Black vomit

[BonBon8493]

Hi everyone,

Just wondered if anyone has experienced anything similar! I’ll start by saying that we are under a consultant at the hospital for this but we feel a bit in limbo at the moment.

My little boy has been to hospital 3 times now for stays relating to large black vomits. (Confirmed blood) These episodes can last for a few days at a time and then will disappear for 10-12 weeks! It’s so incredibly random and worrying and we cannot link it to anything. He’s had an endoscopy and the surgeons couldn’t find anything (such a relief). Our issue is that it keeps happening and no one seems to know what it is!

He is currently on 20mg omeprazole but it’s still happening despite this. His iron levels are low too (normally dropping after the black vomits as it’s blood) so he’s on and off of cytron iron supplements.

We feel a bit helpless at the moment and keep being told to ‘monitor’ but this has been going on since he was 8 months old and he’s now 13 months old. Poor little thing!

Sorry to read this. There’s obviously something not right with your child. I would absolutely push for a second opinion.

@Groutyonehereagain Thank you! We never want to be ‘those’ parents but we are going to be for the sake of our boy. I think the issue is that no one knows what the next steps are! But someone must have an idea.

I am going to be ringing the consultant surgeon admin team tomorrow as he said last time to let him know as soon as it happens again. (He works at a different hospital to the one we were at today - a children’s hospital we were transferred to last time)

I have no advice but this must be so scary. Keep pushing for your boy. You are doing the right thing.

Definitely something now wrong, push, push push for second opinions and more investigations. Xx

I was hospitalised for something similar when I was a child. I started throwing up blood and the doctors had no idea where it was coming from. Randomly in the end it was caused by a burst blood vessel in my nose. Instead of it causing nosebleeds, the blood was running down the back of my throat and I was swallowing it then throwing it up. It stopped completely once my nose was cauterised.

This was about 35yrs ago so I'm sketchy on the finer details, and obviously I've no idea if this is the cause of your child's vomiting, just thought I'd put it out there in case it was a possibility.

I think you urgently need to push on this. I’m not medical, but I do have a son who nearly died of different medical issues as a baby because doctors did not take it seriously enough. It’s good that he’s had an endoscopy, but I would be pushing and pushing for answers. If his iron is low, he’s losing a marked amount of blood. It sucks having to be that parent (I even had receptionists shout at me over the phone despite me being very polite), but I saw it as I was the only way my son had to communicate how much pain he was in and how hard it was. I would say to them straight, “No, I’m not happy to monitor. [Son’s name] needs answers. Babies do not vomit blood for no reason. We know his iron levels drop after, so it’s a significant amount. This is something we need to solve as soon as possible.” If you have to complain or take it higher, don’t be afraid to do so. Being ‘those parents’ doesn’t matter one jot. Unfortunately, at the moment, it seems you have to be those parents to get anywhere a large amount of the time. It doesn’t reflect on how ill your child is, only the funding, staffing and communication issues in the NHS themselves.

Definitely let the consultant know straight away when it occurs as they may be able to get clearer info at the time it’s occurring. Id think they may admit him to investigate and, if you think that’s likely, it might help to have a bag ready. I used to keep a hospital bag pre-packed to reduce the stress of going unexpectedly. It just meant I had those fresh clothes ready for us should we need it and knew what I was taking to keep us occupied.

When you speak to doctors, be clear with them that you are calm and can see there is a problem and you’d like to know which diagnoses they’re looking at and what the next steps are. I found taking notes helpful and keeping copies of all tests done (it’s surprising how often a doctor doesn’t have access to one or hasn’t received it and process can be sped up if you’ve got it). You might do all of that, anyway but thought it was worth mentioning as I remember being a sleep deprived mum of a not well baby!

I really hope your son gets the treatment he needs and you both get some answers. Even after my experience with my ds, I’m still shocked at the lack of action by the doctors in this situation. If they don’t know what’s causing it, they cannot rule out something that could become very serious. Equally, they need to be communicating with you if they have reason to feel reassured that it’s something unserious. Very tricky situation for you.

Thank you everyone for your support!

@WeeLors thats really interesting and I’m glad you got it all sorted it the end. My little one’s vomit is very dark so the doctors believe it is being somewhat digested before coming back up. I suppose, it could be like your case was and he’s swallowing it and then vomiting it up again. Definitely something to consider - thank you!

@MagpieSong Thank you so so much for writing such a detailed response! It means a lot. Even to know that we are doing all the right things makes me feel better.

The doctors that we have seen along this journey have been so lovely and supportive but we are stuck in this cycle of being unwell and vomiting blood so needing to go to hospital to then not vomiting for a few days so being discharged. Then nothing being found on any tests etc! But there needs to be a next step in place for this as it cannot keep happening.

We have a bag packed already just in case and all of his notes in a bag near that - we forgot to take said bag with notes in it yesterday in our rush to leave but the idea was there!!

I really appreciate it.

This was just one of the episodes from yesterday - he’d had plain food all day so nothing dark.

I think he possibly did this about 7 times yesterday until he was given anti sickness meds at hospital.

How worrying for you and his Dad OP. I agree with a PP that I’d want to ask for a second opinion and keep pushing for further investigations. Tell them you’re no longer happy to just wait and see if it happens again.

Agree with PP - if he's vomiting blood, there's something fundamentally not right. It's not enough to run tests and say 'it's nothing we've found so it can't be that bad - we'll watch'.

It's never going to be anything but not right so they need to keep looking until they find the problem!

😢 Seen your update - the poor thing. I hope it's resolved soon x

Also regarding the idea about nose bleeds - my DS gets them lots more in hot weather so it ties in, potentially.

I have nothing to add except to say what a shame. I feel sorry for you all having to deal with that. Poor wee soul.

Your poor baby. I hope he's okay. Is there anyway you can catch the vomit in a bowl and take it to hospital for a check?

Looks like coffee grounds vomiting. I hope they start testing for reasons this is happening. For goodness sake he's a baby!
I'm so sorry OP. Agree with PP, be THAT parent. Though you bloody well shouldn't need to be.

Dont worry about going 'that parent'. The consultant told you to contact him and you should 100% do that. If he is away you need to find out who can help instead.

I have no idea what this all means but you need to get it checked out by an expert. Sure everyone's being lovely, but they're not resolving it.

Good luck. I hope your little boy gets better. x

Don't worry about being that parent OP, it doesn't matter a jot. To get anything nowadays you have to shout and get your voice heard. Be a total Karen. It's the only way sometimes.

Keep pushing for answers. "No, this is not an acceptable outcome for X. Please refer us for a second opinion. We won't be leaving until we have a plan in place." Talk to PALs.

You're welcome. I’m just so sorry you’re all in this position. Definitely show the consultant that photo. It’s tough to remain calm when advocating, but if you can write down all your points before seeing the doctor it helps. Any patterns in what happens, any position he tends to take prior (pulling legs up to tummy, rolling on side etc), whether his cry is different (high pitched, low and moaning sound, louder than normal, quieter than normal, any abnormal sounds like bubbling or ugh when crying), any area that seems sore if touched, slow weight gain or less wet or dirty nappies. Videos and photos feel intrusive, but can help. All these things will help point them towards a cause. If he has slow weight gain, you can also remind them this is failure to thrive and push them on urgently needing answers this way. Defo contact PALS if you’re in hospital and explain that although you are glad his immediate symptoms are being treated, you feel the cause urgently needs establishing and that the doctors need to be frank and clear with you on where their thoughts are for diagnosis and next steps. It feels terrifying and never ending when you’re in that position, but the answers will come if you keep pushing them. Never be afraid to ask questions about why they believe a medicine is working or why a medicine that seemed to work has been changed or similar (often a nurse will say you need to wait to speak to doctor, but they can call them if it’s an urgent query). Also, don’t be afraid to question the release, “I’m concerned we haven’t got to the bottom of this and it’s happening x amount of times a week/month. Would it be possible to keep him in and establish what is happening?” They don’t often agree, but they do see it in notes and ime sometimes make decisions later that include your concerns. If you can, buy a little pocket diary and record the appointments, tests, doctors names and symptoms in there - sometimes that can help point out patterns and also help doctors visualise the frequency. It also helps when you’re tired and they say ‘when did he have such and such investigation’ or ‘have you seen Dr A yet’. Really hope all is resolved soon for you and your little boy. You must all feel totally wrung out xxx

Can i ask if he is still breastfed?
My son was vomitting coffee grounds and it turned out i was feeding him blood as i had mastitis without knowing. I didnt have pain but was clearly bleeding in a milk duct.

But if hee is feeling unwell and has dark vomit keep on an on. I hope you get an answer and a cure soon.

Thank you so much everyone - sorry for the delayed reply! I finally fell asleep last night and then was working today.

I stopped breastfeeding him a couple of months ago so I did think that it could have been that from the first few episodes but it’s definitely not! The doctors said there’s too much of it to be that too so at least that’s one thing we can rule out.

I rang the paediatric surgical secretaries at hospital 2 today (where he had his endoscopy) and asked them to put me in touch with the surgeon who has previously told us to go back/he’d follow up. I also rang hospital 1 and they were lovely and actually managed to get a phone appointment with the named paediatric consultant we are under. She is doing all of the chasing for us from there end now as it’s more of a specialist job that hospital 2 can do but hospital 1 cannot. So she’s going to liaise with hospital 2 to try and get us a solid plan going forward and to get us an appointment ASAP to discuss this with the surgical team.

Its not huge progress but I feel heard!

Best of luck. Hope it's resolved soon.

So pleased you feel heard! Really hope it moves forward for you both from here xxx

So after various chasing and speaking with both hospitals, we now have a plan! But I’m also incredibly frustrated and upset and I need to rant - sorry MN!

The long and short of it is that hospital 1 should have transferred us to hospital 2 immediately a couple of weeks ago when we were in with episode 4 of this sickness but they didn’t for one reason or another. Both hospitals are now saying that they can’t really do much until he presents with blood in his sick again as they won’t find anything on a scope (they didn’t find anything last time) So now we are waiting for this to happen for a 5th time?!

So I cried when they said this as I feel so helpless but they have no given us a written plan for what’s happening next time.

I just wish there was more I could do!

(thanks for reading the update!)

Hello, just stumbled across your post.
My son has the same symptoms and no one can find an answer. Did you manage to get to the bottom of your little ones sickness?

Hi @ToastReaper - I hope you are all okay. Private message me if you want to talk more - I’m happy to send you some pictures if that helps you to see if it is similar?

Unfortunately, we still haven’t had any answers. However, he hasn’t done it since the end of June 2023! So he had 4 episodes (lasting 1-5 days multiple times a day) and then hasn’t done it again since. we are hoping it’s something he has grown out of (he turned 2 today!!) but it’s very frustrating and unsettling that we never got an answer xx