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.

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HI Lee Ann,

I hope you, Avery & Jordan are doing well. Regarding your topic, we started Prednisone aprox. 8 mos ago and didn't make many changes in Alexander's diet right off. He is naturally very thin and we waited to see if there would be an increase in his weight. There was - but with height gain as well. If you look at Alexander's body it is obvious he doesn't carry a lot of fat. We asked Dr. Flanigan about this at our last visit and he said Alexander quite possibly gained muscle. This is something I found researchers listed in their papers, sometimes boys gain weight but it can actually be muscle mass increasing.

Anyway, we have made minor changes in his diet. I cook as much as possible from scratch, making batches ahead of some things (like pasta sauce) to freeze for later use when I am in a time squeeze. The theory is that anything homemade contains less salt, sugar and bad fats than anything you can get prepackaged, premade or even from restaurants. We don't buy chips anymore, carrots, sunflower seeds, nuts cure the "crunch requirements" for sack lunches. Ice cream is an occasional treat and I stopped baking cookies and brownies weekly. The boys have homemade smoothie, or a banana with chocolate milk after school or just fresh fruit. Getting a small blender (Magic Bullet, sold at Costco's) works well for this. No fizzy-sugary drinks and pizza once in a blue moon. I try to load everyone on vegis - roasting or grilling makes them taste great - ditto for meats.

Actually, I think this method has helped me drop a couple of lbs recently too!
one thing hat has helped us, especially for eating out (we do well at home) is the book Eat this, Not that for Kids. It gives information (calories and sodium) about kids meals at most of our favorite restaraunts and some of them are surprising. You can check it out at

Ang :)
I've spent hours and hours in the grocery store, just cutting sodium. Ouch! I had no idea food had so much, but once you look, you will find lower sodium items just by comparing. You can find lower sodium drinks, tortillas, chips (we buy an organic blue corn taco chip which only has 90 sodium for the entire bag, most chips have 250 per serving), nearly everything. We too cook a lot from scratch, the only way to cut sodium, as if it is natural, it is low in sodium in most cases. Frozen foods are about out and I can't find much on low sodium cheese (which my son loves, he gets 1 mozzeralla stick per day). Packaged meats are out too, they have tons of sodium. So, like Ang said, I've lost a few pounds already. It will help me as well. Anyone know of a good low sodium ranch dressing? My son loves salad and would eat it every day, but most ranch has tons of sodium. Thanks, Michelle
Thank you to those of you who replied. How are all of you doing with pushing fluid intake?
It isn't easy to push fluid and we probably don't enough. He drinks 8 oz for breakfast, 8 oz for lunch, 8 oz after school, another 4oz with powdered supplements, 8 more for dinner, 4 more with Noni Juice, etc. He usually will have 8 more oz. somwhere in here, but it doesn't total the 60 oz he is supposed to do, and it is usually in a Capri Sun or flavored water. He isn't much of a plain water drinker, except during soccer. Michelle
I saw that book and almost bought it. Is it very helpful?

Angela said:
one thing hat has helped us, especially for eating out (we do well at home) is the book Eat this, Not that for Kids. It gives information (calories and sodium) about kids meals at most of our favorite restaraunts and some of them are surprising. You can check it out at

Ang :)

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