In all the research I have done the Rex Shunt appears to be the only procedure to 'cure' or give Patrick the best chance of having a normal childhood...eliminate the EGD procedures. Granted, the risks are very high, but when do those risks outweigh the chance to have the best quality of life.
The leading doctor, of this type of surgery is at the Lurie Children's Hospital in Chicago, IL. I decided to email him....it was one of those grasping at strings times when I felt like I had no other road to take...not really knowing where this one would lead or if we could even go this route. Within 45 minutes on October 6, 2014 I had a reply:
Dear Mrs. Daniel,
Please do not apologize for e mailing me. You are just trying to help your son.
In the last 15 years, we have treated almost 200 children here with portal vein thrombosis. Many kids are brought here from other states and other countries.
Your son has a typical history, and physicians from other centers often are unaware of the Rex shunt, or are not sure how or when it should be done.
We would be happy to evaluate him for a Rex shunt. If you call my administrative assistant, he can make the necessary arrangements and get all the necessary information.
It sounds like you already may have made contact with some of our past patients, but we could help you communicate with designated parental representatives who could give you a parents' perspective on the program. We have, I am sure, seen kids from South Carolina, Georgia, Alabama and Florida in the recent past who may be geographically near you.
What I would need from you is CD's containing the MRI and a summary of his medical history.
You could also visit our website to find out more information.
https://www.luriechildrens.org/en-us/care-services/specialties-services/liver-transplants/portal-hypertension-program/Pages/index.aspx
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