Comments on: Esophageal Varices

By: Clint

Clint — Tue, 10 Jan 2012 19:27:17 +0000

Hi Dawn,

Thanks for posting! Always sorry to hear of kids who are dealing with PVT, and your son’s bleeding is most disconcerting. Dr. Acton is a trusted doctor in the field of Portal Hypertension for Children, and I am glad you are able to be under his care. Thank you for your prayers for all of the people in need that visit this site. Besides assuring them and giving them a forum to discuss the issue with others, the very least we can do is to pray. I hate to give anyone a PAT answer, but what I believe to be true is that we are all under God’s watchful care, and nothing escapes his view – we simply just need to trust Him. May you be surrounded with His peace today and may your son experience the healing touch of God in his body!

Kindest regards,

Clint

PS I would be happy to put you in touch with other parents who have gone through this with their own child – just let me know and I will email the information to you.

By: Dawn

Dawn — Tue, 10 Jan 2012 18:39:12 +0000

We are currently at U of Minnesota uder care of Dr Acton. My son is age 12. He was diagnosed with Portal Hyper Tension at age 10. He was banded 3 times since Dec 2009, the last time being fall of 2010. He is now bleeding in the stomach, which does not respond to banding. Dr Acton has preliminarily recommended a Rex Shunt. He still needs to do an MRI and ultrasound prior to making an official recommendation. My son is a twin that was born at 35 weeks, so he had an IV in the belly button which is what they presume caused the eventual scar tissue/blockage. He has no other known medical issues. We are of course very worried about the surgery and any long term effects. I don’t think there are any other options. I am happy to have found this site. I am thankful to be here at this facility and have a Dr that trained under Dr Superina. Praying for you all.

Dawn

By: Tara

Tara — Sun, 08 Jan 2012 02:00:50 +0000

Clint…… thank you so much for your prayers, that means most to me……. I will certainly look into all the information you provided for me…… your site is extremely resourceful and I want to thank you for all your knowledge as well as writing back so quickly. I will surly update you on my sons progress.
Thank you from the bottom of my heart.
-tara

By: Clint

Clint — Sat, 07 Jan 2012 02:08:08 +0000

Hi Tara,

So sorry to hear of your little guy’s condition – I can only imagine how much stress this is right now.

Dr. Jean Emond at New York Presbyterian Hospital comes highly recommended if you want to try to hook up with him. You may contact him at:

NewYork-Presbyterian Hospital/Columbia
PH Room 14C
622 West 168th St
New York, NY 10032
Phone 212.305.9691
See credentials: http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=je111&DepAffil=Surgery

Also Dr. Superina at Childrens Memorial Hospital in Chicago is gaining notoriety for his success in helping children with Portal Hypertension by performing the Rex Shunt Procedure. See: http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/

Dr.Riccardo Superina
2300 Children’s Plaza
(707 W. Fullerton Ave.)
Chicago, IL 60614-3363
Call 1.800.543.7362 (1.800.KIDS DOC)
Phone 773.880.4000
See credentials here: http://www.childrensmemorial.org/findadoc/bios.aspx?id=993

I hope you get some answers? In the meantime I hope you don’t mind but I will pray for son. Please send an update on his progress and if you have any further questions – I would be only to happy to help.

Take care,

Clint

By: Tara Triolo

Tara Triolo — Fri, 06 Jan 2012 21:59:26 +0000

My family has been doing research for me …. as I have been in the icu with my 3 year old son who was diagnosed with hepatoportal schlerosis and age 1. most recently he had 2 bleeding episodes from esophogeal verisies. Transfusions and Endoscopys were done and the banding procedure as well as schlera therapy. I too want to give my son the best possible care and outcome from this awful disorder. I walk on eggshells with every move he makes…. he is extremly active and although i tell him about his “special belly” he still runs around like a true boy. This past episode of bleeding was his first and I was so scared at the amount of blood my son was vomitting. I noticed chicago childrens hospital mentioned a few times… any insight into how that my help? Currently he is seen by GI specialists out of LIJ in new york and MT. Sinai in NYC. just want to help my boy….. and know that we can somehow manage all this………. thank you for your time. TAra

By: Clint

Clint — Fri, 06 Jan 2012 17:53:19 +0000

Hi Tony,

Thank you for your post and welcome to this blog. As per the email i just sent you, I would welcome your perspective and findings on the benefits of Milk Thistle or other health related products that may benefit fellow sufferers of PVT.

Keep fighting,

Clint

By: dr cambtone

dr cambtone — Fri, 06 Jan 2012 15:53:10 +0000

First, can I wish everyone well. Sadly. as I know because I have cirrhosis, and I am a medical doctor and I have research doctorates, this is not fun. I wish I could live my life again (and how many of us would wish that!).
We have to try to reduce our portal pressure (and propanol is good here). Banding is good, but that needs to be done in clinic.
I also believe in drugs such as milk thistle, and various others. Please email me as a friend, we need to support each other.
Tony Whyte MB PhD (aw352@cam.ac.uk).

By: Clint

Clint — Tue, 13 Dec 2011 22:18:10 +0000

Hi Tony,

Thanks for your comments. Your journey has been a difficult one that is for sure!

In response to not knowing when the next bleed will be, I don’t think any really has a prognosis, but I do know of people who are still living after a bleed of this nature. Although I came close to being transfused with blood back in the later part of 2004 after a bleed in the varices at the top of my stomach, it has been several years since that episode and I am thankful for the life I have had since then. Other people I know who have bleed from esophogeal varices are also doing well after serious bleeds several years ago. I would suspect that you are on thinners and also a beta blocker to slow down your heart rate, so you are getting what would be the standard treatment for post esophogeal bleeds. You said your liver is shot, so that is a dimension that could play into your long range health, but I am not a doctor so I can’t even begin to tell you what to expect for the future, and I am not even sure the doctors would know that? You stated you were on vitamin K2 and milk thistle and I was wondering if that was prescribed by your doctor or what? I was under the impression (and I could be wrong) that Vitamin K2 acts like a thinner of sorts, and I thought that if you were on prescribed thinners such as Warfarin (coumadin) that it may be too much for you system? With Coumadin, most people have to have their blood tested on a regular basis to monitor the I and R levels (see: http://en.wikipedia.org/wiki/Prothrombin_time).

Thanks again for your comments – they are always welcome.

Keep fighting,

Clint

By: tony

tony — Mon, 12 Dec 2011 18:33:31 +0000

I have oesophageal varices and ignored for two weeks that I was vomiting fresh blood and had melena. I awoke one night at about 3:00 am and vomited blood in the bathroom whilst sitting on the toilet and vomited again as soon as I had crawled back to bed. I decided then if I did not call for help, I probably wouldn’t see the morning.
I am never one to ask for help, but I did need it. I was admitted to the ICU that night and had 6 pints of blood and a unit of platelets transfused.
I don’t know how I got myself into such a mess, and it doesn’t really matter as my liver is shot. But no-one will tell me how bad. I talk loads of supplements, including milk thistle and vitamin K2, but I still do not eat well. My ascites has gone but I get strange skin rashes which the doctors can’t explain. These can last months or years, but don’t bother me.
I have 2 grade 1 varices after the rest were banded. This was very successful – although I never saw the rubber bands in the poop!
After my experience I am glad to be alive. They won’t tell me how long for (it is now a year since I was in ICU), but I feel as if I have at least another year. There has been no change on ultrasound or blood tests.
Good luck to all of you.

Tony from Cambridge UK

By: Clint

Clint — Sat, 19 Nov 2011 07:50:12 +0000

Dear Stephanie,

Thank you for your post regarding your son. So saddened to hear of your son’s condition. Please know that besides myself there are others who prescribe to this blog whose children have either gone through or are currently experiencing a difficult journey with their child’s health right now. There are also those who will pray for you and your son – so I hope you take solace in that fact. Please feel free to post an update if you have any questions and I will do my best to answer you if I can, and if not point you in the right direction.

Thoughts and prayers,

Clint