My daughter was born 10/23/04 with 50cm of working bowel because of Hirschspung’s. I just want to talk to anyone who has the same condition. I feel like she is the only kid in the U.S. with this disease. I don’t feel the Dr’s are doing anything to improve her quality of life, it seems they are just keeping her alive. They have no answers and I’m not sure I’m asking the right questions.
Chris
My son has short segment so we are in totally different situations but I can sympathize.
One of the things I have learned through all of this is that doctors don’t have all the answers. I’ve researched and researched on my own and I finally found a doctor that seems to understand our goals and wants to help. Don’t be afraid to get a second opinion- it seems that there are always other options so don’t settle.
Jo - Mom of Chase
Muddle, Chloe is on tpn 18hrs a day, also she gets g-tube feeds at night. Right now Chloe is the hospital. They took her gallbaldder out and took a Liver Biopsy. We hope to come home before the weekend.
KJ, Yes 2nd opinions are a must. We are going to try to get to Boston Chrildrens soon. We know of a child that is getting treatment there.
Thanks for replying,
Chris
Hello,
I just wanted to let you know that I found a group on yahoo groups for hd… and I LOVE IT!!! It is alot bigger than the group here and has more moms that have been dealing with hd for many many years and sometimes it is nice to know that you are not alone in this hand we were all dealt… Hope things get better for you all soon 
Heather