Caleigh is one of the lucky patients who are diagnosed with EE simply because she will drink her formula.  Many children won’t drink the formula so they have to have a feeding tube inserted in their nose and that is how they get their nutrition. Many children with this disease never get any foods to eat at all. One of the problems that we, and other parents, have encountered is that there is just not enough research done about EE.  The doctors just don’t know enough about it.  There is not much research on how this starts, how long it lasts, what medicines can help, and other questions that research will answer.  For more information about EE, Please log on to www.apfed.org