Lorenzo's Oil Diet / Support
Hi everyone, my name is Jessica, and my 2 year old son was diagnosed with adrenoleukodystrophy on his first birthday. He also has another genetic disease called isovaleric acidemia, which basically means his body can't break down protein correctly. So far he is symptom free and developing wonderfully, but I am nervous about the future. He's been on the Lorenzo's Oil treatment since June and it seems to be doing the job, his VLCFA levels in June were 1.64 and September's monthly blood test shows the levels dropped to .046. My question is for any other parents who's children are on the Lorenso's Oil treatment: because of the other disease and the LO intake, my son is only allowed 6 grams of fat a day, which many of you know is virtually nothing. He can have 22 grams of protein a day, which rules out meats and most dairy and eggs, unless those can be used sparingly. Can anyone give me some tips or tricks they have come across to help me come up with some new recipes for a toddler? Another ALD parent told me that she uses white cake mix and a can of soda to make cakes for her son instead of using the eggs and oil. Any ideas or new info anyone may have on any part of the LO/Adrenoleukodystrophy would be greatly appreciated! Thank you!
Posted By: jnocmd
Posted On: Sep 27, 2008 3:07 pm
|
| Replies |
| |
Re: Lorenzo's Oil Diet / Support
My 4-year-old great nephew was recently diagnosed with ALD and Addison's Disease so we are working on modifying recipes for him. He does not have the additional issue of protein intake that is as limited as your son's. I found a site "Living Cookbook" that allows you to enter recipes and then modify them to get grams of fat and protein to where you need them to be. While there is a $34.95 purchase price, they have a 30-day free trial. I'm still in the trial period and loving this resource. The main thing I'm doing to date is substituting applesauce for oil. I'll be keeping an eye out for vegetarian menus... I'm sorry I don't have much help now, but I will be working on this.
Posted By: Aunt Lavonne
Posted On: Oct 21, 2008 4:08 pm
|
Join 
Login 
Search 
