STEP Procedure


#1

Hi everyone,

New to this forum. My son was diagnosed with SBS malrotation at 10 days old. he only has 9 cm of the small bowel. My husband and I are working with Omaha Nebraska to either get him listed for transplant or do the STEP. They won’t list him for transplant because Blake is doing so well on TPN and growing. The STEP procedure is what the team had suggested but with 9 cm what can they really do with it?
Does anyone know more about the STEP process, how it works and what’s the possibility of him being off TPN after getting the STEP done? or will they ever be off TPN ?


#2

I will be out of the office Friday Jan 18th and Monday Jan 21st. For immediate attention on Friday please email Linday Taylor at ltaylor@color-art.com or call her at 314-432-3000x608.


#3

My daughter had the STEP at Vanderbilt Children’s when
she was 2 weeks old. This was after a procedure to
cut out all the dead bowel. She had at the time 26 cm
and it went to 76cm with the procedure. My surgeon
was GREAT Edmond Yang. I would do it again if needed.
She has been off TPN for 8 months and is 21months.
She was on it since birth. We had some problems still
but not with the STEP more with bacteria build up
which you can get with Short gut. If you can get any
length it makes a world of difference. Katie still
has a feeding tube but we are working on getting it
down to just the nights. She eats by mouth but it
took til she was 10 months. If you need any help with
anything let me know. But again I would do the STEP
again. Good luck Kelly
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Hi everyone,

New to this forum. My son was diagnosed with SBS
malrotation at 10 days old. he only has 9 cm of the
small bowel. My husband and I are working with Omaha
Nebraska to either get him listed for transplant or
do the STEP. They won’t list him for transplant
because Blake is doing so well on TPN and growing.
The STEP procedure is what the team had suggested
but with 9 cm what can they really do with it?
Does anyone know more about the STEP process, how it
works and what’s the possibility of him being off
TPN after getting the STEP done? or will they ever
be off TPN ?

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#4

You might be interested in the short gut wiki page on STEP:
http://grey.colorado.edu/shortgut/index.php/STEP

This includes a very strong caution from one parent who opted against STEP,
and a summary of more positive assessments from discussion on the yahoo short
bowel syndrome group.

Anyone can add their experiences to this page so others can benefit.

On Tuesday 22 January 2008 at 08:17 am, krich wrote:


#5

Thanks for the information krich. How many surgery did you daughter had to have to get the length that she had now? I’m told that if Blake does qualify for the STEP he may need 3 to 4 surgery.


#6

Katie, Just had one surgery to actually do the
procedure, but we had one more because she had a part
of the bowel that was questionable even before the
surgery. Total Katie has had 4 surgeries from birth
to 4 months. Not sure where you are but my doctor
trained with the doctors who invented the STEP in
Boston and is awesome. I would waste a call to Boston
or to Yang at Children’s. Just to get some more info.
I will say they do not have extensive research on the
STEP so it is a faith that it will work. That said it
did work for Katie and like I said she has been of TPN
for a while now and is doing much better. Let me know
if you need help with anything. Kelly
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Thanks for the information krich. How many surgery
did you daughter had to have to get the length that
she had now? I’m told that if Blake does qualify
for the STEP he may need 3 to 4 surgery.

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#7

My grandson was born with SBS and had 27cm of small intestine. He was born in Houston, Tx. and at 2 mos old , we had him transferred to Omaha. He is in the intestinal rehab center and is doing very well. He has had one step procedure which lengthened his intestine to 67cm. That was about 3 months ago. He is doing better, however, still working on the absorption. It takes a while. He is on TPN 16 hrs a day and also has a g or gj or whatever in his stomach. He is going to feeding therapy. Their main goal is to get his intestine working so that he can get off of TPN. They will do everything possible to make that happen. Unfortunately, it doesn’t happen for everyone and for some, it takes a long time. Dr. Sudan has done the most step procedures of anyone and we are very pleased with their care. I hear Dr. Yang is also very good. Reed is 9 months old. There is another patient there who was told she had 5cm of small intestine and when she got to Omaha, she had 17cm. She is in the program, also. Has not had step and is not listed for transplant. She is doing really well, also. I can put you in touch with that mom if you would like. You can visit Reed’s website at caringbridge.org/visit/reedcather


#8

Thanks kaab1226 for the info. My husband and I are going to Omaha Feb the 9th. We’re going to get Blake re-evaluated again. He now has 9cm but from what we were told by UCLA team its too short to do the lengthening. When we first went to Omaha they said that he wasn’t eligible for transplant… Now we’re going back to try out the rehap program.
I just hope this time around something can be done for him. Blake is doing really will but his bilirubin is high.
Was your grandson intestine dialated before they did the lengthening? How many surgery did it take?
I’m just amazed by these babies and how well they can cope with all the things they go thru. If your grandson’s still in Omaha maybe we’ll run into him when we’re there. Blake and I will be there for about 8 weeks.


#9

I am out of the office on Monday January 28th For immediate attention please email Linday Taylor at ltaylor@color-art.com or call her at 314-432-3000x608.


#10

Jenn,
How do you like the Rehab team at Omaha?
Paige
psolomon@color-art.com

-----Original Message-----
From: jernn [mailto:sbs-cpt7559@lists.careplace.com]
Sent: Tuesday, January 22, 2008 12:35 AM
To: Paige Solomon
Subject: [sbs] STEP Procedure


#11

I guess their okay, I really didn’t spend much time with them when we were there the first time. The coordinator’s are nice.
Before we went with them I’ve called around and other center didnt’ really want to talk to me or answer any of my questions. Omaha seem to know what they’re doing and they answer any questions that we may have regarding to his care. There’s just so many test to get done. I just hope this time around we get something different than what we already know about Blake.


#12

Hey,
Yes my grandson is still in Omaha. He has been there since June 13th. He is
an outpatient in the Intestinal Rehab Center. He had the step procedure done
at the end of October and yes, his intestine was dialated.
Yesterday,my daughter had to take him in to the hospital because he was
running fever and throwing up. They admitted him to rule out infection. They did
an upper GI and looks like some parts are dialated or either it is his
colon(he only has 1/2 of his colon) that is dialated…they are going to do a lower
GI tomorrow to make sure of what exactly is going on.
His bilirubin was over 10 when we got to Omaha, but it is in normal range
now. They took him off the lipids pretty fast and that really helped. He has
been very healthy since he has been there, considering his condition…They do
know what they are doing. Before we went there, we were trying to go to Boston
for Omegaven, but the insurance company closed the door on that. I think it
was God’s doing, because if he has a chance to come off of TPN, I believe it
will happen in Omaha.
There is a good chance that I may go for a visit during the time you are
there, so please send me your name (first and last) cause of the privacy issues,
they don’t give out much info when you are looking for someone there!
Kathy Bourgeois

**************Start the year off right. Easy ways to stay in shape.


#13

I hope to see you there too Kathy. I hope everything will be okay with your grandson.
I just received a call from UCLA’s doctor today and they said that they will not be able to do the lengthening on Blake because he does not have enough intestine… Our hope now is to see what Omaha can do for him.

My name is Nou Verrett. We’ll be staying at the hotel in the hospital while we’re there. I know the hospital has meeting some nights for parents so I hope to see you there. Maybe we can get together if time permits.