My four year old son had just been diagnosed with ultra short segment hirschsprung and rectal achlasia after 4 years of struggle. He has had problems since birth with rabbit pellet stools, no meconium, and severe reflux that required surgeries. We had a biopsy on 11/10 that said he did have the ganglion nerves. they did botox injections and they were unsuccesful. He had a barium enema, and then they gave us this diagnosis.
I would like to get any insight on this as there isn’t much online about this type of hirschsprung. They are referring us to Cincinnati Children’s Hospital as they did not have any experience with this. He is being admitted to Duke for 3 days to have his bowels washed out as he is blocked form the top. He will then be referred to Cincinatti. Any advice or thoughts about Cincinatti as well as this disorder. thank you