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!

[nocoolnamesleft]

That is a very high calprotectin. Children quite often get a slightly high number with tummy bugs, or even with cows milk protein intolerance, but not to that extent. I'm afraid that it does indeed raise concerns about the possibility of inflammatory bowel disease (Crohn's or Ulcerative Colitis). You may find Crohn's & Colitis UK (crohnsandcolitis.org.uk) useful for information on these.

In fairness to your GP, in a child with massive solid poos and bright red blood loss, movicol (usually in rather larger amounts) would be the first line treatment by just about every doctor.

Given the level of the calprotectin I would expect a reasonably urgent referral to paediatrics. It is unlikely that your GP would be able to refer directly to paediatric gastroenterology, so it would probably be a general paediatrician in the first instance. At a lot of hospitals, to access a truly urgent appointment (ie within the next couple of weeks) the GP would need to ring the paediatric consultant covering the ward, though I don't know if this is the case for your area. I would consider that level of calprotectin to justify such an appointment.

At a paediatric appointment, the doctor is likely to ask a lot of detailed questions about the poo etc, do a general examination, and have a look in his mouth and at his bum. They are likely to want to organise some baseline bloods, and to repeat the calprotectin to see if there is a trend. It would be likely (though dependent upon the size of your local hospital) that other investigations would wait until he was actually seen by a paediatric gastroeneterologist.

Hope that answers some of your questions.

[Alyosha]

Thanks, that is helpful, though not what I wanted to hear! We paid privately to see a paediatric gastroentorogist already who ordered the calprotectin - our CCG doesn't cover it in primary care and the previous referral to paediatrics our GP do came back with advice and guidance on the movicol. Not enjoying the prospect of explaining all that!

We have a set of normal bloods already, albeit from May. Normal cpr and esr.

Is there a difference between the adult and child calprotectin test? I am half hoping it's a lab error and the adult calprotectin tests are much cheaper!

[MumofCrohnie]

Yes young children can have high calpro and not have ibd - but not that high, I don't think.

I would imagine he needs scopes OP. Possibly not desperately urgently if he has energy and growing etc. Is the anal fissure definitely a fissure, and not a fistula or abscess?

[nocoolnamesleft]

@MumofCrohnie

Yes young children can have high calpro and not have ibd - but not that high, I don't think.

I would imagine he needs scopes OP. Possibly not desperately urgently if he has energy and growing etc. Is the anal fissure definitely a fissure, and not a fistula or abscess?

Good question. Fissures are so common in constipation, but could be be such as an abscess if this were Crohn's. I agree he's highly likely to need scoping.

Faecal calprotectin levels, at least in my trust, are the same test for children and adults.

[Holidayhappiness]

So sorry to hear about your LO OP. I was diagnosed with Crohn’s at 22 but had problems with bowel movements all my life - v constipated as a child and a young adult but no pain at all until just before diagnosis.
That is a high reading but the good news is that there are some really good treatments now, so even if you get news you’d rather not have, hopefully your little one will be treated and the inflammation will calm down. Wishing you the best of luck.

[GoodInTheNeighborhood]

Did they run a c-reactive protein test yet?
That will show how much inflammation is in the bowel and will give y'all a much better picture of what is going on.
Very recently went through this my teen.
Truly hope all goes well for your little one and you.❤️

[Alyosha]

Thanks all, he isn't constipated at all and never has been really, 1-2 poos a day, often big but never painful for him. The fissure was examined by a private paediatric gastroentorogist who thought it was a fissure. Said doctor said his lack of abdominal pain, diarrhoea etc. made a polyp or a fissure more likely. He has no sores, skin issues, clubbing etc.

Had a normal set of bloods albeit in May. Hopefully we can get repeat faecal calprotectin on the NHS too.

Really reassuring to know that treatments are much better these days. I appreciate any reassuring stories anyone can give me!

Did not manage to get through to GP today so that is tomorrows task.

[Alyosha]

Although having said he has no skin issues he has recurrent facial impetigo and cold sores on his lip and he also has a lump on his eye we are having investigated. And he had an infantile hemangioma which has fallen off over a year ago! Furious googling sent me into a worry spiral that DS had some kind of familial polyposis disorder, which is I know is extremely unlikely.

[Thisgooddog]

I got diagnosed with crohns (as an adult) on the basis of the calprotectin result after being fobbed off for weeks with drs and nurses suggesting my pain was wind/ovulation pain etc. Push for that referral OP.

[RainbowUtensils]

I don't know about calprotectin or crohns, but it sounds to me that he's got some kind of immune system issue going on with the cold sores and the impetigo. I've got coeliac disease, and whenever I've accidentally had gluten or if I'm really run down, I have various skin flare ups as my immune system is struggling. Hope you can find out the underlying issue soon

[Thisgooddog]

Crohns is autoimmune so that does make sense.

[Zebee]

Both my kids have Crohn’s (although started with symptoms at around 8) my son only had blood in his poo nothing else. The good news is that he is well so if it takes a little while to get a diagnosis then at least he isn’t suffering. He will need a colonoscopy and endoscopy for clear diagnosis. I would suggest that if you are on Facebook you join the group for UK parents of IBD kids (something like that title) it has been invaluable for me and helps me feel like I am not the only one.

[Alyosha]

Thanks Zebee, were your kids well too? How are they doing today?

My son went to three playgrounds, the funfair and swimming yesterday, woke up an hour early this morning because he has "so much energy mummy!", and ate his bodyweight in food today and yesterday. Weighed him and measured him and he continues on the 9-25 as he has since 6 weeks old. Has had no blood for two weeks but it does come and go. Hoping we get an early diagnosis, but also hoping against hope that it isn't IBD!
GP was supposed to ring yesterday but didn't sadly. Just want to get referred to Paediatrics now..again

[Zebee]

Son was perfectly well, although interestingly he tracks a higher weight percentile he is doing really well on treatment and you wouldn’t know there is anything wrong with him. (Daughter is different but it can vary, just started new treatment so hopefully she will soon be the same.).

Be kind to yourself it is really stressful and waits for answers can be really tricky. Easier said than done but try to focus on him being well now.

[Alyosha]

Thanks so much, that really helps. I am worried my younger son could have it too, he's only 2 with no symptoms (unless being a horrifically picky eater is a symptom!). Getting ahead of myself as there is no diagnosis yet - I'm happy he is well but also worried he may become unwell the longer I try to get his GP and Paediatrics to take us seriously!

My husband is either in denial one day or extremely upset another day. A good friend of his (35) has Crohn's and has really suffered with it. He had surgery to get a stoma recently and was unwell for months, so my husband is assuming that is the universal experience with Crohn's l, although I've told him treatments are better these days (based on hope more than actual knowledge!).

[webuiltthiscityonrockandwheat]

Absolutely he needs to be checked. Ask your GP to do an urgent referral to paediatric gastroenterology. My DS had the same. On admission to hospital his calprotectin level was 8000 and he was diagnosed with moderately severe pancolitis after scopes.
With medication he's mostly well although his calprotectin levels are creeping back up

[webuiltthiscityonrockandwheat]

And I agree with Zebee, that Facebook group is fantastic and such a great support to me

[Alyosha]

Thanks both.

We have been to our GP about 8 times since March. Our initial referral to paediatrics came back with advice and guidance on Movicol. We didn't feel this was the issue, as he was never really constipated and had no pain pooing. We finally went to a private paediatric gastroenterologist who felt it could be due to our son having very large diameter stools. He also saw a fissure, so we started him on the Movicol. So far it hasn't really changed the pattern - blood for two to five days, followed by a period of no blood of up to three weeks, followed by blood again.

A few weeks ago he had large bowel movements followed by pooing only blood & tissue twice. This was after eating pizza (and having his morning glug of movicol), and we have noted blood after pizza a few times now. Doesn't co-occur with cheese on toast, or pasta and cheese or any other similar dairy/carb combo.

So this put the rocket under us to get the calprotectin test, which we have not been able to get through our GP - our CCG doesn't offer it in primary care! I begged to be referred back to paediatrics but GP refused, even after seeing what I felt was a very dramatic picture of our son's "only blood" bowel motions. GP advised this was possible with a fissure. So off we trotted to get a private test, which has come back high.

Immediately went back to the GP who appeared to finally take us seriously - hopefully they've just decided to refer us back to paediatrics without needing a phone call, but will hassle them until they agree to refer him. They think because he's well it can't possibly be anything serious.

Our private paediatric gastroenterologist has been very nice via Whatsapp and has said the test needs to be repeated, possible it's Crohn's or UC, but he thinks it could still be a polyp as these do sometimes present with high calprotectin. Said it was unlikely to be a bacterial infection because these present with diarrhoea. My denial is taking the form of wondering if his fissure could be infected with impetigo bacteria - I have heard this can cause blood in stools and any bacterial infection can surely cause high inflammation? The perianal area is a little red too.

It really does make you worry what happens to kids without parents with the money to pay for private tests/jobs that allow them to drop everything and take kids to the GP 8 times in four months.

[webuiltthiscityonrockandwheat]

My son had the same pattern. 3-4 days of blood and then nothing for a few weeks. After the third bout of bleeding he really went downhill and we took him to A&E where he was admitted for 10 days. If you're worried take him to A&E, in the Facebook group there's a lot of parents who haven't been taken seriously until they turn up to the hospital

[Alyosha]

The last round of bleeding was his 7th of 8th, I've lost count. We haven't taken him to A&E because he is otherwise completely fine (even with a bowel movement that was entirely blood and tissue - I kind of hoped this was him expelling a polyp...probably not given how high his calprotectin still is), and I do think the risk of e.g. hospital acquired infections is probably higher than the risk of him not being diagnosed for another few months. Mind you, if the GP continues to fob us off much longer I'm going straight to the hospital where I know paeds gastro is run in our trust in the hope of a direct referral.

[Madhoney]

I had a FCP over 6000 and a colonoscopy revealed proctitis. The consultant said that it's a sensitive test but not very specific, so one patient could have very severe disease with a relatively low result, whilst another could have mild disease with a very high result.

[Alyosha]

I thought calprotectin levels were used to track disease progression? Or is that after a certain number it just means "lots of inflammation"?

[MumofCrohnie]

Low numbers are always good and higher than 250 indicate inflammation, but I don't think beyond a certain point that high numbers necessarily exactly track disease severity. For example if you have mostly small intensinal Crohn's that doesn't tend to make the calpro as high.

[Alyosha]

Got it, thanks. My googling has led me to discover polyps which have presented with calprotectin in the 2000-5000 range which seems similar to what we have going on.

Let me cling onto this denial a little longer...

Checking back through red book son has actually accelerated growth since symptoms first appeared (albeit mildly..from 9th to 20th for weight and 9th to 30th for height)- although having heard the other stories in this thread I appreciate this means nothing other than we are lucky he is still well.

[trampoline123]

I just wanted to come on and say blood tests aren't always accurate with inflammation markers.
I have ulcerative colitis and my bloods were all normal when I was going to the loo 30+ times a day with lots of blood. Only the fecal test is accurate for me.

Keep following up if he's still having symptoms but bloods are fine.