Hirschbrung's Disease

From: IAS Admin (tracy.joslin@adhesions.org)
Wed Jan 16 21:49:58 2008

From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of rjtucker@peoplepc.com Sent: Friday, January 11, 2008 1:56 PM Subject: Hirschbrung's Disease


Very sorry to hear your child must endure this very challenging disorder. I also have Hirschprung's Disease and have a web address for San Francisco Children's Hospital at Palo Alto for you that is very helpful.

  There are many references for parents within the address above and should help you. One of the reasons children develop severe rash is due to the fact that antibiotics required to treat the many abdominal infections also kill the good bacteria. Yeast (fungus) is a natural flora of the body and its purpose is to feed the good bacteria. When it's not being eaten, the yeast can then grow out of control.

There is no reason why your doctors are not treating the fungal infections, however. Although it's difficult, fungal medications are available and allowed to be used in your child's age group.

You need to realize that not only are you your child's parent, but you are also one of the most important members of your child's medical team. You are his health advocate. Take this job very seriously and let your doctors know that you expect to be treated as a member of the team. When your child is not getting better or getting the care you feel he should be getting, don't back down when they say "it's like fighting a losing battle." Press on. This is not acceptable.

I'm sure glad you have found the adhesion group because Hirschprung's Disease patients often suffer the formation of adhesions due to the extensive surgeries they can sometimes require. Please be sure to educate yourself as well as possible so that you can anticipate problems before they occur and even prevent many of them. The web address above will be helpful for you to do that. You can also print off what you learn on line and take it with you to your doctor's office to share and ask their take on what you're learning. Don't hesitate to question anything!!   Best of luck and will be praying for you and your son. Reba   -------Original Message-------   From: IAS Admin \(Tracy\)Date: 1/11/2008 5:57:38 AM To: Multiple recipients of list ADHESIONS Subject: FW: hirschbrungs diesease   Sender: sjryan83@aol.com (sara) Subject: hirschbrungs diesease   hi i live in the uk and when my son was born it was the first time i had heard of hirschbrungs.  no one in my family has had hirschbrungs.  my son is now 2 years old and he has had been addmitted to hospital so many times now 2 times for his op's and 3 times because he had bowel infections where he had to be put on drips.  he was also addmitted because he had very low blood counts, he had a blood transfusion.  ever since his pull through op he has suffered from really bad nappy rash, the doctors say its a fungal infection and it is like fighting a losing battle.  hes been on antibiotics and different kinds of cream.  i would like to find out other peoples experience with this diease.   i have noticed aswell that hardly anyone in mk where i live have heard of hirschbrungs.  the specailist that helps my son is in oxford jr which is an hours drive from where i live.  we have a hospital in mk but they dont have a specillist.   i would be grateful to hear from anyone   thanks sara

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