LJgyrl/willi-prader
I have talked to you before and I am very
concerned about this. You mentioned you had willi-prader
syndrome….this is the one main things that is a NO-NO to
undertake this surgery. I can’t see a surgeon allowing you
to go thru with the surgery if you truly have this
syndrome…..I am just worried that you will hurt yourself
physically with binging post op!! Please look at this long
and hard before going further!<br><br>A concerned
buddy<br>ICE
September 25th, 2004 at 10:53 pm
Hey Ice, what is willi-prader syndrome? Never heard of it.<br>Vicki
September 26th, 2004 at 5:33 am
Prader-Willi syndrome is a genetic disorder
characterized by diminished muscle tone (hypotonia), feeding
difficulties, and failure to grow and gain weight (failure to
thrive) during infancy; short stature; genital
abnormalities; and mental retardation. In addition, beginning at
approximately age six months to six years, affected individuals
may develop excessive body weight (obesity),
especially in the lower regions of the body (e.g., lower
abdomen, thighs, buttocks). Progressive obesity results
from lack of physical activity and excessive intake of
food, which may be associated with no feeling of
satisfaction (satiety) after completing a meal, an obsession
with eating, unusual food rituals, and binge-type
eating habits. <br><br>I worked with mentally
retarded/developmentally disabled adults (who were child like, I loved
this job! they were GREAT) One of them had
willi-prader and we literally had to lock each and every
cabinet and the fridge to keep her from eating
CONSTANTLY. These patients have no ability to stop
eating…they eat eat eat. It is uncontrollable. So do you see
why I am concerned?<br><br>Ice
September 26th, 2004 at 9:35 am
Ice:<br><br>Excuse me, but how is this different
than any of us? I am out of control with my binging
and I cannot lose weight on my own. I have seen this
woman post before and obviously, her intelligence is
normal. I know along with this syndrome, developmental
disabilities can occur. I do think that she doesn’t have as
much of this problem, so I would think she would be
able to control herself, but needs surgery as a tool,
just like we all do. I have read articles where some
doctors believe that obese people lack the chemicals in
the brain that tell us when we are full or hungry. So
if this is anywhere near true, I would think this is
the same situation. Don’t you think her doctor, if
she has gotten this far–far enough to schedule a
surgery date–then he knows about her syndrome. I have
never heard that this surgery is a " no-no" with this
syndrome. Don’t be so discouraging.
September 26th, 2004 at 2:56 pm
Thanx so much for the support Sara! Because I’m currently going through a rough
time trying to control my eating. And is really depressed as well!
September 26th, 2004 at 9:35 pm
I am not being discouraging! I am being honest
and upfront. Some people and I am NOT saying that
this is the case, will hide things from there surgeon
if they want this surgery bad enough. This syndrome
is NOT just a binge type behavior. It can LITERALLY
cause a person to eat non food articles. They have NO
control over the desire to eat and feel NO sensation or
severe lack of the feeling of fullness. I am concerned
with the post op capabilities of actually tearing the
staple line. We all know this can happen. I wish I could
remember the medical site that surrounded this issue,
saying that this syndrome was one of the very few things
that a surgeon should deny a candidate surgeon for
weight loss.<br> I have talked to LJ about this and am
worried about her! Should I apologize for showing true
concern on what could happen to her post op? I think
not.<br><br>Ice
September 27th, 2004 at 12:19 pm
Ice:<br><br>It is nice of you to worry, but what
other options do you feel this woman has? I believe I
read in another club that she weighs 400 or 500
pounds, something like that (sorry if I am wrong, my
memory isn’t always very good). She has the intelligence
to avoid eating coffee tables or the family dog. I
think with the syndrome, if you do have developmental
disabilities, or especially in young children, they will eat
even non-food items. From hearing this person
communicate, I doubt she will have this problem. Yes, I think
she will struggle with WANTING to binge the rest of
her life, but so will I. I just don’t see how it is
any different than what us morbidly obese women go
through WITHOUT Prader-Willi syndrome. I do think she
should tell her regular family physician EVERYTHING and
at least have her doctor or find a good one to
follow her throughout the rest of her life. It sounds
like she has made up her mind. While I don’t blame you
for worrying, I find it hard to tolerate people who
think they know everything. Sorry–just my opinion. So
if you have any suggestions, Dr. Ice, I am sure LJ
would love to hear her alternatives. -S-
September 27th, 2004 at 11:00 pm
Look everyone!! First of all, again I appreciate
your concern for me Ice. But according to what Sara is
saying, she’s right. Because everyone, including my
family is telling me I have the Prader-Willi Syndrome.
And yes, I do have the urge to binge a lot. But I
believe I just have the typical eating disorder that a
morbidly obese person would have.<br><br>I mean, in the
past, I was waaaaay worse than I am right now. I used
to always binge until I purged or puked. <br><br>I
believe, from what I’ve been hearing from others, the
surgery would be a great tool for me. Those who don’t
believe that, just give me a chance al right!
September 28th, 2004 at 5:40 am
From what we discussed last night - you said you
met 80% of the diagnosis of this syndrome. The only
sure way is a DNA test since this is a chromosomal
disorder. You are young and have discussed how you must go
along with what your parents say to make life bearable
and they are the ones who say you have it…so I
guess we don’t know do we. And as far as dr ice dear, I
do believe 2 years of researching Neonatal disorders
at Louisiana State U and carrying a 3.88, I do have
enough "know it all" to not want to hear in six months
LJ perishing while scarfing a footlong at Sonic!
This is not simply a desire- it is something that has
control in the form of chromosomes! Not a simple chemical
imbalance that can be erradicated with simple medications!
You do not understand how strong these urges are!
More often than not - adults have to be placed into
residential facilities to be 24/7 monitored to keep them from
literally hurting or letally ingesting something. It IS NOT
the same thing as me saying gee eating a coffeetable
is not a good thing! It is more along the lines of
yummy a ROCK! a piece of chalk….coins, age has no
bearing on the decision to eat or not to eat because
THERE IS NO DECISION MAKING PROCESS! I have NEVER
discouraged ANYONE from wls! NEVER! Until now and this was
out of love…..so if I am a know it all because I am
educated? I will proudly wear the banner!<br><br>The end of
this conversation!<br>Ice
September 28th, 2004 at 11:00 am
by the way - the "lashing" so to speak was not directed at you LJ. It was for
Miss Sarah.<br><br>Ice
September 28th, 2004 at 3:03 pm
And stay tuned–<br><br>We will hear how MISS Dr.
Ice performed her very OWN RNY procedure
herself!<br><br>Give me a break.<br><br>oh yeah. If ICE says the
discussion is over, then I guess it’s over.
<saluting><br><br>Good luck, anyway, LJ.<br><br>MRS. Sara ( no H, thank
you very much.)
September 29th, 2004 at 7:05 am
tHANKS for the info Ice.<br>Vicki
September 30th, 2004 at 4:28 am
I do hope that LJgyrl has informed her surgeon
that she has or may have this synodrome. I understand
that she is looking at having the Duodenal Switch.
This not only reduces the stomach size. It also
creates mal-absorption to reduce caloric intake. Also,
the stomach size is slightly larger than the RNY.
Furthermore, the pyloric valve is kept intact and functioning.
I would think that if the surgeon is aware of her
condition and is willing to procede, and she has good
follow-up care, she has a good chance for success.
<br>Furthermore, a support group can help her remained focused and
to seek reassurance during rough-times. <br>With the
severity of her obesity, what are her chances of a happy
and productive life? What other option/s does she
have? How else do you treat the obesity of this
condition?<br><br>Dottie<br>Pre-op DS