Patient Comments: Hirschsprung's Disease - Symptoms

At what age did your infant or child develop symptoms of Hirschsprung's disease? Please discuss your experience.

Comment from: 13-18 Male (Caregiver) Published: February 14

My son was diagnosed with Hirschsprung"s disease at 7 days. He was airlifted and had emergency surgery. He had an ileostomy for 10 months and then the pull through. I was told originally he would be very small, sickly and not be able to go to regular school or participate in sports. Today, I am so happy to report he is 14 years old, 6ft 1 and 160 pounds. He takes no prescription medications. He takes a probiotic vitamin daily and 4 salt tablets a day to stay hydrated. He starts on baseball, football and basketball teams.

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Comment from: Grams, 19-24 Female (Caregiver) Published: February 07

My 21 year old grandson was born with Hirschsprung's. He had a pull through done at the age of 10. Today he is in pain, with cramps that he says hurts all over. He stomach is not swollen. I hear the rumblings in stomach. This same situation happened about 4 months ago. He does not have a fever, but says he feels like he is burning up. I have given him a Gas-X, potassium tablet and 2 Advils.

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Comment from: Steffarooh, 25-34 Female (Caregiver) Published: January 16

My son is almost 19 months old. He has struggled with constipation since birth. Each pediatrician has said the same thing - more fiber, stool softeners, pediatric enemas. We have switched pediatricians twice and they all say the same thing. My son ended up in the emergency room (2nd time in a year) and the emergency room pediatrician thinks he has Hirschsprung's. Have any of you heard of a child being diagnosed at 18months with this? I must say my son is very underweight. He weighs almost 17lbs. He was fully breast fed for 16 months so the pediatrician always thought that is why he's so small. We have a gastroenterologist appointment next month. I'm worried they've caught this too late.

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Comment from: Worriedmommy, 7-12 Female (Caregiver) Published: March 20

My son is 8 years old. My sister is in nursing school and is studying Hirschsprung"s disease (HD). I didn"t know that this may be what was wrong with my son until she told me to google it. My son has had problems from day one. It is now so bad he does not go without and enema. He has gone 2 weeks without going! His doctor tells me to give him an enema since Miralax does not do anything; we also tried laxatives with no result! I know this is not normal, I feel like a bad mother for not knowing something was wrong. I felt deep down something was but his doctor tried to tell me she thought he was holding it in due to him remembering it hurting when he went. Due to our stupid insurance I have not been able to change doctors. I caught her out of town yesterday, called a specialist and got them to call the office and request a referral. We are finally going to see someone that hopefully can help us. I am not sure this is HD. But from what I have read it sure sounds like it. His poor little belly is swollen and sticks out so bad he never eats much and will be 9 in July and is still wearing a size 6 in clothes.

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Comment from: 13-18 Male (Caregiver) Published: January 30

My son was born with Hirschsprung's and he was also diagnosed with Down syndrome. We did not know about Hirschsprung's until he was 17 and no one knew what a painful thing it was to live with. He could not express the way he was feeling. He had blood transfusion, around 5 colon exams and hospitalized. It took a pediatrician gastroenterologist to tell us what was going on. He was constipated all his life.

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Comment from: bublee, 0-2 Male (Caregiver) Published: July 18

Gradual distension of abdomen. no stool without suppository/draining catheter. these signs symptoms worsen with passage of time.

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Hirschsprung's Disease - Personal Experience Question: Was your child or relative born with Hirschsprung's disease? Please share your experience.
Hirschsprung's Disease - Surgery Question: Did your child have surgery to treat Hirschsprung's disease? Please share your experience.

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