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.
Desperate for answers after negative Hirschsprungs Di... - ERIC
Desperate for answers after negative Hirschsprungs Disease result today for my 4 year old boy.
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Kate1103
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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.
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
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