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

Would Ibd mean your more susceptible to colds hitting you hard as you’re technically immune compromised?

The thing with the tests she’s had so far are that they’re highly sensitive but not highly specific, so nobody here can give you any more information than you already have. All anyone knows so far is that they’re raised and it might mean something, but equally, they might all settle down and it turn out to not be much of anything. It might be a testing few months while they get to the bottom of it, so try not to burn yourself out with worry and stress too soon.

Some good sensible ideas up thread about preparing her for hospital visits, etc.

Good luck to you both, I hope further investigation happens swiftly and that she feels like a shiny new penny very soon.

@Kanfuzed123

Would Ibd mean your more susceptible to colds hitting you hard as you’re technically immune compromised?

I'm not medical in the slightest but could ibd mean she's not absorbing nutrients properly and being malnourished would surely affect your immune system?

People with IBD are usually immunosuppressed because of medication that they take to suppress dysregulation of the immune system which is damaging healthy bowel, not because IBD in itself necessarily compromises immunity.

A never ending stream of coughs, colds and other viral illnesses is quite normal for a toddler.

Faecal calprotectin can be raised with viral gastroenteritis too. Inflammatory bowel disease also possible, but would expect her to have other symptoms likely blood in poo, diarrhoea?

I’m no expert but it’s unlikely to be cancer. You’ve been waiting over a week? I think you’d already be in and be messaging from the hospital. They don’t hang around with childhood cancer. The longer you wait the better right? It seems to me to be too long to be cancer.

@trickytimes

I’m no expert but it’s unlikely to be cancer. You’ve been waiting over a week? I think you’d already be in and be messaging from the hospital. They don’t hang around with childhood cancer. The longer you wait the better right? It seems to me to be too long to be cancer.

Sorry should have been more specific, she had the blood in her stool over a week ago but the results of the stool sample only came back today and an urgent referral has been sent off for her.

My baby, the thought of anything being wrong with her is crushing. That nurse just sent me spiralling

My baby, the thought of anything being wrong with her is crushing. That nurse just sent me spiralling.

Please try and put what she said out of your head. Hard as it is. She should never have said it.

when dc was investigated for coeliacs they told us that the blood test only gives some indication but that a biopsy is the only way to properly diagnose (disclaimer: more than 10 years ago)

OP I am no expert, but just wanted to say I'm hoping for the best for your little one

That nurse should not have used that word. When all is well take time to mention it to your GP she needs retraining.

I don't think you can infer anything from hospital wait times. I think actually in the circumstances you'd be justified in going back to your GP and asking if they can talk you through their thinking / the possibilities and how likely each one could be to help you understand and feel more in control. And take lots of notes while they talk. Hopefully they'll also be able to advise how long you're likely to wait for your appointment, so at least you know what to expect and can plan. I'd be tempted to mention that the nurse's use of the word "sinister" has made you very anxious so this can be gently fed back to her.

Hi, I'm not a paediatrician but I do work in healthcare. Faecal calprotectin levels are a useful screening tool for picking up if there's inflammation in a patient's GI tract, but they don't pinpoint exactly what the inflammation is caused by. There can be many different reasons why someone might have GI inflammation - an infection, inflammatory bowel disease, etc - and many of these can either resolve themselves (as is the case for a number of GI infections) or be managed with medication and diet (either short- or longer-term). When thinking of the list of differential diagnoses, GI cancer is waaaaay down the list, so try not to spend too much time thinking about that particular diagnosis.

It sounds like your GP is taking things seriously, which is good, as it means your daughter can have prompt access to the specialist assessments which can help identify what's caused her symptoms and what should be done next. Once the specialists have discussed the referral, they'll probably get in touch with you quite promptly with an appointment date - they won't want to leave a child in discomfort. They might also ask your GP to arrange some additional tests prior to the appointment.

I hope that your daughter feels better soon. If you feel it would help to have some additional support for you and your family, I've found that hospital chaplains can be a great source of information about how to get both emotional and practical support. You can probably get their contact details from the hospital's website, or by phoning the hospital switchboard.

Would there have been other signs of ibd? That was her first bout of constipation. She does have loose stool here and there but it’s ideally attributable to something ie iron supplements or a virus

My daughter had this and was diagnosed coeliac disease

Please try not to worry. My calprotectin was off the scale (>6000) but after colonoscopy it was found to be a proctitis. The Consultant said that it's the 'best' IBD to have and he was expecting it to be far worse.

Fecal calprotectin doesn't increase neatly with severity of disease.

Sounds alot like it could be coeliacs, which is not surly h a big issue push for endoscopy

@eleda542

My daughter had this and was diagnosed coeliac disease

@eleda542 did she have a negative blood test for it too?

Did she have other symptoms? Xx

It is possible to have coeliac disease and a negative blood test. I’d have thought that they’d want to do an endoscopy to rule it out or at least repeat the blood test.

Dd had coeliac disease and had calprotectin of over 600. Also failure to thrive and the dark circles under the eyes is typical of coeliac. Dd also had blood in her stools. I admit I know nothing about IBD and if these symptoms also fit that.

www.beyondceliac.org/research-news/can-you-trust-negative-blood-test/

Also if she hasn’t been eating enough gluten for six weeks prior to a blood test she will get a negative result.

Any news,OP?

@GreenFingeredNell15

Any news,OP?

Thanks for checking in!

No news, the doctors surgery decided the referral wasn’t urgent despite the lab who ran the tests saying it was. I despair.

We managed to get our insurer to cover the only paediatric Gastro in the area but the soonest appointment is this Wednesday. Fingers crossed all is smooth

Keeping you in my thoughts

I hope everything goes okay on Wednesday.

My son was a very pale and extremely thin as a small child with dark circles under eyes. We ended up paying for allergy testing and he was allergic to cows milk and wheat.

We’ve wondered if it was an allergy and she used to rub her eyes at the table all the time, and she still does now but the HV said no she just does it out of habit, wish we’d pushed harder.

She sore an ent for her glue ear the other day and he weighed and measured her and she’s back on the 9th centile, he disputed if the previous measurements were accurate and removed her faltering growth label as she’s still in her centile range, dropped a bit but she’s had 4 bouts of gastroenteritis in the last 5 months. The most recent one lasted a week, so she’s bound to have lost some weight x

@Kanfuzed123 have been thinking of you; how did you get on?