http://www.mdjunction.com/forums/hirschsprung-disease-discussions/feed http://www.mdjunction.com/forums/hirschsprung-disease-discussions/feed en-us Copyright (C) MDJunction.com. All rights reserved. Sun, 19 May 2013 05:05:58 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/introductions-personal-stories/10666229-good-questions-to-ask-the-surgeonlength-matters-#10666229 Hi, I'm The Grandma. My newborn grandson was just diagnosed with HD. We'll meet with the surgeon tomorrow to discuss his upcoming surgery. As I read through articles and forums on HD, I find that people rarely describe how much of the colon was removed, making it difficult to compare to what our situation will be. Our little one only needs a few centimeters of his colon removed. I am wondering if this means he will have less of a risk of complications often found in situations where grea... Tue, 07 May 2013 08:15:07 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/2367624-constipation-after-hd-surgery-/limitstart/10#10643246 My son had pull trough when he was 10 days old. Next month he will be 4 yrs old. He had all possible issues: constipations, diarrhea, gas problems (couldn't pass the gas). Miralax helps us the most. I tried Miralax on the food and look what I found. If you put it to let say oatmeal or baby cereal it will make food watery. This is why we always put Miralax to the drinks, but this way it is easy to see what it does to the child after he consumes it. Poop is always soft. Always. My sons st... Thu, 25 Apr 2013 23:31:48 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/10617195-new-member-#10617195 Hi all, I'm a teenage male who was born with Hirschprungs. I was treated at Alder Hey in Liverpool, UK. I've had a pull-through operation and colostomy bags. But none of them have resolved my condition in the long run , so I was told last year that I will be using Phosphate Enemas.. basically for the rest of my life, now I know I have it better than some kids with HD out there, but I have trouble getting over the idea of using enemas so I was wandering if anyone out there may have any tips... Sat, 13 Apr 2013 17:37:21 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/introductions-personal-stories/884555-i-was-born-with-hirschsprungs-disease#10496253 hey:) I was born with HD aswell, this is my first time on this site, for a lot of years i was intrigued by the idea of talking to someone who deals with issues much like my own,it's always nice to be reminded your not alone, especially with having something not quite so common. :) I am 20 yrs old and was diagnosed at two weeks with HD, i had an ostomy as an infant but i don't have any memories of having it, and i under went the pull thru surgery, i then after was diagnosed with some other dig... Tue, 19 Feb 2013 18:38:27 -0800 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/229005-hirschsprungs-associated-with-hearing#10294023 Hell I am 46 years old and had hd as a baby so ill offer a little input. I have not ever heard of hd effecting the hearing but then someone living with this disease usually have malnutrition or dehydration problems wich can affect us in diffrent ways.... Fri, 30 Nov 2012 15:55:50 -0800 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/10236506-update-surgery-or-not-surgery#10236506 Hi there, I thought it was time I updated you all on where we are at with my son's HD. I have posted a few stories on here so if anyone has read my son's story he was the one who was diagnosed at just before he was 8 years old. He is 9½ years old now and is still under the consultant - and is doing fabulous (no surgery yet) - when we went to see his consultant back in July he was shocked to hear that my son was able to open his bowels every single day with just a small dose of Movicol daily... Tue, 06 Nov 2012 08:35:15 -0800 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/introductions-personal-stories/10052914-daughter-with-hd-has-no-appetite#10052914 HELLO EVERYONE I AM SO EXCITED THAT I FOUND THIS GROUP!! MY DAUGHTER, ASPEN WAS DIAGNOSED WITH HD AT 6 DAYS OLD SHE IS NOW 16 MONTHS OLD. SHE IS 18 POUNDS AND HAS A COLOSTOMY, HER DR. WANTS TO WAIT TO DO THE PULL-THRU UNTIL SHE WEIGHS OVER 25 POUNDS, WHICH HE BELIEVES WE WILL HAVE A BETTER OUTCOME IF SHE IS BIGGER. SHE NEVER EATS MORE THAN A COUPLE BITES OF FOOD IN A MEAL AND WON'T DRINK MORE THAN 3-6 OZ AT A TIME EVEN THOUGH SHE HAS BEEN TAKING PERIACTIN A MEDICINE TO HELP INCREASE HER AP... Fri, 31 Aug 2012 08:13:54 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/3647182-dietsugar/limitstart/10#10038534 Hi there, I have not taken him yet but I plan to schedule this fall. I will let you know... Sat, 25 Aug 2012 19:44:31 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/3717680-3-12-year-old-about-to-have-the-second-test#3989417 Momwithworry, How are you doing? How is your little one? We have been to see Ethan's consultant and he is now on the waiting list for his pull through procedure - unsure as to when it will be or how long the waiting list is. We are all very nervous but I do believe it is the right path for us to go down - even though he is still doing really really well in opening his bowels every day and going to the toilet without any other assistance other than his 2 satchets of movicol. We really jus... Wed, 08 Aug 2012 01:55:56 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/introductions-personal-stories/3888758-problems-with-colostomy#3932826 when i had a colostomy (babyhood) the bag bursted. in the middle of church. on the new carpets. (it was cleaned) Anyways, glad your kid's doing better!... Thu, 19 Jul 2012 17:30:01 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/introductions-personal-stories/589625-son-has-hirschsprungs-he-is-eight-years-old#3932805 Hello! I am a good bit older than him, but wow. Is he doing okay? My pullthrough damadged 99% of my bowel nerves. I didn't find out until I was 8.... Thu, 19 Jul 2012 17:21:52 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/3932800-i-am-a-child-with-hirschsprungs#3932800 If you clicked this, I would like to say thanks! My name is Hershey12. I am a 7th grader with hirschsprungs. I was treated with a colostomy when I was an infant. At 8 years old, I was put on a prescription. Daily. Rectal. Enemas. 400 mlliliters of saline (salt and water) and 20 milliliters. of glycerin. A year later I chose to have an appendicostomy. I am hoping there is at least one kid out there who will see this and reply. Thank you for reading... Thu, 19 Jul 2012 17:18:31 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/3891423-hiccups-#3893956 Now that you mention the hiccups I remember that while I was pregnant my son had hiccups all of the time it seemed. And he had his first surgery at 2 days old and had hiccups a lot, they went back in three days later to take out more. He had hiccups until he was around 2 months old. I was also concerned and the docs just blew it off saying it was normal.... Fri, 06 Jul 2012 20:42:55 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/2176587-how-many-ppl-have-multiple-children-with-hd/limitstart/10#3891459 I can't believe some of these story's my sons surgery team are top doctors at the royal London hospital they specialise in bowl problems in children and they have told me that it's not genetic at all and my next child won't have it! I only asked him that because my son who is 3 months has hd and a colostomy but my 3 year old daughter hasent been diognosed with anything but she's had constant toilet problems since birth she doesn't wear nappies an she goes through the night but she refuses to do ... Fri, 06 Jul 2012 06:16:31 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/introductions-personal-stories/3776856-mother-of-a-6-year-old#3891396 Sorry to hear about all your problems I'm glad your little boy is ok now.. My son has hd he had a op at 5 weeks old for a pull through but there was more infected than what they thought and he ended up being in surgery for 6 and half hours and came out with a colostomy which wasn't ment to happen .. His now three months old an next week we get to find out what date he will have his pull through we spent the first 5 weeks of his life doing home washouts which was heat breaking for us then he had ... Fri, 06 Jul 2012 05:35:46 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/3814491-hirschsprung-disease#3820294 Hi there, I have just seen your post - so i thought i would reply to your questionnaire. I have a a 9 year old son diagnosed with HD so here are my answers... 1) HOW OLD WHEN THEY ARE DIAGNOSED? DID YOUR PARENTS OR IF YOUR ARE A PARENT DID YOU ENCOUNTER ANY PROBLEMS AFTER SURGERY? WHAT WERE THEY? Believe it or not my son had just turned 8 years old when he was diagnosed - he is 9 years old now and we are waiting for a date for his pull through procedure. 2) AS A CHILD OR DID ... Mon, 11 Jun 2012 03:32:10 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/2949894-hd-kids-in-daycare#3779103 Thank you so much for your support! Fortunately, since my original post, my son has been successfully admitted into the appropriate age group room. He is doing much better, and I feel relieved. My son is 4 now and has come a long way. Hearing stories of others has made room for a lot of hope that he will be ok. Again,thank you!... Mon, 28 May 2012 09:15:58 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/3653661-many-questions#3778444 Claire, your story is so encouraging, as mentioned in my previous post my son is 9 years old and is due to go for his pull through procedure later this year - we are due to see his consultant in July then he will be on the waiting list - and we have been so nervous about the whole procedure - especially after surgery and what to expect, like a lot of things you tend to hear all about problems not the positive stories - so thank you for posting your story - it makes me feel there is hope that my ... Mon, 28 May 2012 01:17:59 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/3755634-crying-when-going-to-the-bathroom#3758705 It sounds like his sphincter is to tight. There is an operation that they can do, I have read about it before, sorry I cant remember the name. I would definitely not ignore it. Sometimes we parents have to get in the doctors face to get them to listen.... Sun, 20 May 2012 20:21:45 -0700 http://www.mdjunction.com/forums/hirschsprung-disease-discussions/general-support/3742820-later-life#3742820 am new to this but just to say surgical check ups certainly in the uk continue into teenage years am 35 and female also have hd and chronic pain and a child!!!!!! who is healthy apart frm the asthma !!!! want to give hope to all parents it will be ok my mum and dad survived not without some issues but so be it when i fell pregnant they were terrified for me but i had a girl so the gene skipped me this time have taken part in research over the years had blood gene typed and sent to the ststes nev... Tue, 15 May 2012 14:24:24 -0700