A&E Peads never want to root cause creating viscous cycle

[jamesc25]

Hello all, long term viewer but first time post. My 2 year old DS has ended up in A&E a few times due to illness/viruses that worsen and won’t clear. On one of the occasions he had to stay in for nearly a week with IV antibiotics. On every visit we have a battle trying to get anyone to actually help root cause anything. They are so on their knees that they send everyone home after the 5 hour wait as long as they are not “clinically unwell”.

This time our DS has has diarrhoea for 11 days and then started being sick late last night for the first time but to the point where his body was shutting down and started passing out. We were told by the doctor (Not a peads doctor as they had a shortage) that they are happy for this to go on for longer until they do something and would need major signs before investigating. Most of the NHS advice says not to leave it, yet the doctors are happy for it to drag.

Does anyone else feel like our little ones are being made to get to the point of being very unwell and back in hospital due to no prevention? It seems to be counter intuitive to let people get seriously unwell.

Outside of the A&E visits we are paying privately to try and work out why he can’t shake illnesses off without it always ending up in a hospital visit but struggling to find a cause, so we end up with this vicious circle of hospital battles and 5 hours of our DS being ill laying on the waiting room floor.

I am a very strong willed person and I will fight to ensure we are not fobbed off, however, it’s like talking to a brick wall. My biggest fear is if he then does get to the point of needing urgent attention unless you aren’t breathing the ambulance wait time is 20 hours, if you then choose to drive directly like we did last night, there is no one to even see you at the reception desk.

Interested to know if anyone else feels like they have this battle? I spoke to a lot of parents last night that seemed to feel like they were waiting for 5 hours to just be sent away again.

I have nurses in the family so am very aware of the NHS stretch but every-time I come away they are horrified at the outcome.

Many thanks in advance!

It really IS that easy.

It’s really not. A referral is going to be for something on-going which we already have in place. I am asking what we do in the situations where our DS is currently ill with diarrhoea that is not clearing. Bloods are another week away because they have a shortage of phlebotomists.

The gap I am describing here is the difference between the hospital checking he is stable and the referral which will be months away. Surely no one here agrees its normal to let a 2 year old have diarrhoea for a month (which is the advice of the hospital)

Have you asked GP to chase referral? If you've been in hospital twice recently and GP can write this in yet another letter to consultant saying referral is now urgent and asking for you to be seen ASAP.

Have you also rung consultant. Sometimes it's hard to get through to them eventually you can get through to the Secretary explain the situation that chasing letters now been sent, ask for any last-minute appointments which they're often aren't any but the fact you've rung and keep ringing every couple of weeks means that they don't forget you and you have more of a chance of being seen earlier.

I think it’s because whatever the “root cause” is, doesn’t really matter to A&E staff, the treatment for diarrhoea will be the same whatever the “cause”.

If the person (adult or child) is stable then you get sent home, if not they admit you. A&e don't investigate. You need to see your gp

you can go to your A&E dept as many times as you like, this will be the outcome. They aren’t being difficult, but it simply isn’t in their remit to refer you as an outpatient to another speciality. That is your GP. There is literally nothing They can do.
Perusing this privately is your quickest option.

Surely no one here agrees its normal to let a 2 year old have diarrhoea for a month

not normal, but not that unusual either.

Has he had bloods done? If not push for that from your GP.

A month is too long he just feel dreadful

Agree with others that A&E is literally there to patch you up/stabilise you, urgent care. It's literally called accident and emergency. Diarrhoea for 12 days while uncomfortable isn't an emergency until the point where IV fluids etc are needed. If it's investigative work that is required that's not what A&E are there for.

GP needs to refer you to whatever department it is you need as an outpatient.

A&E isn't there just to speed things up for you because bloods via the GP are a week wait or however long you said.

Apologies if you’ve already mentioned this and I’ve totally missed it, but does your son get admitted to the peads ward as a result of any of the A&E visits? Or is he treated in A&E and then discharged?

Your son’s regular extreme responses to normal bugs and illnesses is very similar to my own experience with DD. She would always end up extremely ill, necessitating a trip to A&E, but we were always then triaged to the paediatric assessment unit (PAU) following the immediate A&E response. Most often, the PAU would admit her to the peads ward, but sometimes we would be discharged after they worked out a treatment plan at the PAU. After 3 admissions to the peads ward, we were assigned a peads consultant to review everything. It took about 18 months, lots of serious illness and hospital admissions and she ended up being diagnosed with a rare immune deficiency.

If A&E are not sending you to a PAU, I think it’s a good suggestion from others to ask your GP for a peads referral so you can get in that way.

GPs will refer if they think something is wrong.

Kids do get lots of bugs, to help build a healthy immune system. With diarrhea they (and pharmacists, i work at one) will give advice to eat small amounts of very plain food, avoid dairy (other than fermented) and stay hydrated. Most parents of toddlers fail to avoid milk and diarrhea continues.
(In some cases, digestive irritation may trigger a temporary shortage of the enzyme needed to properly digest lactose, causing short-term secondary lactose intolerance.)

How are you treating his diarrhea? what advice have you been given? have you spoken to anyone about how to make a daily journal of symptoms, foods etc?

I do feel for you OP because it feels relentless when you http keep going to A and E. I posted upthread.
Are they suggesting perhaps cutting out food and getting him to drink Dioralyte only for 24 hours or something like that?
it’s really helped my DD last October when she started TRIGGER WARNING to vomit blood from the irritation in her tummy.
That and a medicine like Omeprazole (it wasn’t that but something like that).
My DD is more prone to getting infection in her stomach because she’s gastronomy fed.
I think when the tummy gets upset it can really go on for a long time.
Somewhat perversely diahorrea can be a sign of constipation . Are they feeling his tummy?
Is there a paediatric unit at the hospital you take him to?

And some sweeteners and flavourings can irritate the gut, like sugar free drinks and yoghurts. Or even as a reaction to hot weather.

Often gp can call the on call paediatric registrar for a child to be seen on an ambulatory care paeds ward or assessment unit - there are different names depending on where you live and what hospital is available nearby. Ask your gp as this isn’t a&e material but he should be seen with the history you are giving. In the meantime i would record how much he’s eating drinking and pooing - look at Bristol stool chart for guide to explain to gp - can you see out of hours over weekend?

is your child well and behaving normally eating and drinking or Lethargic and floppy?
if it’s the latter get him seen asap if he’s just feeling a bit off and otherwise playing, eating and drinking I would push for an urgent Paed assessment which will likely be done by a spReg paediatrician. My old unit saw kids 24/7 they were triaged by a paeds nurse and seen by drs and either monitored, sent home with treatment/advice or transfer to the inpatient ward for further treatment. Hopefully you can get your son seen and some reassurance soon.

There is a condition called toddler diarrhea. It can be triggered by a virus and the stools never solidify. You need to change the child's diet in order to mitigate it.
DS had it for months and only stopped when we started to potty train as he started to hold it in.

The state of the NHS is another matter. Its dreadful and unsafe, in no way to do with the staff, and the idea that medical matters should be investigated and sorted before they get critical has not been happening for years and years for many conditions. Its just really unfortunate for you that you have found this out when your child is ill- it makes the worry so much worse.

You are bang on, I think its really sad for the staff as I know it’s not what they want to offer but have no choice. I think thats the bit that worries me I am learning it does need to get very bad before you can get help. Feels very unfair on little ones to prolong but know it’s not out of choice.

Thank you to being one of the many who have posted recently that has restored my faith in this forum for understanding.

Thank you so much for your reply. He is not himself at all, he is exhausted and constantly sleeping now with it. I think I will try the out of hours care

They do feel his tummy yes, it’s the only thing they really do. I guess they are limited to what they can check. A stool sample has been set off. Thank you for your advice with your experience from your DD gives me some things to bear in mind.

i also want to say thank you for being supportive and understanding! Really appreciate it

I am so glad you got an answer for your DD, I think not knowing is tough. It sounds like from your similar experience you have to ride out the individual episode’s (as stressful as they are when they end up in A&E) and then continue to work out with the referral why we keep ending up here.

On one occasion we did end up on peads and the level of care was a lot higher. I think the issue is sadly they let it get worse before you can get there.

I wish you all the best and thanks again

GP has requested. It’s so frustrating that Friday is the next available slot for child bloods. Due to a shortage in peads phlebotomists.Thank you!

Currently giving him a ginger biscuit incase his blood sugars have dropped causing the possible lethargy and on hold to 111. Thanks again for all the advice.

When you go to A and E OP ask if you can give Dioralyte - it helps restore the electrolytes and stops vomiting from irritation. Does your DS describe how he feels? I imagine that it’s tough (my DD is non verbal so I’m getting good at reading signs of things).

My DD was a bit younger when she had diarrhoea for months on end. It turned out she had crypto spyrridium (sp). It was almost jelly like and she was sick quite a lot too. Could he have caught a bacterial infection anywhere? Environmental health got involved with us and it was traced to the local swimming pool (others had also got it and it was the only place we had all been)

It’s really interesting you say this. He went swimming in an outdoor pool just before this started and we had assumed this is where he picked it up. However, what you are describing seems scarily similar, the stools have a lot of mucus in them. I guess this is like the jelly you speak of. Thank you for taking the time to comment. Sorry you also had to go through all that with your DD