My brother was diagnosed with WD late last summer. In March of this year he took a drastic slide down hill in health. At this time he is no longer able to walk, talk, swallow, etc. He has been in and out of the hospital many times since the end of March.
Since he is no longer able to swallow he had to have a PEG tube placed so that we could feed him. From the end of March till now he has lost 100 pounds and weighs only 113 pounds. The medical staff we have available to us has never seen a case of WD and therefore, are not highly educated in treating this horrid disease. It seems that we (my brother's family) are better educating ourselves and in turn educating the doctors. Anyway, I talked to Dr. Brewer at Univ of Michigan yesterday and, as I guessed, my brother is not getting enough calories thru is tube feedings. We have found a great diet for him and the total recipe we use has plenty of calories and meets all of his nutritional needs the complicating factor is that my brother can't tolerate us feeding him the whole recipe in one day. Therefore, he is not getting the nutrion that he needs and is starving.
Therefore, I am posting this journal to see if anyone knows of any feeding recipes or methods that aren't so much liquid but yet still liquid enough to feed thru a tube that might meet the nutrional requirements my brother would need. Dr. Brewer said that my brother should be consuming at least 2000 calories per day. Dr. Brewer also said that for the time being, until we can get some weight on my brother that we should not focus on the copper content of the food as much but more the calories, vitamins, etc. He said that since my brother's copper level is good now and that since he is taking the proper medications to prevent copper absorption to focus on getting his weight up.
We have tried to increase the volume of the tube feedings but my brother seems to aspirate with volume increase. We seem to be able to feed him only about 250-275mls every 4 hours. If anyone reads this message and has any advice PLEASE let me know.
Thank you to everyone and please keep our family in your thoughts and prayers.
Amy K of KS
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Severe WD/Feeding Tube Diet
- By AmyKofKS
- Posted August 5, 2009 at 12:47 pm · 3 replies
- Shared with the public
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