This document supplements Feeding Tube by Jean Miller.
1. The tube should be flushed daily. Although water is good, coke or other carbonated beverages are even better.
2. The feeding tube does not last a life time. I was not told they have a life span of about 6 months and so it is important to understand they may have to have it pulled out and a new one inserted. If there is substantial drainage but flushing can be easily done, there is a good possibility a replacement tube is needed.
3. People with feeding tubes can still eat orally if they desire and are able to. When the tube was first placed, Dave felt like he wanted to eat exactly as we do up until he died. We believe that is his choice. As a result there was quite a bit of choking and but again, he would rather be *normal* and choke to death than give up food. However 9 months after the insertion of the tube, Dave decided he simply could not eat or drink any more. The ability to swallow had deteriorated to the point where even tasting the food was not enjoyable. He is now 100% on the tube.
4. One way of getting nutrition is through putting regular table food into the blender. Because of the special nutritional and caloric needs of a person with HD, it seems the cost of blending foods is not an affordable option. Commercial products like Ensure and Boost are another way to feed a patient but not the best long term solution. They are also quite expensive. While you are using readily available commercial products, you might ask church groups, friends, families etc. to clip coupons. Also, contact stores in the area and ask if they will sell you an ongoing supply at cost plus 10%. All they can say is no.
5. Write directly to the manufacturers and ask them if they would be willing to donate some and or send some $1.00 off coupons for the product.
6. Check with the area hospitals. Often cans are discarded before the expiration date (maybe a week or so). The product is good for even longer than the date that is simply the best when used by date. Often they will give it to you at no cost if you come and get it.
7. It is important to understand that nutrition is a very critical to the continued well being of the Huntington's patient. Because of the need to make commercial brands of food supplements taste good to the public, they are high in fat and sugar content. Over a prolonged period of time excessive fat and sugar are not good for the human body. Having a fast food hamburger ever so often probably is ok. Having a steady diet of that and that alone is not conducive to good health. If the HD person is getting the bulk or all of his or her nutrition from supplements, it is suggested that you work with a dietitian to find a high content formula. The best formula is likely one that is not commercially available through retail outlets.
8. Another factor in successful feeding is to regulate the amount and rate of food going directly into the stomach. The slower the rate of intake the better the tolerance usually. Feeding by hand with a syringe makes the rate faster. Using a feeding pump to control the rate is normally better for digestion and causes less problems.
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Last updated: Dec. 7, 2010