LJGIRL and SARA
I would like to share the email I got today with
you 2 and the club as a whole. Here it is:Dear
Stacy,<br><br>Your mail was forwarded to the national office of
Prader-Willi Syndrome<br>Association (USA). Thank you for your
concern about your friend.<br><br>By-pass surgery has not
been effective in persons with PWS. There
are<br>several complications due to their inability to control
their eating. This<br>data is mainly anecdotal One
Italian surgeon writes: "The surgical<br>treatment of
morbid obesity in PWS has been attempted, but
neither<br>jejunoileal bypass nor vertical banded gastroplasty appears
adequate for<br>long-term control of the obesity.
Moreover, the surgical treatment of<br>severe obesity in
PWS is associated with a higher incidence of
complications<br>and mortality than in other obese pateints submitted
to similar operations."<br>So your advice to her
seems sound.<br><br>We are extremely worried about her
present weight. She probably has some<br>medical issues
due to her morbid obesity. Sleep apnea, Diabetes
II,<br>problems with personal hygiene, shortness of breath that
is placing an undue<br>strain on her heart, possible
respiratory complications, cellulites and<br>general fatigue
are some she might be dealing with. We recently had a
young<br>man die of obesity related medical problems, probably
of a heart attack, in<br>California. He weighed 500
pounds. Although he was high functioning, he<br>just
could not control his eating. (The hypothalamus is
effected and the<br>brain just never gets the message that
one is full.)<br><br>The best treatment for her at
this stage would be to get admission into
The<br>Children’s Institute in Pittsburgh, PA. They are world
renowned for their<br>program for persons with PWS. She
would be there for about 6 to 8 weeks,<br>losing weight
and learning how to manage her behavior. Ken Smith is
the<br>program director and his telephone number is
(412)420-2420. He could send<br>you literature to give to your
friend. I am assuming that guardianship is in<br>her own
hands, otherwise a guardian could expedite her going for
treatment.<br>Upon discharge she could get into a group home where
she would find peers<br>who have the syndrome and the
control that she needs to keep her weight<br>going
down.<br><br>Could you get her or a member of her family to give us
a call. We would<br>certainly support them and send
educational materials about the syndrome.<br>She should also
be receiving benefits such as SSI and Medicaid.
These would<br>also help in getting her into the
Institute.<br><br>If there is any other way we may be of help, please
email or call us at<br>800-926-4797, ask for me or
Janalee Heinemann, our Executive Director.<br><br>David
Wyatt<br>Crisis Intervention Counselor.<br>—–Original
Message—–<br><br>So LJ- there is some info that may help you! Good
luck and Godspeed!<br><br>Ice
October 1st, 2004 at 5:54 pm
Ya know Ice, <br>If people with PWS can learn to
control binging, why not also use wls as for successful
weight-loss? Obviously at such high weights the chances for
sudden death would equal if not exceed the chances of
death due to complications if the patient has good
follow-up and the behavior modification (control therapy).
It would just seem to me that, if they can learn
control , why not incorporate the two tools together?
<br>Just think. Diets have a 3% success rate for the
normal person, what are the stats for someone with PWS?
What is the quality of life like for a person with
PWS?<br><br>Dottie<br>Pre-op DS
October 1st, 2004 at 11:15 pm
Well stated, Dottie, and my point exactly. I
appreciate the info that Ice took the time and trouble to
obtain, but again, I have heard that extremely obese
people WITHOUT PWS have also a difficult time in telling
if they are hungry or full. I know I do. And I have
heard MANY stories of people WITHOUT PWS who have
consumed too much and have busted their staple lines. I
just think if this is something that LJ has decided to
do, then she has that right, and yes, I think that
follow up is essential–not just with someone in a
special situation like LJ, but with all who have WLS.
Without it, I am sure that the success rate goes WAAYYYY
down. I just don’t see the difference in someone with
PWS, (without severe developmental impairments)and
those who have a horrible eating disorder that causes
them to be morbidly obese.<br><br>Also, I don’t mean
to hurt you,Ice, but I have noticed that sometimes
you like to "stir it up", if you know what I mean.
You have to be aware at how people are going to react
to your STRONG suggestions. When someone seems, like
I said, a "know it all" it can really cause
resentment. I have not only seen it here, but in past posts
in other clubs I belong to. I would like you to
think of this as constructive criticism, however, I
have a feeling you won’t take my opinion well. That’s
Ok, I just felt like saying something about it. Take
it how you will and move on.<br><br>Good luck still
to you LJ and to you as well, Ice and
Dottie.<br><br>–Sara–
October 2nd, 2004 at 5:54 am
I am Italian and very opinionated and brassy at
times. This sometimes comes across strongly. I just wish
that more people would comprehend the INABILITY to
judge and control with PWS. It is SO different than
what we consider a person without PWS. I researched
the subject because when I first saw LJ’s posting
that she was a PWS client I thought wait a minute - "I
remember this being dangerous to a PWS patient." If
someone had a lets sayyyy hmmmmmm for instance a severe
blood clot or a heart problem that if they had surgery
it would endanger them in a very severe way….would
we say GO FOR IT? Would you? Would you say then that
well you are at a high risk now so go for it? There
are things that keep people from being WLS
candidates! It just isnt as easy as walking in saying ok I am
100+ overweight- lets do this- that is exactly why
there is preop testing and the such. We all know this.
I am just terrified that the dysfunction in her
hypothalamus will be such a danger to her postop. Altho I pray
that she has NO problems and ends up being a happy
healthy 135 lbs in a year or so…I just am worried and
that has gotten me ridiculed and b**ched at profusely.
I dunno people- what lengths will we go to to be
thin and healthy!? How much do we endanger ourselves?
And I do know that I tried everything - LJ has sat
here and vented about her parents eating around her
all her favorite foods and how it drives her
insane—-what is going to happen postop?? <br><br>Ice