Please read my 6yo symptoms and tell me if I'm being dramatic ... or if there's something wrong with him.

[mayaknew]

I'm just going to bullet point them for quickness...

-severe constipation
-loose stools
-tummy pain
-heartburn/reflux
-nausea
-vomiting
-anal fissure
-urgent need to move bowels
-soiling
-spend long time moving bowels... never feels "finished"

All obvious tests have came back negative. Waiting list to see gastroenterology but will be after new year before we see them. I'm at my wits end.

Thanks that's really helpful.

I don't know why the gp or paediatrician haven't mentioned impaction.

Mention the NICE guidelines and push for a referral. We had to go to the school nursing team first and then onto the bladder and bowel nurse.

He's got a referall but the waiting times are ridiculous right now. He won't be seen til next year.

Oh no, in that case definitely take a look at the ERIC website for help in the meantime.

Sorry, i have just read your OP. I meant push for a referral to the bladder and bowel clinic. Not gastroenteology.

If he’s intolerant to dairy, a milk allergy test will not pick it up because it’s not an allergic reaction.

What was he like as a baby?

you need to put as much pressure on as you can to get the appointment bought forward. speak to the school, get them to write to his consultant about how this affecting his education. go and see your doctor more often. write to your MP setting all of this out. write to the PALS at the hospital basically make an absolute nuisance of yourself. if you can afford it then I would get the scans done privately. a private diagnosis which is then followed up by the NHS is the way to go if you can afford it.

I'm pretty sure this won't be it but have you looked up Hirschsprung's disease?
It's usually picked up immediately in babies that are unable to poo. But it can occur in older children. My friends 4yo has it. BUT I believe it's pretty rare.

Great advice here I also recommend looking at the poo nurses video clip
Constipation is one of the biggest reasons children are admitted to hospital- yet a lot of gps don't seem to see it as serious- keep going back to your gp and asking them to review the medication if diet and fluids are all ok . The school nurse team can also support you they will focus on fluids, fibre, toilet routines and exercises such as blowing bubbles to relax the bowel, checking positioning on the loo , trying for a poo twenty minutes after a meal ...you may be doing all this already but some gps insist on going through school nursing before referring further on

Thanks this is all really helpful.

I can't even believe I am writing this but when all his tests came back clear a part of me was actually disappointed. I know that sounds terrible and obviously I never ever wanted him to have crohns/coeliac or anything lifelong, but the fact he was finally tested I was do happy because I thought we were going to get answers. When we were left with nothing I just felt so frustrated. Like it was a waste of time. I know it wasn't because it's ruled all those things out. I just don't know what to do with him 😥

Have you kept a dairy yet? We were asked to do so by the school nursing team. It may help you push your case with the GP. We had to log time and volume of all wees and also time size and type of poo according to the bristol stool chart.

I agree with the impaction suggestion too.

My dd had similar (but not as severe) symptoms, took years of being fobbed off and just treating constipation (rather than the cause). Eventually got loads of tests done and all came back clear - I had a similar irrational reaction of disappointment! From food elimination it became very apparent she is intolerant to dairy and soy milk. We did a massive clear out with movical (a week spent in the house. Tmi... but it just kept coming I couldn't believe how much she had inside her!) And then daily doses for a while, reduced gradually and a year later she's fine.

Incidently if I give her either milk or soya now it takes about 2 weeks for the symptoms to present themselves, but they still do.

If I were you, while waiting for a referral, I'd do a massive clear out, daily doses and start with fodmap. Good luck!

My DS had similar and it went on for months and months, he was still having bowel movements so I couldn't believe it when the Dr diagnosed it (having visited numerous dr's previously who hadn't diagnosed this). A 2 week dose of Movicol sorted him out.

It had compacted and his symptoms were
fatigue/breathlessness/dark rings under eyes/(didn't realise the joint pain could be part of it as well but yes he did, same as yours!) generally weak etc.

No stomach pain at all or what I would have considered to be stomach/bowel related complaints as I say he was going daily. The dr explained because it was so compacted it was just liquified faeces which was coming out.

And I had been giving him an inhaler left right and centre for his 'asthma' which wasn't! He has never touched his inhaler since having the movicol!

HTH and hope you get it sorted soon.

Movicol nor Lactulose so anything for me. High soses of Laxido do on a daily basis but now I take nightly spoonfuls of sodium picosulphate which walks like a charm. Had to push to get the liquid form though but now have it on repeat prescription.

Impaction is one of the most miserable, psinful and distressing conditions a child can suffer. It is shocking how many HCPs are clueless about it.
Tho poo nurses video is brilliant.
Well worth watching. I think the ERIC website has a contact point too.

I have just had a thought ....

A few of you have mentioned joint pain. He keeps saying his legs are sore but I keep telling him it's growing pains 🙈🙈

That could be growing pains, or a virus. Does he mention joint pain often or is it only recently?

My five year old DS had all those symptoms, apart from the vomiting and was more loose stools with some constipation and we were exactly the same as you, lots of hospital appointments, tested for Chrons, celiac etc, all came back negative. Like you, I was a little it disappointed we didn't have an answer!

After a years wait we got our appointment with a specialist at a big London Hospital, who asked us to keep a food diary and start excluding foods one by one, and to start with dairy and soya, I was really skeptable and lo and behold after three days he was not having any further problems, he was 3 at the time and I had delayed potty training as he couldn't hold his stools, after removing dairy and soya, we could finally crack that.

We slowly reintroduced soya which he was fine with and we have managed to work our way back up the dairy ladder to hard cheese. He still can't take milk or yoghurts. Although one day I am hopeful that he will be able to.

So ds appointment for paediatric gastroenterology has came through its next week.

Does anyone know what will happen at the first appointment? Will it just be a chat about his symptoms and what the Dr wants to do going forward or will the actually do any tests ? If they want him to get an ultrasound for example will that be another appointment or will it be done then?

Make sure you take a food and stool diary. Use the Bristol stool chart. Hopefully you have already been doing this.

I don't have an in depth food diary but I have notes of what makes him worse what helps etc etc any patterns I've noticed which is only that his reflux is worse when he's active and his stomach pains are worse in the morning.

You don't mention him being tested for Ulcerative Colitis OP.

That's what I have and alot of the symptoms you mention are what I have.

Would ulcerative colitis not raise calprotectin levels though? The same as crohns ?

Mayaknew - did you get anywhere with the Gastroenterologist?

I suspect megacolon.