We have just ordered Deflazacort for our two boys. Before it gets here I am trying to find some information about what their diet should be. What things should they stay away from? My children are pretty healthy eaters but sometimes there are things we think are healthy and when we actually look at labels we discover they are not. I read something about a low sodium diet. What should the daily intake of sodium be? If anyone has some information about this please let me know!

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Comment by Susana Arroyo on February 25, 2009 at 11:08pm
These are all some great Ideas.
Thanks for posting all these up.
I will use some of these tips to maybe reduce some of the water rentention due to the Prednisone.
Comment by Lisa Tepper on February 10, 2009 at 9:36am
I usually aim for around 1100 mg per day but some days it creeps up to around 1500mg. Fortunately, he likes fruit which doesn't have any sodium so it is always a great snack. We also eat lots of whole grains. I pack Brad's lunch for school every day. I met with the nutrionist at our school system and she allowed me to review all of their menus and recipes. They were great on fat and calories but VERY high in salt because they use a lot of processed foods and regular chicken broth in many recipes. The BBQ chicken was much higher in sodium than the french fries. We also try to limit eating at restaurants to once per week. He can order what he wants (usually a cheeseburger) but with a healthy side item like fruit. Then we give him a few fries from his brother's plate. We started Deflazacort in October and Brad has actually lost about 2 pounds because he is so much more active now. I think the low sodium bothers me and my husband more than him. We just put hot sauce on everything now. LOL. But it is healthier for us too so that's a bonus. A couple of items that surprised me when I was first checking labels were cheese and bread. I know the calcium is good for him but cheese is an item we don't offer him very often for a snack. I have found that Pepperidge farms has some whole wheat bread that is also lower in sodium.

Lisa
Comment by jenn on February 7, 2009 at 9:45pm
we have our sons on a very low sodium diet, i aim for 1000mg per day,( we dont count fruit and veggies, just added salt...) that was recomended at cinci hospital. it has helped my oldest lose the puffy face he had gotten from years on steroids. we also use small portions, and lots of water. he is always hungry due to steroids, so we buy lots of veggies and fruit for snacks, extra calcium is also important. both of our boys are maintaining a healthy weight, and moving around quite well...
Comment by Darcy Tumminello on February 7, 2009 at 7:11am
If I recall, no more than 2000 - 3000 sodium a day

Darcy
Comment by Darcy Tumminello on February 7, 2009 at 7:07am
My son gained 8 lbs the first year. I was watching the sodium on evertyhing...but not the fat, caloties. etc. We were told he could not gain any weight the next year...and it's almost a year and he has probably only gained 2 lbs..but has also grown 2 inches...Whole grain breads, low sodium, fruits, veggies, tuna...and of course once and a while...all the good stuff..pizza, cake..My son is always hungry ..between meals he only gets fruists or veggies..

Darcy
Christians Mom
Comment by Paul Johnson on February 6, 2009 at 4:25pm
Hello Shannon,
I don't know if there are any outlines for diets as such. I would recommend that you talk with the nutritionist at the Hospital where your sons are seen. In our case we do't have a specified rule - and if you look around on the web even for healthy adults you'll see differnt Recommended Daily Allowances for sodium. So we went with just reducing the sodium wherever possible - and we aren't crazy insane about it. I try to make sure I don't buy anything that is more than 300MG per serving as a guideline and will always try to find lesser if possible, but these are just my rules I've made for myself. And I DEFINITELY try to reduce\eliminate the sodium from things that are ingredients in dishes I make (like stewed tomatoes, canned vegs etc...), because when you put several ingredients together the sodium ramps up quick. There are more and more low sodium\reduced sodium\no salt added items out there. But also beware - something that is labeled as Reduced Sodium does not mean Low Sodium. For instance I've seen soup labelled as 45% lower sodium - yet I could find another failry equivalent soup with no claims of low sodium on the labl,l but it had a lower sodium\serving value. So it takes a little longer on the first several shopping trips as you work through all those labels, but then you learn the brands\items that will work and it gets faster\easier.
Also - in the same example with the soup. 1 can of soup is usually labelled as 2 servings - so keep that in mind when figuring out the sodium levels.
There were some other notes out here in this group:
http://community.parentprojectmd.org/group/dmdrecipeideas/forum/topics/1187424:Topic:11637.
We make sure the boys eat plenty of fruit when possible - vegetables are always a challenge - but they are offered every meal and they need to at least have some (and its getting easier to get them to eat them).
The biggest problem for me was getting rid of those quick convenience items like those prepackage Noodle Side mixes and such - but I've found "Make Your Own Mix" type recipes on the web where I just omit the salt and use low salt bouillons etc... and I can still have those quick side dishes within arms reach when I need something and I have no idea what to make!
I think the key is to just make healthy choices... so if your kids are healthy eaters already, I think the only thing would be to reduce sodium where it isn't needed. I've even come to *prefer* the no-salt chips (still need salt on my pretzels though...)

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