Hello! After 4 long years of having my daughter (Sophia) misdiaognosised and the misery of having to manually clean her out once a week after nothing else worked (enemas, meds, suppositories, etc)…constantly paying attention to temperature change in the case of infections she was properly diaognoised with Hirschsprungs’s disease and with in the last month has had several procedures which included her main surgeries, the endorectal pull-through and and revision of the same surgery done the very next day. We have been in the hospital for most of the month because she is running an unexplained low grade fever (up to 101 each day) since the surgery and she can not empty her bowels alone with out being so medicated that she is liquid…this is becoming disheartening! I just found this site and thought that I would take a look aroud. Have a great day! -Sara
My youngest son was born with hirschprungs disease and I don’t really know a whole lot about it. I know what it is and how it is treated. But what I don’t know is how this will affect his future and could my future kids end up with it too?
my 7 month old has it and i want to know more
hello, i have a son who was diegnost wit hirschprungs since birth he is gonna be 7,he has had serveral surgerys and still has not gotten fix up i’ve been through a lot i haven work since, i just don’t know what to do, i feel like it’s a never ending story that i have no understanding too,im feeiing sick all da time but it the stress. so i would like 2 connect with any 1 who has been or is going through the same experience,any 1 who knows some thing please!!!
I have a 11 year old daughter who was born with Hirschsprungs Disease and has two perm colostomies. She got her first one at 3 weeks old and her perm one at 4years old.
My son was diagnosed with Hirschsprung’s Disease. We found out during the surgery that it was total.
Waiting to see if my 6 month old son has Hirschprung’s. I would like to hear other stories to see if our situation is similar.
My name is Debra & I have a 4 yr old son with Hirschsprungs. He had pull through surgery at 3 mnths. I have occasional questions & would like some advice/info from others dealing w/this disease.
Hi, I have a 4 1/2 yr old son with HD. He had a pull through at 3 mnths. We still have not been able to get him potty trained-dont want to push him. I would like to connect with other parents dealing with this disease.
Well first of all my daugther Samantha has the diease. She is 2 an a half years old. We have been through alot. It’s not easy. I want to learn alot more, because my other child that is 4 could always get it in her adult life. That’s what i was told. I just want to know if that is true and to help understand the diease better.
My daughter, who underwent pull-through surgery at 6 months, turns 5 this june and has continued to have problems controlling her poops–lots of accidents; it seems there is a mental aspect to this as well, for despite our efforts to reward her for her efforts, she does not seem too motivated to make it happen. I would love to talk to other families with similar experience for advice, since kindergarten is right around the corner. Thanks for any help.
Helen
My son was born with Hirschsprung’s.
My son is 4yrs old and had short segment hirschsprungs. He is struggling with being toilet trained for his bowels. He has good sphinter control and his surgeon has ruled out a physiologic reason for this ‘staining’.
Does anyone have behavioral tips for training him?
I am interested in this condition because my 6 year old son has it. I want to connect with parents of children who have children of similar age experiencing similar issues.
My daughter possibly has this disease and my sister had it as a baby. My daughter is 8 now and I am curious in symptoms and what other parents have gone through, especially if their child was older when diagnosed. I am trying to educate myself better so I know what to expect and to be prepared in case.
MY SON DUKE WAS DIAGNOSED WITH HD AS A BABY AND HAD HIS PULL THROUGH AT 4 MONTHS OLD. WE HAD TO WAIT SO LONG BECAUSE HE WAS A PREEMIE. HE WAS A TWIN, BUT THE WEEK AFTER HIS PULL THROUGH HIS TWIN SISTER DIED OF SIDS. ALTHOUGH HE IS ONE OF THE LESS EXTREMES, WE STILL FACE THE WOES OF HD. I ALSO LIKE TO KNOW WHAT I MAY HAVE TO LOOK FORWARD TO. HE’LL E 2 IN JUNE AND THIS IS USUALLY THE AGE I’D POTTY TRAIN HIM- BUT I DONT SEE THAT FOR A WHILE! I’D LIKE TO MEET PEOPLE LIKE MYSELF AND THOSE WHO ARE CURRENTLY POTTY TRAINING THEIR HD KIDS.
My third born has HD and has been very unlucky to have had two colosytomys and a failed pull through. I would like to speak with people who have knowledge of this complex disease.
Hi my name is Candy and I have a 13 year old son that has Hirschsprungs disease. He has had 26 surgerys dealing with this his disease and is currently ostomy free and is on g-tube feed 12 hours a day
My son has Hirschsprungs disease and its nice to keep in touch with other families facing the same issues.
Both of my children have Hirschsprungs Disease as well as Intestinal Neuronal Dysplasia. I’ve been in contact with many families since Tyler, our oldest, was born in 1996. I look forward to meeting more and hopefully encouraging others with our story!