we got some bad news about my sons liver is showing early signs of liver damage. we are headed out to pit at the end of the month. it wont be the first time dealing with them. my son had a small bowl transplant which was later removed due to complications. he was on tpn before transplant for about 2years and after the transplanted bowl was removed he went back on tpn and currently still on which is why his liver is showing signs of damage. total years makes9 years on tpn. he does not absorb a thing cant live without tpn so it looks like another transplant might be our only option at some point. i've been doing reserch and looking at Omegaven. i'm planning on talking to the docs in pittburgh about it to see if it could even been an option. didnt know if anyone has any thoughts. thanks Lil
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liver
- By wildflowerlil
- Posted June 19, 2009 at 9:40 pm · 11 replies
- In Home IV feeding (HPN, parenteral nutrition)
- Shared with the public
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- By NinaBean
- Posted June 20, 2009 at 8:55 am
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Hello Lil, & Family,
Do you happen to belong to the TPN Support Group on Yahoo? If not I highly encourage you to join the group. Several people on that group are using Omegaven with sucess. You just need to go to www.Yahoo.com and do a group search for TPN Support.
Blessings,
Lesley a/k/a NinaBean
- By wildflowerlil
- Posted June 20, 2009 at 11:51 am
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no i do not thanks for the information!
- By LizAA
- Posted June 23, 2009 at 9:46 am
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I've heard that Omegaven has been used in pediatric patients and has helped reduce the incidence of liver problems.
Hope it's something that can help your little guy!
God Bless!
Liz
- By cp20855
- Posted June 24, 2009 at 8:45 am
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Would someone please talk about Omegaven? I gather it is something to prevent liver complications from TPN -- correct? Is it only for children?
Thanks,
Carol
- By alphabubo
- Posted June 24, 2009 at 9:56 am
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My heart just aches for your son and you. Liver damage due to TPN and a deteriorating digestive system were the reasons I had to get a multivisceral transplant about three and a half years ago in which I got a new liver, spleen, pancreas, stomach, small and large intestine. I do not really have any knowledge about Omegaven. To try and prevent the damage in my liver, my doctor added choline to my TPN formula and had me take prescribed Actigall and SAMe, a supplement that can be bought over the counter. These efforts did help for awhile, but my liver was just too sensitive. I had my transplant done at Miami, FL by Andreas Tzakis who used to work at Pittsburgh, and I have heard good things about the program there from others. I will be sure to keep you both in my prayers, and I hope that your doctors will be given the wisdom to make the best choice for you son. If I can be of any help, just let me know. Many, many hugs.
Warm regards,
Bobbiejo
- By GibBrogan
- Posted June 24, 2009 at 5:30 pm
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Probably the best intro to Omegaven is a wiki site that a mother of a boy with short bowel put together: http://grey.colorado.edu/shortgut/index.php/Omegaven
A Google search will also direct you to articles in the Boston Globe and Wall St Journal including a January 2009 article that tells the story of our daughter who was on it for 2 1/2 years: http://www.boston.com/news/local/massachusetts/articles/2009/01/09/old_fash ioned_lifeline/
We believe that it saved her liver and allowed her to grow without depriving her of TPN calories.
She has been in the 75th percentile for height and weight consistently.
Gib Brogan
- By Novagrad
- Posted June 24, 2009 at 8:01 pm
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I was going to mention to you about the Omegaven. I live in Massachusetts and they have conducted most of the research at Mass General. I was going to have to go on it if the last round of TPN caused liver problems like other rounds, but we decreased the lipids and I was OK (except for pancreatitis). Good luck - I hear this new form of TPN has done wonders for kids who have come close to complete liver failure!
Mimi
- By GibBrogan
- Posted June 25, 2009 at 8:21 am
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Done wonders, indeed. We know of kids with bilirubin numbers in the 40's who have returned to normal after getting Omegaven without any weaning of lipids. Ellie was fortunate to get on it as soon as she qualified for the study and her LFT's never got very high.
btw, the research was done at Children's Boston, not Mass General although I understand that some patients at Mass General have gotten it as well.
Gib
- By AlissasMommy
- Posted August 31, 2009 at 10:42 pm
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Hi, I am writing to ask about your transplant. my daughter Alissa is facing a multi-vis transplant. she is 2 and I am terrified right now. I really need some advice. As well as to just ask questions about what to expect. she is possibly getting a stomach, liver, panc, splean small bowel, and large bowel. I just feel so overwhelmed right now. She has been on TPN and Lipids since 12 hrs after birth 03/12/2007. Please email me at saracassidy_82@yahoo.com or on the oley email network.
Thank you.
Sara Cassidy
(AlissasMommy)
- By alphabubo
- Posted September 4, 2009 at 9:52 am
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Dear Sara,
I just wanted to let you know that I sent you an email last night. Please let me know if you got it or not. I hope that I can be of some help to you as I know how emotional a time this must be as it was for me, and it really helped me to be able to communicate with others who were going through similar situations. Please do let me know if there is anything else I can do to help. I will be sure to keep you and Alissa in my prayers. Many hugs to you both.
Warm regards,
Bobbiejo
- By Acushla
- Posted September 23, 2009 at 6:10 am
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What is Omegaven? I have a slight scarring of the liver probably caused by a lump which calcified after it grew too big. It finally broke up & passed out of the liver. My brothers lump turned cancerous & he died of it.
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