What's Wrong with Conventional Weaning Strategies in the U.S.?
Imagine drinking a 24-ounce thick, rich chocolate shake. Now, do you want to eat a big, juicy steak? Or imagine that you have just eaten a big juicy steak, potatoes and salad and you are stuffed. I bring out a large slice of cheesecake. Would you want to eat it? You might take a few bites, but you wouldn't want much. That's how are kiddos feel when they are being tube fed, and we wonder why they won't eat!
There is a better way. Hunger-based weaning.
What is Hunger-Based Weaning?
Hunger-based weaning encompasses several types of weaning plans, the most drastic of which comes from the Graz clinic in Austria, where they successfully wean 92% of their patients within 3 weeks. ( www.notube.com )
In this approach, feeds are reduced over a 5 day period to nothing and the child is offered meals 6-8 times a day. This method, while successful is the most controversial and the hardest emotionally for all involved. You really must have support from your medical team to employ this method and it should be expected that the your kiddo will lose some weight--up to 10% is allowable.
Heath's wean is good example of this type of wean and how you can do it too!
A less drastic (and slower approach) is to use cycles of feeding and not feeding. During the first cycle, which lasts 2-3 days, you drastically reduce the tube feed volume, 50-100%, giving as much time between feeds as possible. At the end of the 2-3 days, the average daily volume is calculated.
During the second cycle, which lasts about 5 days, the child is fed her normal volume minus the average daily volume from cycle 1. You continue alternating cycles until the child is able to consume the minimum amount needed for hydration. Then, you cut out the tube feeds altogether, supplementing with the tube only on days when he consumes less than that minimum.
An even less intensive approach is to reduce the feeds by 20-30% for the day, holding it at this level until the child is making up 15-25% of the missing volume orally. Then lower the tube feeding amount by another 10-20%, and continuing on until the child is eating about 50% of their calories orally, at which point all tube feeds are dropped. This approach has worked well for many people, but others find that the "small" drop in volume is not enough to spur their child to eat.
Why does Hunger=based Weaning Work?
Where Can I Get More Information?
On the Graz clinic's website, you can learn more about tube dependence and the hunger-based weaning process, and connect with professionals who can help you with the wean either in their inpatient clinic or via net-coaching.
This blog contains links to several helpful websites and PDF files about tube weaning and describes how a rapid wean worked for Heath.
Connect with other parents who are hoping to, in the process of, and have already helped their children wean off their tubes on this online forum. It's a great place to ask questions or look up the answers to your questions about al things tube feeding and weaning.