Can you all give me an i.e. of what you give your kids to eat? I will start

1 piece low salt whole wheat toast
1 tsp. no sugar jelly
1/2 fruit - sliced apples, grapes or oranges
1/2 c. juice with balance = water and protandim
two calcium chews with deflazacort in them
multi vitamin

Snack at school
1/3 c juice
1/2 graham cracker
1/3 piece of fruit

1/2 peanut butter (no salt type) with no sugar jelly on 1 piece whole wheat - lo salt bread
3 apple slices
1 small yogurt
1 6 oz. water

snack in afternoon
water 1/3c with juice

1/2 bean/burrito - 120 cal
1 Quron chicken nugget (it's veggie type)
apples slices and carrot slices
1 c 1% milk - if he wants it, another 1/2 c milk
apple sauce - no sugar for desert, popcicle or 1 low fat cookie.

Nothing from that point on. Fig. about 1300-1400 cal per day and about 1200 sodium. Trying to get both cals and sodium down.
We have noticed increase in puffy face and weight gain. What can you suggest to stop this?
Char - Will age 6

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Replies to This Discussion

char, we have two boys with duchenne, ages 10 and 7. our oldest was very active until he became less able to walk, but he swims everyday year round which helps him to exercise. he has struggled with weight since he stopped moving as much and i have found that i have had to adjust his already low fat low salt diet.the puffy face will probably happen a little over the years no matter what, but if you cut his sodium even lower, it will be less puffy. we are looking into human growth hormone as we have heard that among other benefits it helps with the puffy face. here is a typical daily diest for our boys, (i dont measure veggies at all..).

breakfast: one egg scrambled ( or boiled) 1/2 cup berries (antioxidents help remove garbage from your system ) water

snack: carrots, sugar snap peas, cucumber slices, water

lunch: chicken wrap ( i boil the chicken or buy low salt, low fat turkey in a pinch)
unsalted tortilla chips, cantalope slice, water

snack: rice cake, red peppers, mozzerella cheese ( natural has no salt)

dinner: salmon, baked, brown rice, kale

snack, fruit or veggie of choice or yogurt

of course, we deviate during holidays or trips, we eat junk like everyone else, but the boys know it is junk and really prefer this type of food. char, the only suggestion i have based on your menu is that maybe there is a bit much sugar, the fruit, juice and also no sugar jelly all has natural sugar.also the veggie nuggets used to be a favorite of our boys, untill we looked at the salt, yikes, almost anything processed has been removed from our grocery list. we allow veggies as snacks, before meals, so, often the boys are full and dont eat much other stuff. i would love to talk more about food, i believe that it is an important part of caring for boys with dmd.
Well, it really didn't matter with my son how low cal, low sodium, low carb(sugar) he ate he still got really puffy and chunky. I tried everything. But we mostly do high protein, low sugar, lots of fruits and veggies. No fruit juice, very high in sugar. But he drinks tons of skim milk and water.......his favorites.

Misty B


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