I am wondering what the typical diet for DMD boy who is on steroids looks like. My son is struggling with weight gain and I am interested in ideas to stem further gain. Exercise is hard b/c of the DMD - by the end of the day - he'd tired....just when I get home!! Thanks Char

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We're dealing with the same thing. Started steroids in January, and my son has gained around 10 pounds since then.

We'd been making zero effort at controlling weight up until now. We were mostly focused on including more Vitamin D and calcium. Now we're focusing on calories as well.

The easy ones to change for us are breakfast cereal, soda, and dessert. Our kids were eating your usual kids cereals, which are loaded with sugar and calories. They don't drink a lot of soda, but when they do, they always had regular soda. You can go to a diet root beer, and it tastes almost the same. Colas take a little getting used to, but it saves 150 calories each. Juices can be just as bad. Some of the flavored waters aren't bad, and the kids are a little more enthused about them than just plain water. The last is dessert. My wife's a big ice cream fan - our kids have consumed more ice cream in the last 10 years than I have in the last 40. We've cut that way back and substituted a yogurt, which we spice up with fresh fruit and a little crunchy cereal or nuts. Seems to go over well.

Also, in general, protein and whole grains are your friends for weight control. Yogurt, peanut butter, almonds, etc....
We had a hard time the first year and Dr. Wong was not happy. We had to maintain his weight for a year the seond year and just had our visit and she was very happy. The first year I just focused on sodium and nothing else. This past year I focused on sodium, calories, sugars...eat whole grains, fruits, vegies, cheese, egg beaters, fish, tuna, pasta, applesauce, chicken, rice...I let him eat as much as he wants between meals. but it has to be a fruit or vege. He got sick about a year ago and his appetite seemed to decrease a little since then. He also eats whole grain pancakes, turkey sandwiches for lunch at school, fruit cups,,,,,of course when theres a party and opportunity for pizza and ice cream, he's allowed.

Hi Char,

A low sodium diet is what I have really focused on since Avery started Deflazacort last August. Dr. Wong and the nutritionist that we met with emphasized the importance of both a low sodium diet and increased fluid intake. I read the labels on EVERYTHING. It takes a lot of effort in the beginning, but I have to say that I think so far it has really paid off......and at our last visit in April, we were actually told by the nutritionist that I could increase his sodium intake because he hadn't gained any weight in almost a year.

I focus on making sure that he eats a lot of fruits and vegetables. I buy low sodium deli meat (turkey and roast beef have to lowest sodium content...and I limit him to 2 oz per sandwich.) I also buy low sodium bread, tomato sauces and ketchup. If I allow him a fairly high sodium content meal, I compensate for it the rest of the day with low sodium options. I also make sure that he drinks at least 12-16 oz of fluid in the morning with his deflaz and push water and milk during the day. I limit fruit juice to 4-6 oz day. Our goal is 52+ oz a day but at 40" and 34lbs, it's hard to get him to drink that much.

Here is a realistic example of what he may eat in a day:

6 oz lowfat yogurt
1/2 cup blueberries
Drink (1 cup of water or a 12 oz bottle of Kid's Fuel (flavored water drink I try to get him to drink every morning with his deflazacort after breakfast)

Morning Snack
1 cereal bar (Nutrigrain or Quaker....both under 100 mg of sodium)
4-6 oz 1% milk

1/2 low sodium turkey sandwich w/ 1 slice swiss cheese (sometimes a whole one with 2 slices) with whole wheat or multigrain bread. (Sometimes low sodium....if I don't buy low sodium bread I try to aim to find a brand that has less than 135 mg sodium per slice) Swiss cheese has the lowest sodium out of all cheeses. Sometimes I replace the swiss cheese with 1 tablespoon of cream cheese (even less sodium than swiss)
1 cup of grapes
1 handful of low sodium Wheat Thins or something comparable
4-6 oz milk

Afternoon Snack
1 cup strawberries
1 string cheese (I aim to find one under 170mg sodium per serving)
4-6 oz low sugar juice box

Whole wheat pasta with low sodium marinara or homemade marinara (using "no salt: added tomato paste)
Homemade ground turkey meatballs
1 cup steamed broccoli
6-8 oz lowfat milk

(Suppliments, vitamin D3, COQ10, etc.)

Lowfat vanilla frozen yogurt or sherbet
4 oz water

I do allow him treats from time to time because I feel like he really needs to just enjoy them and don't limit him when it comes to parties, but because I've been so strict with enforcing the diet, he really has learned to limit himself and make healthy choices on his own.
Just to let you know, if he likes peanut butter, Jif makes one called Simply Jif. It is low in sodium and sugar. Still has 16gr of fat but so does the regular peanut butter.

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