Child with inflammatory bowel disease

[Kanfuzed123]

Does anyone have a child with ibd?

How old were they when diagnosed? What were there symptoms?

My daughter had a calproctin level of 650, nurse has said it implies something ‘sinister’ said she’d send an urgent referral. Dr surgery are just messing around with it and won’t send it urgently and said it could take weeks. We are freaked out to the max.

Her height and weight have fallen at last check, weight we assumed because she’d had norovirus 3 times in 4 months.
She’s quite fussy with food and has a small appetite, but I’ve attributed that to too much pressure at meals and some awful food experiences
She’s got dark circles
She was aneamic
We won’t fresh blood in a stool but she’d was so constipated it was like a golf ball. This has only happened once.

I was reading up on Crohn’s last night and it sounds horrible, liquid only diet for a while (which she won’t drink) or NG tube feeds.

I’m so worried for her.

Aside from the above she’s not had unexplained diarrhoea, it’s always been off the back of a virus.

I guess I’m just trying to reassure myself it’s not ibd xx

I don't have a child with IBD but I have Crohn's so didn't want to leave your post unanswered. Try not to worry, I know it's a really scary thought but if it is IBD they can treat it. Once they have diagnosed her it's upwards from there and onto a treatment plan. Treatment could be steroid tablets or something not necessarily any liquid diets.

I live a normal life most of the time, it's something you just learn to live with.

Could I ask you your symptoms please @Goldenphoenix? How old were you when you started to have them? Was there a particularly triggering event? Did you have elevated calproctin, if so what was it?

Do you think it could’ve been something I’ve done to give it to her? Or trigger it?

DS has Crohns, diagnosed age 10. Calprotectin of 650 is high and needs to be investigated with scopes, but DS was 3500 at one point, so it's a trigger for investigation rather than a sign of anything terrible. Nurse was not helpful there.

Liquid diet is tricky. But really helps. DS did his in lockdown so that was easier as no school issues. And there is loads of helpful modern medicine. DS has a monthly biologic infusion and is doing well now.

I also didn't want to leave your post unanswered but don't have a child with IBD (I have it, but asymtomatic now). IBD is an autoimmune disease with a complex etiology (we don't know what triggers it), but I wanted to reassure you it is very, very unlikely to be anything you have done. I began with symptoms at 16, didn't get them checked out. They then spontaneously subsided at 18. Then they came back at 20, but were well controlled by medication. I led a very active life, travelling and studying. My symptoms went away 10 years ago (when I was pregnant with DC2) and (touch wood) have never come back. It's a funny illness but there are lots of treatments once the right investigations have been done. I recommend you push, push, push for a specialist peadiatric gastoenterologist referral. It is urgent and your GP needs to act right away. Best of luck to you both xx

My symptoms started about 14. I had severe, urgent diarrhea as the most prevalent symptom. Wasn't until my early twenties it progressed after a stressful event to ulcers in my mouth, down throat, diarrhea worsening, severe weight loss, deficiencies etc. X

It's definitely nothing you have done! Nobody knows why some people develop symptoms. My childhood was happy and calm, great diet etc and I got it. If she does have IBD it isn't your fault, just bad luck x

What happened to your other thread on this?

@ClaudiusTheGod

What happened to your other thread on this?

Nothing really, probably should update and say that despite telling me it was a sign of something sinister and the lab who did the test recommending urgent referral the practice nurse disagreed and just put it through normally for dictation. I questioned this and they said it’s not even the surgery that decides if something is urgent it’s the consultant who receives the referral and the lab recommendation doesn’t mean anything. I don’t know, it’s very computer says no and I’m getting a different answer from everyone. It’s made dh and I incredibly stressed.

I was just hoping to hear from people who’s children have IBD what the symptoms actually were because it’s all very confusing.

She’s only 2 bless her and I don’t know if I’ve missed anything, all the signs and symptoms are vague especially because a toddler can’t communicate how they feel specifically

@turkeyboots

DS has Crohns, diagnosed age 10. Calprotectin of 650 is high and needs to be investigated with scopes, but DS was 3500 at one point, so it's a trigger for investigation rather than a sign of anything terrible. Nurse was not helpful there.

Liquid diet is tricky. But really helps. DS did his in lockdown so that was easier as no school issues. And there is loads of helpful modern medicine. DS has a monthly biologic infusion and is doing well now.

@turkeyboots did he have signs and symptoms before then?

She has some symptoms from what I’ve read online but then they are quite generic except the diarrhoea with blood which she’s not had

My DS had almost no symptoms. No pain, no blood in poo. But he did have fistulas which triggered the referral.

His Gastroenterology team were convinced his calprotectin results were a result of noro infection, which it possible. But the scope proved otherwise.

Were they visible to the eye @turkeyboots?

Oh yes, very visible. But they were the only sign.
He's now on his consultants "special list" of kids who don't complain but are hiding symptoms.

@turkeyboots

Oh yes, very visible. But they were the only sign. He's now on his consultants "special list" of kids who don't complain but are hiding symptoms.

Oh bless him!

My daughter doesn’t have them either, she’s still in nappies so we’d definitely notice.

Hopefully it's just the noro virus. It can cause temporary colitis and high calprotectin numbers. But worth pushing for that referral and scopes to see.

@turkeyboots

Hopefully it's just the noro virus. It can cause temporary colitis and high calprotectin numbers. But worth pushing for that referral and scopes to see.

She’d not had it around the time we sent off the sample, in fact it had been about 2 months before. She did however have a bout of constipation, and an upper respiratory tract infection and she’d just started on paediasure compact, but no norovirus.

We’re getting the referral it’s just going to take an age xx

Do you have health insurance or can you afford to go private. If you can get a recommendation for a good gastro paediatric expert and can afford £200 for the initial consultation I’d probably do that.

@Kanfuzed123

My son was diognosed with IBD around this this time last year he had bloody loose stools.

As soon as his fecal calprotectin came back high I pretty much knew was the diognosis. was.

They did get him to do a few stool tests and they shouid for your daughter.

Please do not read too much online as that is what I did and I nearly had a nervous breakdown as wuth any disease symptoms and severity are different for all.

Could also be a gluten allergy!

X

Just wanted to provide a small update, we paid private to see the only paed gastroenterologist in the area and in what can only be described as the most expensive 20 mins of my life, he dismissed everything. He said calprotectin isn’t a reliable test in children under 4 due to the fact that’s it’s just naturally higher In young children anyway, he looked at his bloods and did a physical exam and basically said she’s fine and the tests were unnecessary

Sounds odd to me - stool sample is raised significantly, blood work cannot show IBDs - im surprised he didn't suggest another stool sample given the money you paid!

I'd keep to the nhs appointments when they come to be double sure.

Good luck!

@Remmy123

Sounds odd to me - stool sample is raised significantly, blood work cannot show IBDs - im surprised he didn't suggest another stool sample given the money you paid!

I'd keep to the nhs appointments when they come to be double sure.

Good luck!

Guess it’s because we’d have to pay for it? He said the calprotectin test is this ‘cool’ new test but it’s not clinically appropriate in under 4s.

He said ibd didn’t match her symptoms or her growth pattern, he did a physical exam too.

Anecdotally I had a similar experience with ca125, I was put on the 2 week cancer pathway for raised ca125 I saw 2 gynae one private and one nhs both said the same this Is a test for an inflammation marker but it’s not clinically appropriate in young women

He actually said it's a 'cool' new test? It's not new - really strange.

Weight loss
Anemia
Dark circles
High fecal callp are symptoms of IBD but it can also be a symptom of something else totally unrelated like food intolerance

I wouid continue down the nhs route as you are already in the system just for own piece of mind if nothing else

It was a direct quote yup lol.

She’s not actually lost weight, just not gained as much as she needed to so fallen in terms of her curve. She was reweighed and plotted slightly under the 9th centile and she’s had 4 bouts of norovirus/ gastroenteritis so he thought it was most likely attributable to that.
Anemia- he noted it was mild and not significant
Dark circles he said it wasn’t pathological

We asked about allergies as that’s what our gut was telling us and he said then tend to present with diarrhoea and pain neither of which she consistently has. He said they tend to run in families too which I’m not too sure about.

We’ll definitely go to the nhs appointment, not heard a peep about it yet though