Terrified for toddler Anyone medical?

[Kanfuzed123]

Posting for traffic.

Posted a few days ago about pulling my toddler out of nursery due to faltering growth and illness. Well a week or so ago she had blood in her poop after some constipation, GP requested stool sample. We’ve just had the results and I’m panicking.

The calprotein was 650 (normal range is below 60)
And FIT was 27 and normal range is under 9.9

An urgent referral has been sent off and I’m spiralling and worried she has cancer, the practice nurse said the tests look ‘sinister’

Anyone been through this or has any knowledge that might be help me stop spiralling.

She’s had a blood test for celiac and it was negative

That is very frightening and I can see why you are on the edge of spiralling. However, the best thing you can do for your DD is remain very calm and keep her happy in herself.

I don't know what the most likely diagnosis is, but I do think the nurse coming out with "sinister" is quite unhelpful. Hopefully you will get the results back soon and then they can start on a treatment plan. That will be much better than fretting because you don't know.

In the meantime you can't do anything except put it out of your mind and reassure your DD with calm and cheerfulness and routines. Stay strong

High faecal calprotectin is an indicator of inflammatory bowel disease, with fits in much more with faltering growth.
I hope you are seen quickly to reassure you

Inflammatory bowel disease is more likely than a gastro cancer in a toddler. Please try not to worry too much, you are on the right path to getting help.

I’m so sorry you’re dealing with this. I read your other thread.

The nurse was very unprofessional saying that with no concrete information!

I haven’t been through a potential cancer scare with her but i have been through serious medical issues with my daughter including over 20 surgeries. I know how scary it is.
The best thing you can do for her is be strong and calm.

There is always someone here to listen

She’s only 2 years old. :(. She’s got no clue what’s happening.

I heard sinister and I went straight to cancer. She had a fbc in mid December and no raised inflammation markers. They’d be raised in the event on something like cancer right?

Would there be other signs of inflammatory bowel disease? She’s got perpetual dark circles which I’ve read can be allergy but that was dismissed by her paed as she doesn’t have other signs of one.

Would ibd explain why she gets hit hard by colds?

I’m sorry you’re going through this, it must be so worrying.
As other posters have said, IBD is a much more likely diagnosis than cancer in a toddler.
My DH had a high calprotectin, can’t remember the level, but it turned out to be absolutely nothing at all, not even IBD!
Hope you get some answers soon!

Do you remember how high @Cardio101? Hers was 650 and the upper normal is 60, how much it is above the upper normal is scaring me

I hope you can get some reassurance very soon, that really wasn’t helpful of the nurse to say that.

I’ve just had a quick Google and those two high levels are indicative of bowel diseases such as Crohn’s or ulcerative colitis. I know it’s so easy to think the worst though.

My small child had visible red blood in their poo after constipation.
Their FIT test was over 50 (it will be high if there is any visible blood).
It resolved on it's own and was down to small mechanical scratches in the rectum/anus (from hard poo).
It never reocurred and they are fit and well.
I understand this is by far the most common diagnosis for a small child, so try not to worry as long as things are getting checked over appropriately.

I wish your daughter a full and complete recovery. iBD or ulcerative colitis are far more likely, and can be mediated with medication and diet. It’s very hard to see your little one ill, especially when too young to fully explain how she hurts.

Hopefully it might have a less serious explanation. The nurse was unprofessional so dont go on what she said. She could be someone who over dramatizes things. Wait and see and try and stay positive. Whatever it is there will be treatment available xx

Gut infections can also cause raised faecal calprotectin and blood in stools - it’s a fairly non specific indicator of gut inflammation and I definitely wouldn’t be jumping to cancer as a likely diagnosis. Were any stool samples sent for microbiology culture?

Ah, Kanfuzed123, sending you a big hug.
I have a child with severe ulcerative colitis. May I say that the treatments for IBD are really very good now?
Knowing what you are dealing with really makes things better, the unknown is much scarier.
It is very rare for this to be cancer.
I am also a nurse and work in this field (don't want to out myself) but you can have those raised levels and not have a serious illness. My child's Calprotectin would be up in the thousands during a flare-up, to give context.
The nurse was seriously off to say 'sinister' when she has absolutely nothing to go on but those blood results. The main thing is to get the ball rolling and get a diagnosis or see what is causing this.
My child was 100% well, then suddenly wasn't. And became very ill very quickly. That's the way they go. Have had a few big hospital stays, but they bounce back every time, and fit and healthy in between, enjoy an active, sociable life-now a teen. They are immunocompromised but you'd never know! had covid and never skipped a beat.
Don't panic, don't beat yourself up. You are doing what needs to be done. Look after yourself, and your wee one. I'm sure all will be well.

She was constipated before the sample so that’s what we put the blood down to but sent it off to be safe. It’s the calprotein that’s scaring me

The nurse should never have said the word 'sinister' because she should know that most people will equate that word with cancer. She was an idiot to say it.

Whatever the problem is, it'll be treatable and manageable and she'll soon be under the most appropriate care. Keep telling yourself this over and over.

@Kanfuzed123

She was constipated before the sample so that’s what we put the blood down to but sent it off to be safe. It’s the calprotein that’s scaring me

Calprotectin can be inflammatory bowel disease, but equally can be coeliac (the blood test isn't enough), or food allergy, or a tummy bug.

They will do further tests to work out which of these things is going on (the less worrying things are by far the more common).

@JessBe

Gut infections can also cause raised faecal calprotectin and blood in stools - it’s a fairly non specific indicator of gut inflammation and I definitely wouldn’t be jumping to cancer as a likely diagnosis. Were any stool samples sent for microbiology culture?

I’m not sure, it was sent off for testing and we got the results of calprotein and fit not sure if anything else was tested, i don’t know this isn’t my area at all. So out of my depth

Ugh. No wonder you’re worried. My take on the word ‘sinister’ when medics use it is just generic for something that warrants investigation or is likely to be caused by disease. It doesn’t mean ‘cancer’ per se, although it could be used in that context. In a 2yo it’s not a very likely diagnosis, something else that causes bowel inflammation, from allergy to inflammatory bowel disease is more likely, and would also tie in with her growth problems. Ultimately this is good news because understanding the underlying issue will help her get better. Hope you get some answers soon.

I know you're terrified and feeling helpless , but there are things you can do to prepare your child, family and yourself. Try to focus on today, what's within your reach today.

You need to prepare her for hospital investigations. Buy her a nurse or Dr outfit, toy stethoscope; play hospitals, doctors and nurses with her, you, dolls and teddies, beds and covers etc. Find some toddler books about a stay in hospital. Talk about hospitals. Then it won't all seem quite so alien and strange when she's there. Buy or borrow some pretty light pyjamas for DD

If she stays in then I hope you'll be able to stay with her; so get yourself ready. Pack a bag. Hospitals are hot. You'll need plenty of light cool washable clothes , a set of toiletries, supplies of any medications you take. Wipes, moisturiser. Light shoes you can wear without socks.. Spare phone charger, ear buds, and something easy and mindless to distract yourself while she's asleep; book magazine puzzle etc for you. Notebook and pen; very important. Take notes during medical appts and discussions, as its very easy for stress to blank everything out. Write down all the questions you want to ask DR's so you don;t forget. And when you feel really alone, take a few minutes to write down your feelings in private.

Some light pyjamas for her; and hair clips or ribbons if she likes that sort of thing.

Rally your friends, neighbours, relatives, work colleagues. Do you have other children or pets needing care, walks, school pick ups etc? I suggest you pick one sensible calm relative /friend as " news reporter" who will whatsapp or email your hospital updates to all the rest. Make sure they have your preferred list of recipients. This saves you having to keep repeating stuff over and over to every concerned enquirer. Ask someone to manage your hospital laundry.
Accept all offers of help however tiny, like watering the houseplants and putting out your bins at home. This support will be your security blanket.

 You  WILL find strength in yourself   (and support from others) you didn't know you had, to help you through this.   I wish you all well and the best outcome. 

Think of some activities you can do together in hospital; crayons, paper, stories.

I had a google and it said under 500 could be an infection but above 500 is almost certainly an inflammatory disease

sicky
failure to thrive
stool issues

I'm thinking coeliacs.
mention that at next gp visit if they don't bring it up.

Agreed the nurse should not have used the word "sinister" - unhelpful on so many levels! Blood in stool could well be caused by constipation, and I don't know about specific levels but there are several things which can cause high calprotectin. I have IBD (diagnosed in my 20s) and as others have said there are loads of good treatment options these days, but hopefully it will turn out not to even be that. for you and hope you get some answers soon for your DD

She already loves to play doctor on her animals.

I have a newborn baby who’s breastfeeding so it will be DH who will have to stay with her if she stays over night, although I’m really hoping it doesn’t come to that.

I’ll definitely take your suggestions @2bazookas of writing things down in appointments and writing all questions down. DH gets overwhelmed and basically blacks out.

We’ve got no family or friends who’d be willing to help, most wouldn’t even care. Her grandparents never ask about her, same with aunts and uncles.

I can completely understand why you're worried given what the nurse said, but it does seem inappropriate for her to say that based only on those results. I have Ulcerative Colitis (which is inflammatory bowel disease along with Crohns) and my calprotectin has been in the thousands before when it was flaring up. It's now well controlled with medication and many people have long periods of remission with the right medication. Crohns and Colitis UK website is a good source of information. As others have said, high calprotectin can be for other reasons too, I'm in no way medical but I'd have thought it was extremely unlikely to be anything truly sinister in a child that young. I really hope you get answers soon.

@purplesequins

sicky failure to thrive stool issues

I'm thinking coeliacs.
mention that at next gp visit if they don't bring it up.

@purplesequins this most recent sick episode is definitely a bug but she was sicky as a baby well passed 1.

She had a blood test for coeliac and it was normal though? Would that not have shown it? I’m ignorant on these things, she doesn’t have any immediate or really noticeable reactions on eating wheat, gut or otherwise