20month old with severe constipation since birth and no positive response to laxatives

[HelloHello246]

i’m at a loss at how to help my little girl - she’s been through so much since day 1 yet nobody seems to really understand what’s going on! She opens her bowels daily but we rotate between solid large poos, very watery to mushy consistency and the MUCUS in there is significant, with every bowel opening - all of this within the same day. She has a very distended stomach every day with belly button popping out, barely sleeps, is always very grumpy and it’s just heartbreaking to see her suffer like this. Lots of gas. An xray revealed impaction and severe constipation a few months back and she’s been on high doses of senna, picosulfate and laxido (had to switch from lactulose) with no effect. Any positive stories? Or similar? We are awaiting gastro/colonoscopy + biopsies of bowels and oesophagus. It’s been almost 2 years of medical tests and it’s all very traumatic, especially for my awesome little girl.

[Petitou]

Hello, sorry to hear you're going through this. Just wondered if you have tried a dairy and wheat/ gluten free diet. Some children may not be clinically allergic (so would not show in tests) to these products but be intolerant and have symptoms like this. It can take a month or more to notice difference after eliminating these products from the diet. I hope things improve for your daughter. All the best

[HelloHello246 in reply to Petitou]

Thank you so much for your reply. We struggle with CMPA so she has not had any dairy for a long time. She was tested for coeliac and others but nothing came back from that so we have continued with gluten (although I do wonder sometimes whether it is a culprit). We have not been advised to eliminate this yet but this may change after the scope and biopsy. She also suffers from severe GORD, dysphagia and aspiration, mucus in her airways, and other… she had her adenoids taken out a few months ago. We are awaiting tests for Hirschsprung and also allergy-type reactions localised in the oesophagus. I can’t stand seeing her suffer like this anymore - I hope we get some answers soon…

[Petitou in reply to HelloHello246]

I hope you get some answers and support soon too 🙏 Definitely reconsider gluten if all other tests still coming back negative. Wishing you all the best.