Intestinal Fortitude: Healing a Child's Defective Liver

Omegaven DOES save lives

Thank you for publishing your article. It was an article in the paper that first told us about Omegaven. My son Peter has been on Omegaven for 17 months.

After 7 months on standard TPN we had the following scenario: unpredictable bleeding episodes requiring constant cardiac monitoring and transfusions several times a week, the inability to leave the ICU for 6 months, an orange puffy child with bilirubin levels in the 20s, and at the end of six months on the ICU an offer from one of the doctors to place him in palliative care to die.

We heard about Omegaven and had Peter flown from the ICU he was in to the ICU in Children's Boston to receive Omegaven. Within two and a half weeks Peter was able to leave the ICU to a regular floor, and within two and a half months on Omegaven Peter came home.

Peter is an active toddler now, walking, talking, and happy. He is still on TPN but the threat of impending death from liver failure is gone. There is no doubt that Peter's life was saved by replacing the regular TPN fat with Omegaven.

"you have already lost him"

This was a comment made to me by a Doctor during a discussion concerning my grandson, Carter. Carter's mother made the decision to take him to Boston after several months of prayer, research, and discussions with local doctors. She was convinced that Omegaven was the answer for Carter.

I went to Boston after Carter was on Omegaven for five weeks and saw a remarkable difference in him. Yes, he did have to have a transplant as you have already read in his Mother's Blog but I can tell you that I believe the Omegaven strenghten his body and was a large factor in his survival and recovery.

I have met Dr. Puder and his staff and I have never met a more caring and committed physican. I don't need to defend him if you have doubts contact him and see how fast he responds. His actions will speak for him. I have also met other parents, who will also tell you that Omegaven has helped their child. Chelle is still very passionate about his work with children and is commited to helping other parents learn more about Omegaven. Helping children live longer than it takes Lipids and TPN to destroy their livers has become one of her goals.

Chelle wanted Carter to be one of the first miracle children to return to Dallas, a healthier child because of Omegaven. He will be one ot the first miracle childen to return to Dallas, healthier because of having had Omegaven; he will just return having survived surgery due to a wonderful mother of great faith and strength who fought to get the best care for her son, a great number of caring people praying, a great transplant team, staff doctors, nurses, and a Doctor, named Puder.

Thank you, Dr. Puder

Omegaven Saves Lives! In Kalamazoo, too!!

Short gut, or otherwise, for the most fragile among us, babies who cannot get nutrition orally, Omegaven has prevented, healed or at the very least halted liver damage due to Total Parenteral Nutrition. Count my son among the many who otherwise would have perished before turning one. Although he will remain on TPN for the rest of his life, he actually as a remaining life to consider.

Please note that Omegaven is nothing more and nothing less than ultra-sterile fish oil. This is not a drug in the formal sense that there are no fancy additives, no additional processing, no "weird" ingredients. If fish oil administered intravenously can cause heart deterioration, then that cardiac patient has a lot more problems than just a short gut.

Literature reference here

http://pediatrics.aappublications.org/cgi/content/abstract/121/3/e678

Kalamazoo family; try and appeal Medicare with these references here

http://grey.colorado.edu/shortgut/index.php/Insurance#Insurance_Coverage_for_Omegaven

and here

http://www.articles.complexchild.com/00012.html

or contact me directly and maybe I can help?

Who can help cover the cost for Omegaven

Our grand daughter was born pre-mature and has been in the hospital (Kalamazoo, MI) for the past 8 month. She has been given OMEGVEN for the past few weeks. She takes the medication for her high bilirubin (jaundice level) due to being on TPN for an extended amount of time. If she didn't have this medicine a little further down the road she would require getting a liver transplant. Unfortunate, the insurance (Medicare) will not pay for it and therefore the Hospital is paying the bill, so they say. They told the parents (our Son and his girlfriend) that as long as she stays in the hospital, they would pay for the medication. Ahnnaliyah is other wise ready to go home but if they take her home the hospital won’t pay for the medication. They were told that she needs it for 2 more months and suggest that she stays in the hospital for the remaining time because of the high cost for the medication. We are searching for a way to receive help in regards to the cost for this medication so they can take the baby home.

Please help us with our request and help us bring Anna home where she belongs.

Omegaven, better option than DEATH from TPN induced liver failure!!!!!

See prior post. Ooops I'm Michelle from PA not NY

Omegaven, better option than DEATH from TPN induced liver failure!!!!!

This is a great article & I wish everyone with a "short gut" child could read it! My daughter was one of the "failed" Omegaven babies. My daughter received Omegaven in Boston for 5 weeks before she received her "gift of life", a multivisceral transplant. She did not respond to Omegaven as we had hoped because she had "shock"liver after a severe GI bleed. Her bilirubin went from 21 to 54! However, if we had known about Omegaven sooner I believe it could have saved her liver! The reason she had the severe bleed was because her liver was failing in the 1st place. She was bleeding to death before our eyes & only survived because of multiple quick blood products being slammed into her. Why did she have liver failure? BECAUSE of TPN that she needed to keep her alive because she had short gut syndrome. Dr. Puder is not so far off to say that "these patients are being sent to their deaths" There are 100's of babies out there dying from TPN induced liver failure that don't need to be! Our doctors told us she would not survive when she was born and had 7 cm of small bowel left. Why? Because TPN, the only way to give her nutrition, WOULD cause liver failure & she would not live to be big enough or old enough to get a small bowel transplant! We were seeing her liver fail before our eyes- the more & more YELLOW she got! What parent in their right mind would not attempt to save their child with Omegaven, even if it is still experimental, there are plenty of success stories to see. Would you RISK some UNKNOWN side effect that has not been seen in over 2 years in Omegaven kids, rather then see your child DIE a horrible death of liver failure! I was going to risk it! The problem was the TPN had already done irreparable damage. And if there is some side effect not seen yet? - Then I would rather risk my child die of an unknown side effect; say a quick "heart attack" then a FOR SURE slow horrible death of liver failure. Have you ever seen your child bleeding to death because of TPN induced liver failure? "Mr." or "Mrs." or "Dr." CA?! Just because you didn't find Omegaven first! I think the numbers speak for themselves & that there are a lot of other medications that have known bad side effects & are still being prescribed. Why? because that is the best option. I would say that Omegaven sure is a better option than DEATH from liver failure. Wouldn't you? I believe other Drs. should stop being irresponsible and offer their patients a better option than death by TPN induced liver failure! I believe Dr. Puder IS responsibly caring for his patients with a heart of gold! Why would he hide something that has had so much success?!! As for my daughter, she has survived by God's grace, by Dr Puder caring enough to help, & by the hands of an extremely talented surgeon & a wonderfully attentive transplant team in Boston! She is still having plenty of complications that go along with transplant, but there is hope for better years to come!

Omegaven, better option than DEATH from TPN induced liver failure!!!!!

This is a great article & I wish everyone with a "short gut" child could read it! My daughter was one of the "failed" Omegaven babies. My daughter received Omegaven in Boston for 5 weeks before she received her "gift of life", a multivisceral transplant. She did not respond to Omegaven as we had hoped because she had "shock"liver after a severe GI bleed. Her bilirubin went from 21 to 54! However, if we had known about Omegaven sooner I believe it could have saved her liver! The reason she had the severe bleed was because her liver was failing in the 1st place. She was bleeding to death before our eyes & only survived because of multiple quick blood products being slammed into her. Why did she have liver failure? BECAUSE of TPN that she needed to keep her alive because she had short gut syndrome. Dr. Puder is not so far off to say that "these patients are being sent to their deaths" There are 100's of babies out there dying from TPN induced liver failure that don't need to be! Our doctors told us she would not survive when she was born and had 7 cm of small bowel left. Why? Because TPN, the only way to give her nutrition, WOULD cause liver failure & she would not live to be big enough or old enough to get a small bowel transplant! We were seeing her liver fail before our eyes- the more & more YELLOW she got! What parent in their right mind would not attempt to save their child with Omegaven, even if it is still experimental, there are plenty of success stories to see. Would you RISK some UNKNOWN side effect that has not been seen in over 2 years in Omegaven kids, rather then see your child DIE a horrible death of liver failure! I was going to risk it! The problem was the TPN had already done irreparable damage. And if there is some side effect not seen yet? - Then I would rather risk my child die of an unknown side effect; say a quick "heart attack" then a FOR SURE slow horrible death of liver failure. Have you ever seen your child bleeding to death because of TPN induced liver failure? "Mr." or "Mrs." or "Dr." CA?! Just because you didn't find Omegaven first! I think the numbers speak for themselves & that there are a lot of other medications that have known bad side effects & are still being prescribed. Why? because that is the best option. I would say that Omegaven sure is a better option than DEATH from liver failure. Wouldn't you? I believe other Drs. should stop being irresponsible and offer their patients a better option than death by TPN induced liver failure! I believe Dr. Puder IS responsibly caring for his patients with a heart of gold! Why would he hide something that has had so much success?!! As for my daughter, she has survived by God's grace, by Dr Puder caring enough to help, & by the hands of an extremely talented surgeon & a wonderfully attentive transplant team in Boston! She is still having plenty of complications that go along with transplant, but there is hope for better years to come!

My son, Carter

Thank you for your story about Scarlett. There are so many children who have a new chance at life because of Dr. Puder and Gura. My son is #78 and we came to Boston from Dallas just for Omegaven. My son was "being sent to his death" before we met Dr. Puder. Unfortunately, after 9 months on TPN & Lipids, his damage was too severe to prevent a transplant. Carter was blessed to be on Omegaven for 5 weeks before his transplant and I can say without a doubt if it were not for Omegaven, I do not believe he would have been strong enough to survive the operation. Yes, Omegaven is new and just like any new therapy, it will take time to prove the results are real. But for parents like us who weren't given the option of time, I never once hesitated about giving my son Omegaven. I encourage every parent to research and make the best decision for their child, for us Omegaven was the best decision we ever made. My only regret is that we didn't get Carter here sooner to avoid transplant. Even if we begin to see complications from Omegaven 10 years from now, that is 10 years many of us would have never had with our children if it were not for Dr. Puder and Omegaven.

Great story/ short gut Wiki

Thank you for this great story, there are so many just like it out there, but is nice to see our fight to save our children's lives be recognized.

Omegaven is an amazing product, and those that doubt it's effectiveness are just ignoring all the children it has saved. It is great but it is not a miracle worker and some children's livers were beyond repair or the children too sick by the time they were able to get on Omegaven. Two children have had to have transplants even though they were on Omegaven but, many more have been able to come off of the transplant list because of Omegaven.

Thank you for spreading the good work of Dr. Puder and of Omegaven. It was also nice to see the short gut WIKI mentioned, as it is a great tool for those with short gut and/or their parents.

Interesting

Thanks for sharing this story.