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!

Like @trampoline123 I have ulcerative colitis but normal bloods, and was only diagnosed after a colonoscopy, by which time I was critically ill. Mine was very severe on diagnosis but is now in complete remission (for 12 years so far) on just one low dose of medication per day, so your DH's friend's case isn't necessarily the only outcome if your DS does have IBD. Hopefully it's not though. Sending a handhold while you wait.

Thank you - I am very much in the market for positive stories!

If he were to be diagnosed with Crohn's are we looking at. 6-8 week all.liquid diet even with mild symptoms? Presumably it's related to location if inflammation

I was never out on a liquid diet. Had nutrient shakes at one point but not a strict liquid diet.

I've never had a liquid diet either. I had to avoid spicy food and peel fruit and veg at first, but now I can eat anything except leeks and very garlicky things.

Yes, they put children on a liquid diet for 8 weeks as first line treatment if they have Crohn's (though lots of bleeding I think more likely to be UC, which they don't do liquid diet for, they do steroids first I think).

If you are diagnosed as an adult much less likely to do liquid diet.

Thanks. UC treatment seems more tolerable if inflammation is confined to rectum (suppositories/enemas/rectal foam). We'll wait and see!

Anyone actually had a polyp with these numbers or should I snap myself into acceptance that it is most likely IBD now...

My son was diagnosed with crohns when he was 8 after at least two years of symptoms and doctors being totally dismissive! My son's original symptoms were mainly constipation. He has never had the bleeding. He also had impetigo type rash around his mouth and sores [ similar to cold sores ] which didn't go. His bloods even now don't show inflammation, it is only ever a cal protectin test which shows this. He is now 22 and doing really well, so we have been dealing with this for many years.

When first diagnosed he went straight onto azathioprine, steroids and pentasa. Now days it seems that they start them on the liquid only diet which really helps give bowels a rest.

@Alyosha with the symptoms and cal protectin levels it does sound like some form of IBD. You will need a colonoscopy to find out which one.

GP rang me this morning to say he has made an urgent referral - phew!

He displayed an admirable interest in the underlying pathology too and asked me what the private gastroentorogist thought was likely. Our private gastro thinks polyp more likely at the moment.

So waiting on referral now and hopefully will hear something soon.

Are they going to do another stool test?

generally with such high levels esp as he has a fissure it does point to crohns.

my teenager has ulcerated colitis and is doing very well currently. His calprotectin was 2100

.. it could also be a polyp they thought my son had that as he was still growing etc and no pain but I knew in my gut with high number it was v likely IBD.

Haven't heard from the hospital yet, so assuming they will repeat. As you say fissure as well is bad sign.

I will say he had a dramatic bleeding episode two weeks ago where he had three painless bowel movements consisting of blood, clots and tissue only. Following that he has had no blood for two weeks. It made me wonder if he was passing an autoamputated polyp. We went to the GP after this and the GP said a fissure could cause it, however!

My son also passed blood on and off but seemed very well in himself, however the day he went in for scopes they did a blood test and he was very anemic at this point. All other tests were fine prior this so it's good you are keeping on top of this!

He wasn't anaemic in May but who knows now. Hopefully still not...

Just coming on to say my son has a diagnosis of pancolitis. He has never once had any dodgy blood tests (apart from a few iron issues) but he had a lot of tummy aches which were the initial reason I contacted the GP. Phoned GP about them in lockdown and she was amazing and ordered calpro test as routine. This came back v high and he was seen by paediatric gastroenterology within a couple of weeks and rostered for confirmatory scopes the following week. He started treatment not long after that and has mostly been really well ever since. I can't believe calpro tests aren't the first line of enquiry under primary care anywhere - that's appalling. They are so easy to do and yield so much vital info that blood tests might miss.

Yup, they are unavailable for us in primary care. Think our GP would have referred to secondary care for one had I kept nagging though. But I think that would have taken a long time for an appointment given how well DS is.

GP has referred us to Evelina's paediatric gastroentorogy directly! First appointment will be via telephone though. Anyone know what happens after that?

Great that you have got a direct referral to gastro - we had to go through general paeds first. I assume they might say given the blood and the high calprotectin he needs endoscopy and colonoscopy and book him in. My son’s first appointment with gastro was telephone and basically you need scopes to have a diagnosis.

Thanks, are they any good? I always worry with a "name" institution you get a lot of egos potentially standing in the way if patient care. Like the GOSH gastro issues...

Overthinking this I'm sure

Sorry wasn’t clear, son is not an Evelina but at Alder Hey which is equally a well known children’s hospital. No egos there, hopefully you will find the same.

Thank you, I am really finding the referral quite tough! Seems to make it all really real. Dreading the colonoscopy prep and I have a lot of questions about it so will get on the FB page that has been recommended

My son went to the Evelina and they are great!

For all of us parents that go through this it's so emotionally challenging but you are on the right path for a diagnosis.

I suspect they will want to schedule scopes

the Facebook group is fab please join and you wiii get so much support x

I recommend joining the UK parents of kids with.....FB group. The American one is frankly a little overwhelming and my personal impression is that things are done very differently there. The UK group is great and people are v willing to share information.

This is interesting to read, hope your little boy gets on okay. Sending lots of luck!!

My daughter suddenly broke out in an odd rash, mouth ulcers, impetigo type rash, constipation and blood two weeks ago. The GP is doing calprotection testing.

Thanks everyone, have joined the UK FB group which seems lovely, but also has made me feel about 100x worse than I did before! Think I might need to leave or hide it because I now feel considerably more pessimistic about what the future might hold. Even if that's realistic I think for my own mental health taking it as it comes might be better for me.