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!

Are you taking photos of the bloody stool and the blood and mucus? This can be useful for showing your specialist what is going on.

Good luck with it all. It's exhausting chasing a diagnosis.

Yup, have a lovely folder on my phone titled "poo"! He hasn't had any blood or mucous for the last three weeks though following the day where he had three normal poos followed by three poos that were just blood and clots (is it false hope to think this most dramatic episode of bleeding was a juvenile polyp autoamputating?). Prior to this he had another 3 weeks of no blood (polyp being deprived of its blood supply maybe??? Yes I'm being ridiculous).

Got a mild virus along with his brother now (roseola or hfm) and had some blood in his toothpaste for the first time ever...I hope that's just a one off. Otherwise continues to eat enough food for an army, remains bouncy and is doing 1-2 poos a day still. He is still on the movicol which I think we will continue as it does make his poos a bit smaller which would help with a fissure whatever the cause.

It's a glamorous life this life as a bowel parent isn't it? All I know about polyps is that my kid had some bleeding in his stool and his gastro found a place where a polyp had separated when she did a colonoscopy a week or so later. The two were not connected though, she was scoping for other fun things.

I feel like I have read about 80% of papers on existence about juvenile polyps. The glamorous life indeed! the thing everyone on this thread has said is right, have to focus on DS being happy, feeling well and having lots of energy. Indeed he asked his dad to do a mini world athletics championship for him today, including a high jump, long jump and ten laps of our garden.

Well the fact that he is so well is amazing. Bowel disease can really take over and destroy quality of life so long may it last for your guy.

I think the word CAN is a word parents waiting on a diagnosis of any kind needs to do their best to take lightly. I only wish I had on diagnosis of my daughters diagnosis of crohns disease.
I saw the CAN as Will and it led me to several months of waiting for the disease to take over my daughters life, however it did quite the opposite and has so far she has led a normal very active life. I know this is not the case for everyone with the disease but best not to be stopped in your tracks waiting for the worst case scenario to happen like I did.
This is exactly why us parents need to be careful of what we read

Fantastic Lbet. I too feel like I'm waiting for the other foot to drop which is unhelpful. I'm going to put myself on a mental detox!

A small update (mainly for those who find this via google in a few years' time) - we had our telephone appointment with the Evelina. The doctor was great: he recommended we go for an endoscopy straight away. He told us he thought it was most likely to be a polyp based on the symptoms, especially as DS continues very well (just started school and still bursting with energy...wanted to run all the way home this afternoon after his sports club). DS had 6 weeks of almost no bleeding at all until a course of antibiotics set off some diarrhoea. He's then had some bleeding on and off this past week. Diarrhoea has resolved though.

Husband was not keen on endoscopy and I kind of agreed...we decided to go for a repeat of blood tests and calprotectin and have a follow up in two months. Doctor okayed this given DS is OK, and said they could always escalate things if we felt it was necessary. He thinks we will end up doing endoscopy anyway as even if there was a normal calprotectin on a retest we do need to find out where the blood is coming from - he felt a small anal fissure was probably not the cause. We shall see!

Oh that's a great outcome! I agree with you that an endo just to establish a polyp is present would seem like overkill. The one time we had bleeding because of a polyp, it was no big deal--he had an endoscopy and other testing already booked and it was an incidental finding..

Cheers, if his calprotectin is still high we will go for endoscopy because we want to check it's not IBD, it is of course still a possibility. Reassuring the Dr didn't think it was that (he said it would be very unlikely although possible). Dr also raised possibility of gastrointestinal hemangioma (DS had an infantile hemangioma before on his neck), again said it would be incredibly rare. I am crossing my fingers for normal calprotectin and it being a fissure (probably hoping against hope as Dr also thought that was unlikely!!)

Unfortunately his repeat Calprotectin came back as 7000 and he has some slightly raised blood inflammation markers as well as some protein in his blood. Oh and he is a touch iron deficient although not actually anaemic. Doctor said given he is still so well it's more likely to be a polyp still but makes IBD more if a possibility than it was. So we are getting an endoscopy booked in. My poor DS! Still bouncing around happily and full of energy - feels so cruel to put him through this.

Damn that's not what you wanted!

Regarding the endoscopy, I'm pretty sure that children have a general anaesthetic so they won't be aware of the procedure. I know it feels a lot for a little child to go through but you will be in a much better position once you know exactly what you're dealing with.

I'd urge caution with frequenting the Facebook groups because people rarely post on them to report the positive stuff. They give a skewed view of all the bad that goes with IBD.

I'm just a person leading a normal life. Occasionally an IBD flare can put a hold on normal activities until medication gets it under control but it really isn't something I live every day (apart from taking the medication of course). I've had long periods of remission where I've been completely healthy.

I also think that reading the Facebook groups can lead to people throwing the baby out with the bathwater as some people make such huge changes to their lifestyle and diet because they're under the impression this is what is necessary with IBD because this is what many of the prolific posters on groups do. I'm glad that Facebook groups didn't exist when I was diagnosed so I just got on with things and did what was necessary for me.

It certainly wasn't! Ha thanks for that did make me laugh. Tbh knowing DS he will probably enjoy the drama. When we went to St Thomas' for his blood tests he was very keen to explore it - sadly looks like we will back to fulfill his request!

Cheers, I am trying to stay off as it really is the worst case scenario on FB. His bleeding has reduced relative to a few months ago so goodness only knows what's going on. I am hoping for a polyp but wildly flip between being certain it's IBD and certain it's something else. The something else changes daily. We have noticed a reduction in blood after he started movicol - does that make it more or less likely to be a polyp???

Sorry to hear it is still so high

my son has UC and had his colonoscopy at Evalina - he was also well in himself doctor thought polyp but it was I wouid prepare for it to be IBD. The main thing is getting a diognosis asap before he starts to feel reallly poorly and start treatment to stop the inflammation asap.

my sons calprotectin was 2200 and had a foul smell. He has been really well for the last two years so it's not all bad if it is IBD xx

Thanks Remmy. They seem very on it as I've been impressed with the personal phone call from the consultant. I just want to know now really!

Once you know then you can figure out how to deal with it. We've had the worst possible outcome with my son's bowel and now all the surgery is over and treatment sorted, it's a lot easier to live with. The uncertainty of it all was the worst phase.

There are three of us in my family with high levels, me, I have coeliac disease and had very similar symptoms until I stopped eating gluten.
My cousins child who has hypermobility which also affects his gut and stomach - he bleeds like crazy and has ended up in A&E on a number of occasions and my nephew who is allergic to eggs - had hard stools and lots of blood.

I think the calprotectin being so high rules out allergies, I think you can get 400 or so with allergies but not 7000. I would be like to be wrong about this though! We did notice an association with Pizza but not any other bread!

Bleeding in isolation isn't a common feature of allergies/intolerances. You'd expect to see weightloss, hives, gut pain.

I have some excellent news. IT WAS A POLYP! a big one too (2.5cm - doesn't sound all that big tbh!)

Fantastic news, what a relief for you.

Thank you! Feel weirdly delighted. DS still recovering from GA and feels odd to be so elated while he's still a bit agitated. Poor sausage has been very brave.

Brilliant news op. Thanks for updating