Short Bowel Syndrome Member Introductions


#45

Joel is on tpn for 18 hours a day he is 11lbs 9 oz as of last week and
almost 4months old. We cycle him on At 6 p.m. and he runs all night and then
cycle off at 12:00 p.m. the next day that way we can do errands dr appts etc.
The one thing that we are dealing with now is is aversion to taking a bottle
somedays he’s fine especially when off of tpn but lately he’d rather have it through his g-tube. He’ll take his binkey just fine. I’m glad to hear that your girls are doing well now. It is along road but I know that God doesn’t give us anything that we can’t handle. Even though we may think at the time we really can’t lol

thanks treena


#46

Hi everyone!

I’m 21 and i’ve had SBS (though i have never referred to it as an acronym regularly before) for all my life. I had a bit of a rough go of it initially when growing up–was on TPN until about the 9th grade and had more episodes of sepsis than I can count. During an 18 month period between 8th-9th grade I had about 5 of such episodes, the last two necessitating stays in the ICU at Denver Children’s hospital.

Since that last episode, when my IV was pulled as a precautionary measure and the decision made to delay putting in a new one for some period in order to minimize the chance of reinfection, I began to gain weight for the first time and have now been TPN free for about 7 years.

I’ve been incredibly active since. Growing up I was very rarely allowed to swim even recreationally because of my IV. Last year I was part of a modern pentathlon club. I’m working on breaking 3 minutes for the 200m freestyle.

In addition to all of the medical challenges, I’ve had (or witnessed, in some cases) quite a few disputes with insurance companies/medicaid etc and will soon have to take more charge of those sorts of issues in the next few years.

I’ve really been blessed with good health, and God willing, will continue to do as well as I’ve done the last few years.

It’s really interesting to hear from so many people with similar experiences. I didn’t know a website like this existed. I’ll be praying for all of you.


#48

Hi everyone. I’m a mother to Blake almost 8 months old. He was diagnosed with SBS due to malrotation at 5 days old. His currently on TPN and Lipids for 16 hrs a day. Doing really will with his oral feeding, just need to get him to eat more. This was an overwhelming experience for my husband and I. We didn’t know much about SBS until this happened to Blake. A lot of people don’t understand his condition and sometimes they as if he’s okay now. The fact is that his never going to be okay or normal. We can only try to raise him as normal as possible. Blake’s my first child so I’m able to spend a lot of time with him. Just want connect with other family who’s going thru the same as we are. Hope to share my experience and journey with everyone.


#50

Hi,
My first and only son is now 18 months old and has 6 cm small bowel. On TPN and Omegaven 16 hours as well.

Looks like we both have long roads ahead!


#51

Nice to meet you

How are things going with the omegaven and how high did his bilirubin get?
Joel’s was up to total 10.6 its now down to 6.1 after 2 weeks we are starting our 3rd week. They said his ferratine (sp) levels were still high but the pharmacist said that would take time.

How much is your son eating ? joel is @ 50 ml’s at night and
48 during the day plus 2 spoonfuls of cereal

how are your feedings going by mouth?

also since your son is 18months any suggestions with tubes and crawling and turning over?

Sorry for the 20 ?'s haven’t spoke to anyone for awhile since joel’s gotten
older he is now 6 1/2 months

I hope I didn’t scare you away with all the ?'s

Joel only has 10 cm left


#53

Hi
It took us awhile on the Omegaven. After 6 months we are now at 0.6 direct and 1.1 total. Got up as high as 8 direct and 14 total. Don’t be worried if he goes back up. We did great for the 1st 3 weeks and then went backwards. Now we are on a good track. It makes such a difference in their personalities, when they feel better they can do so much more. We started 2 days after Zachary’s 1st birthday. Wish we would have begun earlier but can’t change that now. Since the O he has been gaining weight, learning to walk and has a better appetite.

Zachary had 6 cm left no valve but full colon. Our last tests look like it has grown. We are discussing putting in a G tube but not sure about that yet.

We are on elecare, only with banana flavoring, taking about 30 - 60 cc at a time but throughout the day maybe 8 oz total. Food by mouth is slow but our doc said give him whatever he wants. One mom told me no more than 5g of sugar per serving for any food so I have been trying to follow that. Zachary never liked baby food.
We do a lot of cheerios, whole grain waffles, did like yogurt for awhile but not anymore, egg yolk, noodles…I have a little carbohydrate junkie.
No water, he only gets elecare or pedalyte to drink. Does like ice chips.

We have a little kids backpack that we use during the day and recently he has a spiral extension to his TPN. He is now on for 16 hours a day so it makes it much easier. That crazy pole is from 8p to 8a so much of it sleeps though. I will look for the name of the extension. Our infusion company was not familiar with it. Yuko, one of the moms on the short bowel site had it for her son. It is a godsend! Allows him to crawl around his entire room and have slack. When Zachary was smaller we dressed him in PJ’s all day. They were the ones that snapped down the front. Just seemed to keep the fingers away from the cords.
Today was the 1st time I ever noticed him move his cord out of the way when he wanted to go somewhere. He was standing and it was on his toes, he picked it up, swung it over and then went about his business.
Pretty amazing.

Where are you being followed? Where are you getting the Omegaven? We have been at Pitt listed for Transplant but now that Zachary is doing so well I want to really work on the rehab. Transplant is very scary.

What city are you in? We are in St. Louis MO.

Take care, look forward to hearing from you
Paige


#54

Hi Paige,

Thanks for the information that is so helpful. Glad to hear your little
guy is doing so well on the “O” we’ve had really good success so far.
We are suppose to have labs today so a little anxious when monday comes around . Our nurse should be calling soon.

I will show her the new extension and hopefully they will be able to get it.
We are being followed by Ohsu in Portland , Oregon.

Joel has his ileo cecal valve and all of his large intestine.
From what I here that is a good thing.

I know what you mean about the “O” pump it sure does limit you. We are on right now for 15 hours they tried to do 12 but his triglycerides were too high.Would have been nice, maybe as he gets older they can decrease.

anytime you need to talk or vent feel free to e-mail

treena


#57

Where is everyone going for the omegaven? I’ve done research on it and I know only a few hospital is using it at this time. Blake’s Billirubin is 11.5. Its always been high so I like to get him on the Omegaven…


#58

Hi Zack08baby,

So nice to hear your baby is doing well. You’re situation is similar to mine… We’re thinking about the G tube too but that’s because his billirubin is so high and the doctor want to stimulate his liver. I think if we can get on the omegaven we won’t need the g tube. Just need to find out where we can go to get it.


#59

This is the partial list of places on the short gut wiki:

Omegaven is available at the following hospitals:

  • Boston Children’s Hospital - Dr. Puder
  • Pittsburgh Children’s Hospital - Surgery Dept.
  • Toronto Sick Kids Hospital
  • Texas Children’s
  • Clear Lake Regional Medical Center;Webster TX-Dr.Bedi
  • Seattle Children’s Hospital & Regional Medical Center - Dr. Horslen

But I think there are many more, so please feel free to edit the page
(http://grey.colorado.edu/shortgut/index.php/Omegaven) and add others if you
know of them.


#60

We were able to get our local GI to follow under the Boston Protocol.
Saint Louis Missouri


#61

o.k. have a new ? Joel had his dressing change today and appeared to be sensitive to either the clora prep or the adhesive remover. Our nurse mentioned that they are usually sensitive to the remover. Any suggestions?
He’s bright red where they had cleaned. otherwise site looks great and no fever…

treena


#62

These are the hospitals that I have heard of other than the ones Yuko listed, I will also add them to the Wiki.

  • Hershey, PA
  • Birmingham, Alabama
  • Boston, Mass General
  • Tallahassee, FL
  • St Louis Children’s
  • LeBonheur (Memphis TN)
  • Minneapolis Children’s Hospital
  • Riley Children’s (Indiana)
  • Lucy Salter Packard (Stanford)
  • Seattle, Spokane
  • Medical College of South Carolina
  • University of Maryland
  • Strong Memorial (Rochester NY)
  • SUNY Buffalo
  • Denver Children’s

Not all of these hospitals have protocols set for general usage, but they have used it on individual patients.


#65

We only use alcohol/betadine for the cleaning, choloaprep causes too
much iritation for Zachary. One thing we did notice is that nystatin
powder helps. Since he is so wet in the morning I think it gets around
the outside of his dressing, gets moist and yeast develops. We don’t
use nystatin all of the time but you might try that.

-----Original Message-----
From: tinkers [mailto:sbs-cpt2331@lists.careplace.com]
Sent: Tuesday, January 29, 2008 10:44 PM
To: Paige Solomon
Subject: Re: [sbs] Short Bowel Syndrome Member Introductions


#66

Kids GI in St. Louis Missouri, Lynda Brady is associated with St. Johns
Mercy

-----Original Message-----
From: Abby [mailto:sbs-cpt2331@lists.careplace.com]
Sent: Wednesday, January 30, 2008 10:59 AM
To: Paige Solomon
Subject: Re: [sbs] Short Bowel Syndrome Member Introductions


#67

To tinker, not sure how you remove the dressing but when I change Blake’s I the dressing from the side and use the alcohol prep to gently rub on the adhesive as I pull the dress off. This losen the dressing and it doesn’t pull on his skin. I use to just pull the dressing slowly off of him but I found this way to work best. Good luck.


#68

Hi! I just joined and have not had a chance to add a picture of my son yet! Caleb was born at 24 weeks and 1lb. 6 ozs. He developed NEC and lost 3/4 of his small bowel. He was on TPN until he was 2 and then g-tube fed until he was five. Caleb is in the 4th grade and an honor student! He is VERY skinny and quite short, but was doing fantastic until this past Sept. when we found he had gall stones and kidney stones. He has now had 7 surgeries since Sept. 07 and will have another big one this Tuesday. He had life threatening complications during one of the attempts to get the massive kidney stones out! I am hoping to learn from everyone else on here, but also hope I can help teach others about the threat of kidney stones in short bowel kids!


#69

I am out of the office on Friday Feb 22th and Monday Feb 25th. For immediate attention please email Linday Taylor at ltaylor@color-art.com or call her at 314-432-3000x608.


#70

Hi everyone I am 44 yrs old and recently diagnosed with SBS due to a surgery mistake. My doctors are telling me I should be much better by now it happened in Oct 2006.


#71

Hi Everyone, I am 35 years and have been living with the symptoms of SBS for most of my life…although I was not formally diagnosed until 5 years ago (I have a complex medical history which clouded the picture). This was a few years after having surgery which involved a resection of my small intestine. At that point I was dangerously below weight and malnourished due to absorption problems. I have since been placed on TPN and gained almost 30 pounds in the process. I am hoping to be both supportive member of this site (for others struggling with the same issues) and to use this site to learn more about this disease. Thanks!