4 yo with very high (over 6000) faecal calprotectin

[Alyosha]

My 4 yo DS has been having episodes of blood in his stools since March this year. He's otherwise extremely well, happy, bouncy, full of energy, growing well (+3cm and 500g in a month...) no stomach aches, diarrhoea or anything else. He has an anal fissure which the GP thought might be causing his symptoms, and he's on movicol 1 sachet a day to try and soften his poo - he tends to have massive, solid poos about twice a day. The blood can be super dramatic over the course of a few days and then goes away again for 2-3 weeks plus. No change in his mood/energy/other symptoms when it happens either.

Even on the movicol he's still having mostly solid poos. His blood tests came back normal so we did the calprotectin as a "belt and braces" style thing to rule out anything else... But lo and behold it has come back so extremely high. We had to get it done privately as the CCG in our area don't cover it for kids.

I'm so worried now - what on earth could it be? Presumably some kind of crohn's/colitis (but again, no other symptoms at all, not even loose poos/tummy aches...).

Anyone had this and can shed any light?? I'm (not so quietly) panicking. Back to the GP first thing tomorrow to try and get a referral to paediatrics again, the first time they fobbed us off with the movicol...perhaps we will finally get an NHS appointment this way!

@Alyosha Don't panic! The FB group tends to get used when people have a problem or their child is v unwell - it's not necessarily reflective of how a normal IBD journey goes in the day-to-day. I advised staying away from the US version because the cynic in me thinks their medics over-medicate/treat for profit, which results in kids having treatments and interventions non-stop. Most people go for months/years at a time on the UK group posting nothing because all is well. My own DS is diagnosed with pancolitis but the worst ramifications he has had since diagnosis 3 years ago were a period of low iron and feeling exhausted, which was rectified once we worked out what the problem was. He takes one medication each morning, which is effortless, and has stayed pretty well. The fact that your DC is generally well is a good sign. He might just need some treatment to reduce the inflammation, which will lessen the chances of his experiencing symptoms, and it won't necessarily become a major problem.

@Biscuitsneeded thank you so much for that, I know of course people only use it when their kids have issues. But it's hard knowing that logically and then seeing so many difficult stories. As you say people aren't going to post "all is well" posts! So glad your son is doing well, crossed fingers it will be the same for us. I am so concerned about the side effects of medications, but again you only see the worst case stories. I must remember I almost didn't start the pill because of the horrific stories people told, same dynamic, many/most are fine. Thank you again, I really appreciate hearing the more positive side of things!

Just to add my son has no side effects at all from medication. If diagnosed, your DS may start on the least fierce type of medication, and given he's mostly well, that may be enough. He might not need steroids etc - mine didn't.

First two things to pop into my head when read your post was Chrons or Coeliac disease has he been tested for that ? .

@ScoobyBooby Coeliac disease, no, but you're not the first person to say that. I don't think you typically get such high Calprotectin with that tbh. He's also fine with gluten usually, just in Pizza that it seems to case blood, perhaps due to how big his poo is!

@Biscuitsneeded that's really reassuring to know, thank you!

Hmm I thought (could be totally wrong !) Might be worth getting it checked anyways to cover all basis. Hope you get answers for your son soon! x

Sorry that should have read I thought it did in untreated CD .

Not according to my frantic googling last night although I accept that's not definitive!!

@Alyosha dont join that group just yet you may not even need to be in that group at all. Even after my son's diognosis I joined it then had ti leave as it did make me feel worse but after a year or so I rejoined as I now know every one's case is very different.

there was a lady on there who joined and it was just polyps so it could well be the case for now.

Try and not to google - I know it's hard I drove myself mad with google.

whwn is your appointment?

That's good to know, I searched "polyp" and saw one woman had joined when it was only polyps. Also, of course most people only join after diagnosis so won't be many for whom it was something else. I made a post because I can't help myself, looks like one woman has had similar experience to me, which is weirdly reassuring! Will stay off it now until we know more. Appointment is end of September, via phone. Son continues well, usually does 1-2 poos a day but did only no poos yesterday which augurs poorly...usually that means a mega bloody poo incoming :( and after 2.5 weeks of no blood too! Perhaps we should up him to to two movicol sachets daily.

Hello there.

I would just like to reassure you as my daughter was diagnosed with crohns disease age 12.
She had a colonoscopy and endoscopy and honestly the prep and the procedure itself is really not that bad at all. I only wish I had known that beforehand as I was a wreck.
Please do not google or join any groups until you know the outcome. Otherwise all you will read about are worst case scenarios which will only drag you down.

Let ne tell you my daughter is now almost 18 and she has had the most amazon 5 years of living a normal active life. The treatment for IBD has come on so much. My daughter went into remission just weeks after treatment and is now on maintenence treatment.

In 5 years she npever lost a day off school only for hospital appointments which were very few. She has been on a skiing trip with school, French trips etc,never had to miss out on anything. She is now going into year 13 at sixth form. Her GCSE'S grades were amazing.
Telling you all this to help you understand just how well children can live a normal active life even with IBD.

For the last 5 years her calprotectin reading has been below 30,apparently that is probably better than mist adults without the disease.

I am not saying your child will get an IBD diagnosis but just wanted to reassure as I know exactly the stories you will have come across.

All the very best with it all and just remember try not to think touch about worse case scenarios.

Sorry for errors but I never know how to edit on these chats.

@Lbet thank you so much for taking the time to share that with me, I really appreciate every positive story. I've been diligently practicing mental hygiene and taking a "worrying doesn't change anything" mindset. I am really touched by how many have given me encouragement. It's really kind. Glad your daughter is doing so well!

Hi @alyosha just wondering how you go down the private pathway? My ds has had diarrhea and stomach pain (extreme) for over 15 months now and we aren't getting very far. Ultrasound at the end of Aug but I'm wondering if private could help us rule out things or do further tests

Have you managed to get a faecal calprotectin on the NHS? We couldn't get one through our GP, got it privately and that opened the door to an NHS paeds gastro referral. Who have you been referred to?

We saw a private paeds gastro who prescribed Movicol for us, as he saw a fissure. He also did a head to toe examination which was all normal. If you're in London I can recommend him, he was great.

Hearing these stories really frustrates me. I hear so many stories where GPS dismiss parents and children with symptoms.

It was the dental hospital that first mentioned my daughters mouth ulcers could be IBD and reffered her to the gastro dept at our local children's hospital.
It was there that our consultant told us there are many GPS that send children on their way telling them that their symptoms are IBS. That's because test like blood tests and stool tests cost the gp surgery to do them. So children are left to suffer and in the meantime damage is going on in their gut.

Us parents have to be our children's voices and fight to be taken seriously. Keep pestering your GPS to listen to you, it is us parents that know when something isn't right with our children.

I will never forgive our gp for dismissing my daughters symptoms for over a year. I can only thank our own dentist for referring my daughter to a dental hospital to have her mouth ulcers looked at.

Our GP literally can't order the test - our CCG doesn't let them. I think it's outrageous and I can't understand the rationale for it. It's only the fact we had the means to pay for it privately that kick started this. To be fair, our GP would have referred us back to paediatrics probably, and Evelina apparently accepts GP referrals for just blood in stool.

Lucky your daughter's dentist identified those mouth ulcers!

Once diagnosed they do calpro very regularly. DD seems to have to produce twice a year (while well). I think it's a pretty cheap test, weird of your CCCG.

Sounds like a postcode lottery. Round here, GPs can indeed do faecal calprotectin.

It's just for paediatric patients. I think the idea is they are supposed to refer any symptoms to paediatrics. One presumes the idea is that just having low calprotectin doesn't mean you don't need investigations, and borderline calprotectin can result in unnecessary referral to paeds gastro while missing the wider picture.

In reality it just means you get the runaround for months being told "it's a fissure" unless you literally turn up to the surgery and demand a referral every day.

No, I mean that GPs locally can order faecal calprotectin in children. It's really helpful for triaging the urgency of paediatric referrals for gastro problems.

Yes, I appreciate this is not a blanket NHS policy. I was imagining the thinking behind our CCG or ICB as it may be now not allowing faecal calprotectin tests for under 16s.

It took ages for my gp to get a fecal calprotectin done for my son - several gp's saying it was a fissure yet I could see nothing myself when examined by gp. Went to A&E they said a fissure, we couldn't - prescribed movicol but never got my son To take it because I knew he wasn't constipated. Finally they ordered a stool test then it all happened very quick from there!

my friend daughter had bloody stools and I told her to tell gp to do a stool test right away which they did it should be gp first to as rules IBD out and it's cheap!

Totally agree and especially how big IBD has become in children. I really don't understand why a stool test is not requested by GPS when parents are taking their children in to see them with symptoms of IBD.

In our GPs case it's because they can't, there is no drop down to select it as a test for patients under 16, this is the same for all the GP surgeries in my area of London. A locum GP from another but of London was very put out by this.

I am not sure what evidence this guideline is based on and may try and FOI it.