Is there anyone who has the long segment HD, or knows someone who has it coz it is rare. My 3yr old has it and i would love to have more info about long term effects as my daughter suffers from very very watery stools and would like tips on diet for her. she takes imodium to stop the amount of times she has BM but I don’t want her to rely on meds all her life.
I think loose BM will be a lifetime curse. It beats the alternative. My daughter is 7 and doing well other than frequent water stools.
She does have accidents in the evenings, but that is just her.
I do know a 10 year old total hirschsprung’s and they have the same experience.
thank you for writing about your daughter it has helped me alot. i am very grateful to God that my daughter only had one surgery and then the pull through. she does suffer from very loose stools, but if they can carry on with their lives happily then thats all I pray for.
Exactly right attitude. My daughter takes no supplements, but I may be interested in trying imodium. she has grown quite used to the watery bowel movements. It is all that she has ever known.
I do worry about sleep overs and accidents and older children teasng, so I am working on her self esteem. Not too mention she has to very protective older siblings. That helps.
But the big turning point for me was when she turned 5, everything got much easier.
best wishes! Brian
is your daughter on any medication for the loose stools. My daughter is 3 and she had the same problem. However, in Novemeber 2006, she started taking Imodium twice daily and pectin once a day. She also started getting daily enemas. Now she has one BM a day (when she gets her enema in the mornings) and no accidents at all in between. She is also scheduled to spend a week at Cinncinati Childrens Hospital in March to get off the enemas and try to control her BM’s with laxatives.
Melissa
mom to Alexia 3 - VACTERL (including long segment HD, esophageal atresia/tracheoesophageal fistula, etc.)> To: mwarlick@hotmail.com> From: hirschsprungs-cpt7133@lists.careplace.com> Subject: Re: [hirschsprungs] long segment HD> Date: Mon, 28 Jan 2008 17:41:44 -0500> >
No, no medications. We just are told “we usually don’t see any problems
by the time they are 8”. Well, he is going to be 8 in 6 months and it
is pretty much still a nightmare. They seem to be addressing it as if
it is a control issue on his part - he isn’t trying hard enough. Thanks
for your story. It gives me some things to ask about.
-----Original Message-----
From: MelIrvin [mailto:hirschsprungs-cpt7133@lists.careplace.com]
Sent: Tuesday, January 29, 2008 6:59 AM
To: Kyle R. Neal
Subject: Re: [hirschsprungs] long segment HD