Hi,
I am sorry to hear your Little Girl has been going through so much. As a
Parent of a terminally ill Little Girl I can truthfully say that there is
nothing worse than watching your child suffer and feeling so helpless. As a
Parent you want to be able to make it all better and when you can't it's
hard.
While I have severe adhesions as an adult, I suffered from adhesions as a
young teenager as well. Currently,my adhesions are pelvic and abdominal.
But,my first experience with adhesions was when I was 14 and had my tonsils
out. It seemed like about the time I should have been getting over the
surgery my throat was hurting worst than ever. It turned out I had developed
adhesions in my throat and they were entangling nerves which was what was
causing so much pain.
I agree with you that is does seem odd for a child to have such severe
pelvic adhesions at such a young age.
>From what I have been through with our youngestDaughter as well as our older
two girls. I can tell you that 99% of the time when you see something like
the severe adhesions in your daughter at 8 years old there is a bigger
picture. Meaning that there is more than likely something underlying that is
the root cause of her issues.
Obviously,everyone is different so I am not saying this is the case with
your Daughter,but for our family it seems that the Girls and I have a
genetic disorder. Right now we are not sure exactly what we are dealing
with. We still have some more testing to do. But,the puzzle is starting to
fit together.
So my advice to you is that you think about any other medical issues your
Daughter might have had even as a Baby.
I will say that for me when I had my hystrectomy,which I really did not need
but they thought my peroids were the cause of my pain and in reality it was
adhesions and then of course after having a hysterectomy the pain only got
worse. They but a barrier in to try and prevent adhesions. Almost immediatly
after surgery I was in more pain than I was in before.
After numerous test and a severe post-op infection they did an MRI which
showed severe inflamation in my pelvis and abd.
It turned out that I was actually allergic to the type of barrier they had
used. But,before they figured that out I had started to run a high fever,was
covered in hives,my bloodwork was so out of whack that they were getting
ready to do a biopsy of a lymph node because my lymph nodes and glands were
so enlarged they thought that maybe I had lymphoma.
The biggest piece of advice I can give to you is DO NOT give up. If you
feel like something is not right with your child....keep pushing until
someone finds some answers for you. Before our youngest child got sick I was
more one of those "Yes Sir" or "Yes Mam" when it came to the Dr's and don't
get me wrong I appreciate everything they do for my daughter but if I am
worried about something or have that "Mommy Gut" feeling that something is
not right I speak up. Just remember you are her advocate and it seems like
you are doing an excellent job in searching for answers.
If I can be of ANY help to you at all PLEASE don't hesitate to email me and
let me know. I more than willing to help you in anyway possible.
I know as a Parent how desperate you become to find answers. Hang in there
and I hope things get better soon.
Ashley
--- On Sat, 10/10/09, IAS Admin (Tracy) <tracy.joslin@adhesions.org> wrote:
From: IAS Admin (Tracy) <tracy.joslin@adhesions.org> Subject: adhesion in children To: "Multiple recipients of list ADHESIONS" <adhesions@mail.obgyn.net> Date: Saturday, October 10, 2009, 12:04 AM Sender: alittrell@cenutrytel.net (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 appreciated.