Hirschsprungs sucks
In 2012 our first born was born and diagnosed day 3 with Hirschsprungs Disease. Pull through at day 10. At home he was never settled and clearly in pain and distended. Didn't sleep or eat. Battled to get taken seriously and finally diagnosed 3 months with colonic stenosis. Colostomy, and second pull through at 6 months. Had half large intestine removed in total. Late diagnosis led to failure to thrive and overnight feeding pump.
He is now 7 and doing great academically. Still skinny. He is a terrible eater, extremely picky and likes all the wrong foods. Steals lollies and eats in secret. Still has accidents and distension. Hides it from us and ignores accidents rather than changing his underwear. Tried everything and it drives us nuts, his behavior around the issues is very frustrating as he is potentially having an ACE procedure. So we are desperate for him to do his best to potentially avoid this operation but he doesn't seem to care, or understand. We also worry about him socially as to date his friends don't seemed to have noticed the smell but that won't last long.
Would love to hear from anyone who has gone through this. Very unsure about the ACE procedure. And tired of worrying, it's been a long 7 years, I would love to hear if it gets easier.
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