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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

aibu to tell everyone I meet....

236 replies

LostMyBaubles · 02/03/2015 22:10

Or see about my dc? Esp the eldest?

With hope that they might know/ have experience of what im dealing with?

Do you?

Ds1 has been poorly since he was born.
Reflux, constipation, hes had ulcers in his mouth, blood in his poo, fed via feeding tune gastrostomy, autistic, asthma, Dairy allergy, lots of pain in tummy, blood in his aspirates (stomach fluids)

His main problem is the pain atm. Paracetamol doesnt do much.

hes under gastros. Hes seen every 3weeks.
Hes only4 :(
I just cant see him in so much pain.
Aibu?

OP posts:
TondelayoSchwarzkopf · 01/04/2015 08:36

I don't have anything helpful to add but Flowers for you and your lovely little boy.

Original poster
LostMyBaubles · 01/04/2015 15:08

Thank you.

Just think its awful that a 4yr old has to suffer like this.
He was so upset as the dr didnt fix his tummy

Dr said will call him back to clinic 2-3 weeks got appointment for 5weeks! So been in touch to say he was supposed to be in emergency clinic in2-3 not main outpatients in 5 weeks.

OP posts:
SpringTown46 · 01/04/2015 16:19

Send off your summary document, signed-for, as suggested. And take a copy (or three) when you go for that next appt.

Original poster
LostMyBaubles · 03/04/2015 09:26

Will do.

Hes in a bad mood and is very irritable.
He thinks his tummy will hurt forever and no one can fix it.

OP posts:
SpringTown46 · 03/04/2015 10:34

Did you contact PALs? Suggest you write to them, and also copy them in on your summary document letters to clinicians.

PixieHickies · 04/04/2015 04:09

I am so sorry for what your poor son is going through.

I was just wondering if anyone has suggested a fecal calprotectin test? It's non invasive (a stool sample) but it does test for Inflammatory Bowel Disease (Chrons, Collitis, etc).

Got everything crossed for you all getting an answer.

MrsSandler · 04/04/2015 05:26

Hi, I work with complex children and one of them suddenly started having blood in his aspirate and bowel movements, went on for months on and off, it turned out to be one of the meds he was on!! It was slowly shutting down his kidneys ?? so maybe worth looking into this a possible cause too.
I hope he get sorted soon x

Original poster
LostMyBaubles · 04/04/2015 21:14

Thank you mrs. Hes on a few different meds and I have kidney problems too. Hes had a urine specimen sent off so will see ifthat has aanything to go off.

Pixie they've never done that test on him! Which shocks me as its so easy to do
Will definitely mention that at next appt.

Didnt/havent had time to get in touch with pals :(
it turns 11am before I even get a chance toget some water down me with these lot!
It was 12.30 by time id managed to brush my hair lol

OP posts:
Original poster
LostMyBaubles · 05/04/2015 22:46

He woke up around 2hours ago complaining of painSad

OP posts:
Original poster
LostMyBaubles · 07/04/2015 09:15

Really not happy this morning.

I emailed last week to say im not happy about waiting 5 weeks to be seen when I know he can be seen in emergency clinic every Thursday. The dr has said she thinks may is ok and apologies to mum for the wait

ive emailed back asking for her to ring me.
This is beyond a joke.

His pain is less than before (where it was almost everyday its now every other day or maybe even every 2 days but still getting it)

arghhhh too early for this!

OP posts:
SpringTown46 · 07/04/2015 11:11

She is unlikely to ring. If you have got your summary documentation to hand, email it back in your reply; think about who you could copy in.

Original poster
LostMyBaubles · 07/04/2015 11:54

Shes emailed back saying lead consultant is on annual leave and that shes emailed him to get in touch.
We see his general paed on Friday but shes going to be reluctant to do anything major as she will probably just want to catch up with whats been going on.

Such a pita.

He said he wants to go to the park but his tummy his hurting.

OP posts:
PrettyPenguin · 07/04/2015 12:06

DON'T go giving him aloe vera. It can help some people with IBD, it can make others (like me) much much worse!

Your son sounds like he has Crohn's Disease to me. Have the doctors tried putting him on a liquid diet for a while (Ensure, Fortisip etc) for a while, to give his insides a bit of a rest?

There's a lovely FB group for those with IBD (Crohn's or colitis) that might prove to be of use to you, particularly in light of the fact that you don't have a confirmed diagnosis yet. The one I'm on is called Crohn's and Colitis UK Forum (there are about 12.5K members on there) and there are several members on there who are parents of children with CD or UC.

Good luck with getting a proper diagnosis and the appropriate medication for your son. IBD is a horrible disease and poorly understood by the general public. It can be extremely isolating, not just for the sufferers but for their carers too.

PrettyPenguin · 07/04/2015 12:09

PS - not all hospitals do the faecal calprotectin test but it's basically a much better indicator of inflammation levels in the gut. The usual blood tests (CRP and ESR) for inflammation are not much good a lot of the time. It's a real shame when there are so many Drs and consultants will only look at blood results when determining whether there is any inflammation going on in the body. I have inflammatory arthritis as well as ulcerative colitis and even when I'm at my worst, my bloods are all perfectly normal.

DeepDarkSecrets · 07/04/2015 14:49

Sorry to hear about your son, Lost. I hope he manages to get a firm diagnosis (and treatment) very soon. As previous posters have said - ask for the faecal calprotectin test, it's much more reliable than blood tests at giving an indication on what's going on in the body. Like Pretty, my blood work is always normal when I'm in a flare too (I have Crohn's).

Original poster
LostMyBaubles · 07/04/2015 16:02

Why can't these drs think of this??
I mentioned stool test otherwise hes never had one done ever before.

Wilk ask his general paed about this and she can send the results over to the gastro.

Took him to the park anyway to take his mind of things.

OP posts:
Original poster
LostMyBaubles · 07/04/2015 16:44

Think we found our culprit
c diff.

The stool sample I asked for to be sent off came back with c diff.

How the fuck did theymiss that over the last 8 appointments.

OP posts:
DeepDarkSecrets · 07/04/2015 18:54

It's still worth continuing with the investigations, IMO. People with IBD contract c diff frequently (although, having said that, I've never had it) and it can be a precursor to a flare, or the thing that triggers Crohn's. Certainly keep an eye on your son for the next 12 months or so because it may be that this is the beginning of something else (sorry to put a black cloud over it).

Hopefully, though, your son will recover from his infection and bounce back to perfect health very quickly.

DeepDarkSecrets · 07/04/2015 18:54

It's still worth continuing with the investigations, IMO. People with IBD contract c diff frequently (although, having said that, I've never had it) and it can be a precursor to a flare, or the thing that triggers Crohn's. Certainly keep an eye on your son for the next 12 months or so because it may be that this is the beginning of something else (sorry to put a black cloud over it).

Hopefully, though, your son will recover from his infection and bounce back to perfect health very quickly.

Original poster
LostMyBaubles · 07/04/2015 19:02

Definitely still keeping a close eye on him.

I told the dr if hes still getting pain in 2 weeks I want an emergency appointment for that day.

I dont think this is the end of it but another hurdle that we are overcoming.

I emailed the summary off this afternoon too.

OP posts:
SpringTown46 · 08/04/2015 08:43

Well done Flowers Hope he responds quickly to treatment now. I agree that you would be wise to pursue the ongoing investigations. Did they test stool for Crohn's too?

Original poster
LostMyBaubles · 09/04/2015 11:59

Thank you.

Nope they didnt do the test for crohns just for infection
I asked for copy of lab reports for the hosp tomorrow (diff dr from another hosp tomorrow)
And been told next time they need to be asked from the risk management department? Whats that Confused what'stthat got to do with having a copy of my sons results to show to another dr??

OP posts:
SpringTown46 · 09/04/2015 16:19

Keep asking questions and logging the responses:

why didn't they test stool previously?
why haven't they tested stool for crohns?
what do they mean by 'they need to be asked for from the risk management department' and why?

In other words, keep asking the questions until you get answers!

Original poster
LostMyBaubles · 09/04/2015 16:49

The dr once rang me and said you dont have to updatw my secretary all the time.
I think its relevant to keep the lead consultant updated with every change so nothing is missed out. Tbh I think they've not done their 100% to help.
A stool test is the easiest test to do. Why did they not do one? If I didn't suggest it they never would have done it.

Afaik im within every legal right to ask for report as im his mother.
Confused
mum thinks they are now saying this to cover their back as they know they have messed up.

OP posts:
PrettyPenguin · 09/04/2015 20:54

A stool test is to test for infections etc. It's very quick with results usually, less than a week I think, to grow all the relevant cultures.

The faecal calprotectin test is the one that tests for IBD markers for Crohn's and ulcerative colitis. It takes about 6 weeks usually for this one to get tested and sent back.

C Difficile and e coli are usually the first things tested for (in a stool sample) when there is persistent diahhroea and abdominal pains. The mind boggles why this wasn't done immediately...unless they lost it of course, which does sometimes happen.