my child has been suffering from a severe rash for the last several months that may be related to hirshsprung’s. Apparently people with this disorder have a more concentrated level of sodium which may be the problem however he did not develop the rash until 6 months after his procedure. We have not been able to get it to stay cleared up for more then a week or so. Any suggestions?
We use Resinol and I believe it was a God send…
Truly,
Mary
When we run out of ILEX I might try the Resinol. It’s got an analgesic in it which relieves pain. I bet it’s good stuff!
Thanks to all your quick posts I was able to place an order for iLEX that will be in on Monday. Hopefully we will be able to use this and get this nasty rash to go away. Currently we use a very mild wash called Aquanil and wash him in the sink for each change. We are going to try to make our own wipes as well to take with us to use when we are unable to wash him in the sink. Thank you all so much for all your support. It’s nice to know that we are not alone. I just wish we would have known about this site sooner. If anyone has any other suggestions we would greatly appreciate them.
Hi,
I know with my son and his rashes that we still deal with daily. We give him lots of baths, instead of wipes we use a warm wash cloth whenever possible, and we pile on the cream. How old is your child?
jerseybelle hirschsprungs-cpt8931@lists.careplace.com wrote:
Hi, jerseybelle!
My son had the greatest gi drs on earth I do believe. He had a total colectomy at 3 months and reconnection at a yr and had very few rashes, but we totally owe it to his drs. They told us to NEVER use baby wipes. We made our own out of the large gauze pads and mineral oil. We stored them in a wipe container, but made our own. If you have any questions about that let me know. We also kept a strict schedule of changes every 4 hrs except during the night (unless he did have a rash, then we changed him during the night too).
Our dr also told us NO JUICES! He only had formula or milk and sports drinks or pedialyte on occasion. (has something to do with the salt stuff and diarreah) Zach is 6 now and is super great!!! Hope it helps! Good luck and let me know if I can help at all! -zach’s mom
-----Original Message-----
From: jerseybelle hirschsprungs-cpt8931@lists.careplace.com
Sent: May 2, 2008 2:18 PM
To: rcsnell@peoplepc.com
Subject: [hirschsprungs] rashes
We use wipes, but the kind with NO fragrances and alcohol. But making them is a good alternative too. We also have to stick to a strict schedule for diaper changes. If we miss even one and he poops then we’ve got instant rash. Luckily he doesn’t poop much at night. We use ILEX if it gets to weeping/bleeding and that keeps him protected through the night mostly. For daily preventative care we use the old fashioned Desitin, not the Creamy kind, the Original overnight kind. It’s much harder to get off and doesn’t dissolve once the kids pee. (what’s up with that anyway?) We give him a bath almost every night to make sure he’s really clean.
Good luck!
jessica
I am sending you an attachment of some of my ideas for rashes. It is really
hard sometimes to get them cleared up. We had them for months after the
pull thru.
Best of luck, Crystal, mom to Ian, TCHD, 2 1/2, pull thru 4/3/07
----- Original Message -----
From: “jerseybelle” hirschsprungs-cpt8931@lists.careplace.com
To: f.allison@myactv.net
Sent: Friday, May 02, 2008 2:18 PM
Subject: [hirschsprungs] rashes
when my son was a baby we used a paste called Critic Aide. We got it from a wound care center that the GI had referred us to because his rash was so bad, we continued to purchase it at a local pharmacy. We had tried all the treatments and nothing had helped until we used Critic Aide. Hope this helps some.