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At 3:14 PM +0000 11/3/01, wrote:

>Hi everyone just want to thank all of you that responded to my

>questions. Im a little confussed now because my Dr told me I wasnt

>getting the switch because there have been complications with leaks.

Please check with another surgeon. Dr. Elariny recently wrote about

leaks in a slightly different context (discussing DS vs. the

Scopinaro-BPD procedure):

>I have also had a discussion with another surgeon who stopped doing the DS

>in favor of the Scopinaro operation. He also quoted a higher leak rate and

>pancreatitis rate and had one patient who died as a result of pancreatitis.

>I have had one case of mild pancreatitis, no deaths, and since I have

>started hand-sewing the duodeno-ileal anastamosis (probably the last 50

>cases), I have not had a single leak. I think alot of surgeons' problems

>come from two things done during Lap-DS surgery. 1) stapled duodeno-ileal

>anastamosis; 2) devascularizing the pylorus to get the duodenal stump

>disected. If you devascularize the pylorus, and totally detatch it from its

>surrounding structures, then you are asking a lot to expect it to continue to

>function. Another thing is the extent of gastrectomy performed adjacent to

>the pylorus and adjacent to the esophagus. The closer you go to these

>structures, the more likely they are to affect the gastric emptying. We

>avoid doing any of these things. In any case, the Scopinaro procedure is

>still a good operation, but it does increase the risk of B12 and Iron

>deficiency compared to the DS, and there may be a higher stomal ulcer rate.

>

>Of course, I do either, so I have no personal bias toward one or the other.

>

>Sincerely,

>

>Hazem A. Elariny, MD, PhD, FACS

>Advanced Laparoscopic and General Surgery Associates, PLLC

>www.alagsa.com

>1635 N Mason Dr.

>Suite 455

>Arlington, VA 22205

>

> (Fax)

>helariny@...

If you are at NAL, you are certainly close enough to at least have a

consult with him.

--Steve

--

Steve Goldstein, age 61

Lap BPD/DS on May 2, 2001

Dr. Elariny, INOVA Fairfax Hospital, Virginia

Starting (05/02/01) BMI = 51

BMI on 10/25 = 39 (-75 lb.) -- No longer M.O.

Losing more slowly than most, but enjoying renewed health and life in general.

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  • 3 years later...
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Hi Amelietrice,

Please don't expect a positive result from the UPD#7 test. Only about

10%of RSS kids have it because of UPD#7. The rest are idiopathic.

You are right, it really doesn't matter if he is RSS or SGA, the

treatment is the same. Although, in some research reported at the Magic

convention by Dr. Wolman a fewyears ago, he noted that RSS kids have a

higher deviation from the growth curve than SGA kids and that RSS kids

showed a better result on growth hormone than SGA. I'm sure B.

can give you the exact results he presented.

No, doctors don't automatically put kids on periactin. In fact some

object to it saying it does no good. You might have a bit of an

argument with your doctor about this.

If you do start periactin, often (but not always) there is a big

appetite spike initially then it seems to taper off and not work. What

is happening is kids adjust to it but it raises the long term average

calorie intake. Maybe they eat an extra 50 to 100 calories a day. You

might hardly notice that until you stop for awhile. Some doctors and

parents go on a periactin hoilday. For my son, this proves to be a

little rough becasue just when he is used to not having it, we start

again and he has to readjust all over. For some kids it does cause

drowsiness and irratbility. We avoid that by giving periactin just

before dinner. He eats and shortly thereafter we put him to bed.

Last, for my son, there seems to be synergistic affect between growth

hormone and periactin. Stop one and the other becomes much less

affective. Yes, growth hormone does have some appetite stimulating

properites. But it is not a big affect, at least not for my son. Others

have had different results. As a nurse, you probably notice that all

the time.

I hope this helps.

Ken M

:)

> I just wanted to say thanks to all of you that have responded to my

> post. You guys are quick! I feel a little better knowing that I am

> already doing a few things right, like adding high calorie stuff to

> his food. I guess we just have to wait and see how the blood work

> turns out. The endocrinologist said we will start growth hormone in

> another 6 months to a year, but he wants to watch his growth for a

> couple of months before we start, to get a good baseline. He said it

> was good that we are getting evaluated now when he is 13 months, lots

> of opportunity to grow. I guess we'll be going down this road whether

> he is SGA or RSS. It sounds like the periactin will be a good thing

to

> bring up, especially if it helps him take in more calories for the

> extra growth. Do they automatically put them on it or will his

> appetite increase with the growth hormone? (I know, I ask a million

> questions; I'm a nurse so it comes with the territory.) When it comes

> to info about this stuff I feel like I need to soak it up like a

> sponge!

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  • 4 years later...

Thanks to my air family and friends for their thoughts and prayers for . I talked to a mutual friend who said recently a couple of other friends visited and they said all he did was sit in a chair and hold his dog. I tried to explain even though he looked like he could go for a walk like they tried to do it was not possible. This just emphasizes the fact people "DO NOT GET IT". I tried to explain to my mutual friend,Jonny but I feel my attempt was futile. We look so good!!!!!!!!!!!!!!!! Maybe if we could take a plastic bag and put in a small pinhole and let them wear it for a few hours (or days) they might have a better understanding of a similar feeling.

I am glad I have a place to go where people "GET IT".

Thanks again for prayers and comments,

Joe

   JOE & JOANIE LAMENSKIE

IPF JAN. 2008

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Joe

i think someone recommended demonstrating pf using a straw

i forget the technique but maybe you hold one end while you breathe in

then tell them that is what it is like for you

does anyone else remember how this demonstration goes? or is this the one for COPD?

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: THANKSTo: "Breathe-Support@yahoogrou" <Breathe-Support >Date: Friday, November 20, 2009, 8:36 AM

Thanks to my air family and friends for their thoughts and prayers for . I talked to a mutual friend who said recently a couple of other friends visited and they said all he did was sit in a chair and hold his dog. I tried to explain even though he looked like he could go for a walk like they tried to do it was not possible. This just emphasizes the fact people "DO NOT GET IT". I tried to explain to my mutual friend,Jonny but I feel my attempt was futile. We look so good!!!!!!!! !!!!!!!! Maybe if we could take a plastic bag and put in a small pinhole and let them wear it for a few hours (or days) they might have a better understanding of a similar feeling.

I am glad I have a place to go where people "GET IT".

Thanks again for prayers and comments,

Joe

   JOE & JOANIE LAMENSKIE

IPF JAN. 2008

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