causing lots of different symptoms including fatigue. I'm absolutely fine now after supplements.

@PuppyKeepmy dad has been in the rvi a few times. It is a good hospital. He went in on a Saturday night once and had treatment from a consultant on a Saturday evening. I hope your son isn't getting worse. Lots of people on here saying to go but your son saying he's wanting to wait for the proper people and you listen to him. There will be a gastroenterology team on call and at least he can get bloods done and pain relief and fluids. Please if you haven't taken him do so.

this is too dangerous, it can’t be left four weeks!

If he is in acute pain or having trouble keeping himself hydrated, take him now. They can give him fluids and manage the pain. Otherwise go tomorrow and don’t leave without having a plan. Did the paediatrician emphasise his weight loss when the referral was done? I am so sorry you are unable to get the help you need

You need to take him in. It’s not really a matter of ‘the right people’ being around. The paediatric Drs will see him over the weekend. They will refer to specialist Drs. Even if you’re an inpatient you don’t necessarily get seen by a specialist team immediately it doesn’t work like that.
He needs to be in asap.

Agree btw re the state of the NHS and I work for it.
It is absolutely run in to the ground. I was always a staunch defender, but some things I’ve seen and heard lately are a disgrace.

Doctor and SEN mum here - take him . Wishing you all the best

Wishing you and your dear boy all the luck in the world for tomorrow

Yes @rainbowruthie well said - best wishes @PuppyKeep for you both 💐

Good luck tomorrow. Sending you a big hug. It’s horrible when your child is suffering 💐

Of course it can be treated - if it is diagnosed. What I suggested is not bad. The OP said the DC was passing blood in the stool. I said the next one which has blood in it, put in something with a lid and take it to A&E with him.

What's wrong with what I said?