Re: adhesion in children

From: Kristie (
Wed Nov 4 19:58:30 2009

I am so sorry about your little daughter. I am responding to you because my son has had over 35 operations, and some of them were as big as you can get. ( his longest one was 24 hours long and we traveled to Norfolk Va from Central Calif)... He was born with his bladder on the outside of his body. Anyway, he has major scar tissue as you could imagine. He lives in pain. But is always happy. I don't get it. I don't understand it. What I am saying is, children who are born with this condition and others, don't know life any different. His daughter is two and has Juvenille Rhemitiod Arthritus very bad, and I swear she can give her own shots....... The issue with you is, since she was older, what can you expect?........and I don't know. I only know that even though my pain is out of this world, I would rather have it then have my kid suffer. It's a terrible thing to watch. I know people who are on the Bladder Exstrophy site, most of them go to John Hopkins. And they go to the head Urologist another Dr Gearheart. I wish you the best.....I feel bad for you. Hugs Kristie Liston

At Mon, 12 Oct 2009, IAS Admin wrote: >
>From: [] On Behalf Of
>Sent: Sunday, October 11, 2009 1:17 PM
>Subject: Re: adhesion in children
>Oh, I am so sorry for your little one.  I so wish I had an answer.  Please
>keep searching for her and don't give up.  She has to be a strong girl and
>she will get that from her Mama!  Keep us all updated!

>In a message dated 10/9/2009 9:04:12 P.M. Pacific Daylight Time,
> writes:
>Sender: (Julie)
>Subject: adhesion in children
>Hello, my 8 year old daughter (not started her period) had a laparocopic
>appendectomy (determined-chronic appendicitis) on August 28, 2009 and
>walked bent (with pain) over until they did a CT scan 3 weeks later and
>discovered what they thought was an abcess (E.  coli).  She then was
>scheduled for surgery to drain the fluid pocket.  Once they started
>laparscopically surgery, when they got in they realized she was full of
>adhesions.  They to switch to a laparotomy.  All of her pelvic orgrans
>were frozen with the adhesion.  They said they have never seen anything
>like it in a peds patient.  The surgeon used seprafilm during this
>surgery to try and prevent more adhesions.  We are now a little over two
>weeks out and she hasn't really improved.  She has had another CT Scan
>and it does not show any fluid pockets, but it does reveal more
>inflammation than before.  She still can't walk without holding on to us
>and cannot sit up or stand up straight.  Has anyone had experience with
>peds adhesions? Or does anyone have any recommendations of doctors in
>Missouri for adhesions? Thank you, any assistance would be greatly

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