Toddler ?IBD anyone with experience of this?

[NoRoomForALittleOne]

I noticed that DS2 (22 months) was not putting on weight well last year and seemed to be generally a bit delayed with his development. So after seeing the HV and GP, he was referred to the paediatrician at our local hospital. We saw the paediatrician just before Christmas and DS2 had blood, urine and stool tests. He went back last week for a follow up. His bloods weren't too bad but he is slightly anaemic (although iron was fine so presumably B6 or B12 deficient but these weren't checked) and he has raised faecal calprotectin at 197.

When we first saw the paediatrician he said that it would be highly unlikely that a child so young would have raised faecal calprotectin. Now he has decided that DS2 needs to see a paediatric gastroenterologist and will probably need cameras to find out where the inflammation is. The main concern seems to be Crohn's disease 😔 He's not even two yet and I'll admit that I'm scared on his behalf. I can't even imagine how he will manage to have bowel prep never mind getting such a life changing diagnosis.

Anyone have any experience of this?

[BarbarianMum]

I've got Crohns but I was diagnosed in my 40s. So sorry you are going through this. I also have coeliac disease which is another possibility for your son (and a damn sight easier than Crohns to manage). There will be other possibilities too, and a gastroenterologist is a good place to start.

Regarding the bowel prep a lot of small children are given this by naso- gastral tube in hospital and I wouldn't hesitate to request this if you think the alternative won't work (I'd love to do it this way tbh). If he has an endoscopy or colonoscopy he will be sedated so won't know anything about it.

Wishing you both well x

[NoRoomForALittleOne]

I think at that age, they get a GA rather than sedation. I've had colonoscopies and hated bowel prep. Not sure how he would react to an NG tube but I cannot imagine for a second that he would drink the disgusting stuff!

[Tedsterteddington]

Sorry to hear that you are so worried about your son. My son is 3.5 and has had all the symptoms of IBD since birth, his calprotectin level was just under 500 and Gastroenterologist was certain he must have IBD. He has had upper and lower endoscopies and a capsule endoscopy (under General Anaesthetic) which we are waiting for the results of now. My son is anaemic and to complicate things further he also has a periodic fever syndrome, which results in high fevers and inflammation all over his body very regularly. We still don't know for sure what is going on but young children definitely can have IBD I was very anxious about the endoscopies but honestly it was all fine and my son didn't remember a thing! We stayed in the night before for the bowel prep as he is so young. I would definitely recommend this if you can. Good luck 🍀

[NoRoomForALittleOne]

Thanks for your post, Teds, it's really helpful although I'm sorry that you are going through such a worrying time. I don't like the times of waiting for test results. I hope that you get some answers soon and that your son gets the treatment that he needs.