National Institute of Health Day 2

January 8, 2015

Snow at the National Institute of Health

Liver/GI: it was great to get yet another insight into Patrick's portal hypertension. This doctor reviewed Patrick's reports and was surprised the varices from the first banding were so large for a child...and was a bleeder.  He felt the second bandings were a result of the first surgery because of the placement. They were presenting his case to the team of doctors and researchers. They want to review liver biopsy and possibly repeat. They know the clot is blocking the whole vein and need to get to the root of the problem (can I get an Amen)! He doesn't buy that we may never know and wants us to focus our attention on the liver even though the PH is a vascular issue. He wants to be sure the liver is an innocent bystander...try to resolve any of those issues before the liver becomes damaged. The Rex shunt (Chicago surgery) is a definite option but need to go down the road of how Patrick's varices will develop. The Rex shunt is very risky and although a cure not reversible. 
Hematology: had not planned on seeing them but the group wanted further evaluation and consult to begin treatment plan. She is urging that we work full panels for other clotting disorders...this will be done through Greenville. One treatment they wanted to consider was a blood thinner to help fevers/strokes...she would urge against it as his conditions are complicated. If he did this treatment it would put him at risk if he would have bleeding varices. 
They all said that Patrick is anomaly.
So plan..13 vials, urine specimen were taken for evaluation to get a control established. DNA tests being run with a year to review. Visit back in summer. Liver doctors will get back with us after meeting. Clotting disorders being run on Monday. 
Long week..hopefully some movement...

same place, different day