There might be some controversy about this approach, but I think whatever works for them to get their appetite back and eating real food is worth a try. For my husband, it was a lot of Ben & Jerry’s ice cream. I also made him ice cream, and if he needed extra nutrition I added an Ensure type product to it.
He quickly transitioned from an NG tube and immediately started to gain weight from eating real food. Initially I puréed, but as time went on that became not necessary. I did not go with off-the-shelf thickening agents, because he did not like the taste and I don’t think they are really necessary.
For sweet food you can add gelatin and for savory food you can add corn starch arrow root. For soup/stew like meals I would throw in some potato that I cooked the crap out of, and that worked well too. I also think it helped that he could smell me cooking food to whet his appetitie.
There are other natural alternatives, which are less “gluey” than starch thickeners and some are nutritious with healing properties. I did not try any of them, because I was not aware of them at the time, and luckily, thickeners were not needed for long.
- Carrageenans (or Carrageenins): gelatinous extracts from red seaweeds (Chondrus crispus)
- Locust bean gum: from Ceratonia siliqua plant
- Agar (or Agar agar): made from red algae of genus Gelidium & Gracilaria, or seaweed Sphaerococcus euchema
- Guar gum herbal powder
- Aloe vera gel: nutritious if not heated (used for cold food mixtures)
We were not provided with any information, so I had to pretty much wing it. In some ways that was okay, because I just went with what I would want in that situation, and I think to stimulate the desire to eat is the most important thing. My husband looked like a holocaust victim, but within a few weeks showed a huge improvement.
There are many people who also make their own blenderized food for people using a PEG. You may want to start with that to transition from formula so they get his appetite back. Here are some links http://www.foodfortubies.org/ http://www.drinkyourmeals.com/
Probably you already have this information, but here is a link for Level 1 Dysphagia Pureed
and Level 2 Dysphagia Mechanically Altered. There are more recent versions available, I just can’t find them right now.
