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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