My daughter 3 yrs old had pull thru after diagnosis at 19 months. Passed little meconium, sparked temp and10 days in NICU. No results just told that she had a bad temperment and that is why she cried so much. Misdiagnosed her reflux and HD. At 3 weeks had stop breathing spells, always cried never slept, rounded but not hardened stomach so no one listened. Didn’t poop on her own without baby lax suppositories since left hospital for 19 months. GI said ok to use babylax that long. Pediatrician wouldn’t help us as didn’t agree with GI’s stance on use of suppositories. Saw GI since 3 months, I asked if it could be HD and he refused to do tests. And here we are after ER visit from her pounding her head on ground in pain and the on call GI found the HD. She is still not potty trained and refuses to do so now as we just had another baby with more medical problems. Depression set in with myself and my spouse, business fell behind and we are now filing bankruptcy and might lose home. Children doing better but not out of the woods. Just had bout of entercolitis and newborn has seizures and developmental delays. We have alot on our hands right now. Kathy, Felicia SSHD 3 yrs. Sister Mariah 4 months Hypotonic, epileptic, gross motor delays, feeding issues. Just interested in other people’s opinions and learning new things and research findings.
My daughter 3 yrs old had pull thru after diagnosis at 19 months. Passed little meconium, sparked temp and10 days in NICU. No results just told that she had a bad temperment and that is why she cried so much. Misdiagnosed her reflux and HD. At 3 weeks had stop breathing spells, always cried never slept, rounded but not hardened stomach so no one listened. Didn’t poop on her own without baby lax suppositories since left hospital for 19 months. GI said ok to use babylax that long. Pediatrician wouldn’t help us as didn’t agree with GI’s stance on use of suppositories. Saw GI since 3 months, I asked if it could be HD and he refused to do tests. And here we are after ER visit from her pounding her head on ground in pain and the on call GI found the HD. She is still not potty trained and refuses to do so now as we just had another baby with more medical problems. Depression set in with myself and my spouse, business fell behind and we are now filing bankruptcy and might lose home. Children doing better but not out of the woods. Just had bout of entercolitis and newborn has seizures and developmental delays. We have alot on our hands right now. Kathy, Felicia SSHD 3 yrs. Sister Mariah 4 months Hypotonic, epileptic, gross motor delays, feeding issues. Just interested in other people’s opinions and learning new things and research findings.
My son, 9 years old, is going through testing on Friday for a byopsy and another test involving a balloon for diagnosis of this disease. Just wanted to research what we are looking at.
Mom to Dakota who is going to be 5 and is autistic, mom to Matty who is going to be 2 and has SSHD
My son, Zachary, is 10 1/2 months old. At 15 days old he had a pull-thru surgery for short segment Hirschsprungs. We’ve been lucky because Zachary is and has always been a very healthy little guy. He recovered and is carrying on with things like a typical kid his age. I’ve joined this group to gather HD info, but also to provide support to other families dealing with HD.
I am the mom of a 13 month old SSHD boy.
i have a 9 month old son with hirschsprung’s disease
Mom to James William 3 years old. Was diagnosed with Hirschsprung’s Disease at 4 weeks and had pull thru at 8 weeks. Children’s Hospital in Dallas, Texas. Will has had zero physical problems up to now, but we are struggling a bit on the potty training issue.
i am looking for more info on this condition being that we think my daughter may have this problem. i want to talk to anyone that may have any good insight.
I was born with SHD. My wife is expecting our first child and I would like to know as much as possible about this desease in case my child gets born with it.
My son, Elijah, just turned two and has Hirshsprungs Disease. He was diagnosed and had a colostomy for 6 months. He had his pull thru procedure less than one month ago and is doing fantastic. This has been the most stressful and scariest time of my life. But I want to let everyone out there know there is hope. There are so many things that go wrong in the health care system, but they have also come a long way. I stayed with a local surgeon at the Children’s Hospital at HealthPark in Fort Myers, FL. I just had a gut feeling about the surgeon and so far so good! My prayers go out to everyone dealing with this disease!
My youngest son has a GI motility disorder. We have struggled getting a diagnosis for him since he was 7 months old. He is now 5 years old. We have had to educate ourselves on the whole and sites like this have made knowing we arent on our own a big help.
I am interested in this condition because my son had HD. He had his colostomy when he was 17 days old. At six months, he had six inches of his large intestines cut off. At exactly 11 months, his doctors removed his colostomy and since then he moved through his anus. He is now turning four this July. His weight is ok despite his rampant bouts with diarrhea and constipation.
I live in the hinterlands of the Cordilleras of the Philippines and I do not have any source of information and help regarding my sons condition (his pedia is also not very familiar with the disease)
except e groups like this andthe internet.
I am a grandmother of a child that has Hirschsprungs Disease. My daughter is in need of information on that subject. I am looking for that to send to her.
Family history of it and 2 yr old son has it.
I have a 5 year old who was diagnosed with Down syndrome and Hirshsprung’s Disease. I need help in potty training asap.
Son, Zander, SSHD, pull-thru at 14 days old – doing incredibly well now with nutritional product
Daughter, Naomi, 100% healthy
Another child due in December!
My 2 year old daughter has Hirschsprung’s disease. She has already had her pull through surgery. However, her recovery has not been normal based on the amount of colon that was removed. I am looking for anyone who has been through this and can offer support and/or answer some of my questions.
Our son Zach had pull through surgery at 3 months old. It was 6 hours long
and they removed the transverse and descending portions of his colon. He is
2 now and has very watery bowel movements. If we are lucky it is sometimes
about the consistancy of apple sauce. We are getting ready to make an
appointment with a GI to see if there is something we can do as far as his
diet to help him out.
My 2 year old daughter has Hirschsprung’s disease. She has already had her pull through surgery. However, her recovery has not been normal based on the amount of colon that was removed. I am looking for anyone who has been through this and can offer support and/or answer some of my questions.