My kids are all underweight and we saw a nutritionist early on. what type of ichthyosis do you have? Netherton's and Harlequin are especially prone to being underweight, but any type uses lots of energy on skin growth or temperature management or both. Some of the more severe types use a feeding tube at night in order to get adequate nutrition. For us, we are fine with just adding extra calories to a regular diet. Whole milk, butter, pastas with extra cheese, peanut butter, etc.
You sound very severely underweight and in need of a doctor's monitoring. You might have a metabolic problem aside from ichthyosis, such as an overactive thyroid. At the very least, you should see a nutritionist. But definitely start adding extra calories to your diet until you get an appointment.
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.
email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"