Monday, March 2, 2015

Children's Hospital of Atlanta's alternatives

Email November 21, 2014 
no...the portal hypertension just won't go away; we can't relieve the blockage-it is there to stay-"it is of historical importance;" Patrick's portal hypertension would be classified as 'serious' since he has already had varices and varices with red wales (signs of bleeding); the diarrhea is not associated; had no results about the maltase/sucrose/palitanase (frustrating) so couldn't really know where she was coming from in biopsy-ing this and wants her to follow through with this and then will discuss and create a plan; spleen was enlarged; these surgeries will not reduce the size of his spleen but DO NOT REMOVE.
We discussed the Rex Shunt, Mesa Caval Shunt, and other alternatives.  He does not want to do the shunts right now.  He wants to take the time to see if he will continue having varices.  The risk of the Shunts are very steep and hopes that the banding will continue to improve his 'quality of life.' There are beta blockers that he can give him but never recommends this...he said it takes their childhood away.  They become cloudy.  He emphasized to let Patrick be Patrick...let him be a boy as much as we can but aware of when he needs to be restricted.
We have still sent the records to Chicago in hopes they can evaluate and see if he truly would be a candidate for the surgery.  NIH is also scheduling us to see their liver specialists to follow up.  

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