Desperate for answers after negative Hirschsprungs Disease result today for my 4 year old boy.

[Kate1103]

I wondered if anyone could offer me any advice please. My 4 yr old had a rectal biopsy done at bham children's on 5th Jan. It's come back negative for HD today. We are now being referred back to his ongoing paediatrician at Warwick hospital - we have an appt on 27th Jan. Joshua has been impacted most of his life I believe but confirmed via ultrasound and x-ray for atleast 1.5 years now. He was born with sepsis and didn't pass meconium within 48 hours. He is extremely small and thin ( under endocrinologist and dietician for this too but ruled out any growth hormone issues and dietary reasons ) with a hugely distended stomach. He is in pain most days and lactilose, movicol, sodium picosulfate are not moving the impaction. He has a bone age of a 1.5 year old and only weighs 30lbs and I believe this is all due to his body not absorbing nutrients for years due to this bowel or digestive issue and constipation.I was so convinced he had HD that I now feel so lost with what to do now. I have private healthcare and will be seeking private help if I'm not happy with the outcome on 27th but I just wondered if anyone else had anything similar before or could offer any other thoughts? Thanks so much. Photos below show Joshua with distended stomach- this is everyday and he has had this since birth.

[OlivesYou]

Have the doctors talked to you about a cecostomy tube? Was recommended for

My son although he is currently being managed with medication by mouth.

[Mitzie1]

My son was like this had test after test, he ended up having peristeen enemas everyday for about 6 months, was bad to do but it worked, hope this helps