Hi there,
I’m looking for other parents of children with hirschsprung’s disease
Hello to you too. I have a three yr old with dx of SSHD at 19 months although she presented with signs at birth. So we dealt with the crying, no pooing using babylax daily and behavioral problems, vomiting,etc for 19 months. the worst is watching her feel the pain and being told it is all behavioral. But for you my gosh 9 months and has been in hospital how many times and for how many procedures?? I am so sorry and I send you all the strength in the world. Keep in touch with us. Are you also part of the Hirschsprungs Support Network or something like that? I can get you their website if you want. I am part of both of them. Take care it will get easier trust me and take care of that little one.
Sincerely, Kathy and Felicia 3 yrs old SSHD, on Miralax, not potty trained and not willing to be. Sister Hypotonic 4 months old, dev. delayed , hearing problems, epileptic, etc. Both very charming and cute girls.