My son started Deflazacort 1 1/2 weeks ago after visiting Dr. Wong back in April for the first time. Due to various reasons it took us several months before we were able to begin, but it also gave me time to prepare and educate myself further in making sure we were off to the right start with regard to his nutrition.
One of my many concerns about starting steroids was the possibility of weight gain. Not merely for the superficial reasons but because excess weight gain equates to even more strain on our boys delicate muscles.
When we visited CCHMC, we met with a nutritionist that gave us guidelines on making the right choices when it comes to nutrition. Thankfully, Avery already had a very healthy diet, so I've only had to modify a few things here and there, but I'm still finding it challenge. In addition to maintaining a low sodium diet, she advised that he should be drinking 52+oz of fluid a day.
Since we are just starting steroids, I would really love to hear from other parents and find out how successful you have been with maintaining a low sodium diet and pushing the extra fluids. I know that there have been other discussions started about suggestions for meals, etc. but they seem to die out after a few people post and I think that this is something that is so important when making the choice to use steroids. I think what I would like to see out of this discussion is for all of us to motivate each other to make the right nutritional choices for our boys and share ideas with each other so that we can all achieve more success with their diets.