Hirschsprungs

daisy0513

Hi all.

I am usually a lurker but I noticed on the colostomy post below that their are a few moms of kids with Hirschsprungs on here and so I decided to jump in. My DS also has Hirschsprungs and had a pull-thru four weeks ago when he was three weeks old. He is doing really well and has gained four pounds since his surgery! 

Have any of your kids with Hirschsprungs had any long lasting problems or issues?  We have to begin dilating him twice a day but so far, that is our only issue.

Thanks for letting me join in! I'm sure I will probably have more questions as time goes on

SweetMonkey

Hi

Both of my boys have HD. My boys have done really well, I have talked to other mother's whose children continue to have problems even after the pull through.

I think one the only "long term" issues if your son is doing realy well would be extra gas than normal / sensitive tummy to foods and when HD kids are younger and potty trained they can have smearing. They can get "track marks" in their underwear some kids have big issues w/ this and have to change underwear throughout the day and other kids it's just a minor issue.

my 1st born had this issue, but this was before the internet so I had no one to talk to about this stuff. I thought all that time that he was being lazy and not wiping good enough, poor honey. if I knew then what i knew now things would have been easier. His was not so bad that you could smell him, but I guess some kids leak more than others and now that he is a teenager it does not seem to be as much of an issue.

Has your son had diaper rash since the pull through? that is a issue for lots of HD kids, since the poop is not as processed. I have some tips that might help if that is a problem for you guys.

Our Dr said we only had to dilate until they were eating solids and having more formed poop. I got lazy about it after a while and was scared, I had the surgeon check him to make sure it was ok and he was fine. so if you find your self busy and missing a few dilation here and there, it should be fine.

any question al ways feel free to ask.

daisy0513

Thank you for the response! He had a really bad diaper rash for about a week after the surgery. We got it under control to just an occassional mild rash using SensiCare. But since the dialations began, it seems to be getting a lot worse again. I would definately love suggestions. The dialations are bad enough without adding in pain from diaper rash.

We really hate doing them, but according to the surgeon, I think we probably will have to for a few months.

Thank you for sharing your experience!

SweetMonkey

There are a couple of things other HD moms use, one of the most popular is Ilex paste. The key w/ Ilex is you have to use Vaseline over where wherever put the paste otherwise you will glue the diaper to the baby?s skin (no one told me that before I used it). When you do diaper change most of the paste will stay on the skins and therefore protect it. It?s not my fav to use unless I really have to.

 

What I do like is critic aid paste, it?s not as powerful as the Ilex, but easier to use and works great, you put it one just like any other baby rash cream. Now for the most part he is rash free we use the everyday stuff you can buy at the store, the Ilex and Critic aid paste we buy online at medical supply store.

 

I also love Aloe vesta cleansing foam, great in getting all poopy residue of his bum w/out having to ?scrub?

 

Best of luck w/ your LO and if you ever have a question just ask