Daily Hirschsprung’s Story

This is  a blog where you can view recent info about HD.

2 Responses

  1. Kristen Ciamaga February 10, 2014 at 4:14 pm | | Reply

    Hello, I am so happy that I found this site, there is no better information out there on any medical website of one coming from Moms and Dads who see their little one deal with this disease first hand. My little guy Jacob who is not 4.5 years old was diagnosed at 2 weeks with Hirschsprungs disease, he spent 2 weeks in the NICU and was sent home with daily irrigations he never once had a poop on his own, we had 2 trips back to the ER with a admittance for a 3 day stat due to colitis. He did not have to have a ostomy, at 3 months they did his pull through surgery. He has yet to have any problems since, no infections to date. Of course when he gets sick or something aggregates his stomach it is far worse for him as you all know than the normal child. My question that I am struggling with is this and I feel no one understands unless you are going through it. He still at 4.5 has accidents, he for the most part does great and will even yell I have to go poop so he can feel it come, however there are times where he has smears in his underwear or I will pick him up from half day preschool and he has a little in his underwear, I will ask him did you feel that coming out? I do not know if it is him being 4.5 years old and being preoccupied with playing or if he is still having “feeling” issues. I know our surgeon who we but Loved it is no long at our children’s hospital said he could still be developing up to the age 6. I do not know what I am going to do about all day kindergarten if he is ready for an all-day school day still having these issues. I would love to hear if anyone this far down the line is still having issues with accidents. Thank you all and I am thankful to no be in this alone!

  2. Concerned mom December 22, 2014 at 9:52 pm | | Reply

    My daughter is 4 She has the same issue. Accidents everyday. I don’t know what to do. I don’t think she feels it but she hides it because she is aware and ashamed.

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