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Permalink Reply by Liisa Underwood on May 27, 2008 at 2:01pm

Paul, are both your boys going to start the steroids? I think looking at kidshealth.org may be helpful - just off the top of my head.

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Permalink Reply by Lee Ann Faeth on May 28, 2008 at 1:11am

Hi Paul, we are also going to be starting steroids soon with my 4 year old son and I have been starting to modify some of his meals already. Tonight I made him whole wheat english muffin chicken pizzas that were very easy to make and low in sodium. He also had fun helping me make them which was an added bonus. :)

I always keep a small supply of fresh boneless/skinless chicken breast tenders that I can cook, cut up into small pieces and use in meals for the whole family when we want quick meals. (I use it in salads, etc.) We also always have english muffins on hand.

I used "no salt added" tomato sauce (5mg sodium per serving), low salt shredded cheese and the diced chicken. I put them in the toaster oven for a few minutes, just until the cheese melted. For a side dish I steamed some broccoli and made a quick, healthy, low-salt meal in about 10 minutes.

I have a lot of other easy, yet healthy ideas that I will share later, but it's late and my brain isn't working at full capacity. :)

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Permalink Reply by Paul Johnson on May 28, 2008 at 10:25am

Just Elliott, our 4 year old, at this point. The boys have a stop-codon, so we are delaying putting Henry, 2 yrs, on steroids, hoping that possbily the PTC124 will be available by the time he's 4 or so and he won't have the need for steroids (big wish!!!!)

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Permalink Reply by Paul Johnson on May 28, 2008 at 10:27am

Thanks... any ideas will help. I've been collecting recipes from various healthy living sites - but none seem to be so kid freindly. I'll try the Kidshealth.org that Liisa posted...

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Permalink Reply by Tina on May 28, 2008 at 11:09am

Hi Paul
Both my kids enjoy smoothies. Not sure if your kids are into those types of treats, yet?

Anyway, I found this recipe fast, easy, and to be a good source of calcium.......

Strawberry Smoothies:

1 cup milk ( we use 1 %)
1 cup vanilla yogurt
4 large strawberries ( I always add more)
1 small banana cut up

blend for 1 minute

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Permalink Reply by Paul Johnson on May 28, 2008 at 2:10pm

Interesting Article I found while hunting out some Low-Sodium recipes and ideas:

http://cspinet.org/new/200508171.html

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Permalink Reply by Jerry Dallapè on June 6, 2008 at 12:05pm

If you are already searching for low-sodium recipes, you are on the right path and will do much better at choosing the ones that work for you than I would be. However, I do have a couple of suggestions/comments.

First, a low-sodium diet takes some time getting used to. No matter what you do, the family will notice the difference in how things taste. You get over it, though, and pretty soon the salty, processed foods you used to eat are the ones that start tasting bed.

Secondly, I discovered that adding a bit of garlic can sometimes compensate for the salt. We get unsalted butter these days and Ewan loves to use a browned garlic butter sauce on his pasta instead of the super salty tomato-based sauces. With a good amount of garlic in there, you can't even tell you are using unsalted butter.

Finally, I just read the article that Paul posted above. I can't stress enough looking at labels. You will need to at least double your time in the grocery store in order to do the research necessary to choose the right products. For instance, and I use this example all the time, Wal*Mart has several brands of frozen hamburber patties. One has 25mg of sodium per patty. Another has 350mg!!! The crazy thing is that the packages look nearly identical and give no indication (other than in the nutritional information) of their relative sodium levels. The same can be said for just about every other product out there, so just beware.

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Permalink Reply by irishgirl on June 13, 2008 at 11:06pm

Hello:
Our nearly nine year old son has just been diagnosed with MD. We are planning on starting the steroids soon and were told to wipe out all junk food from the house. Is this because the steriods can add many pounds to your child because they are so hungry most of the time??? I know the added weight is bad for the muscles, but I'm reading your posts of sodium. Is sodium really bad? Should this be totally wiped out of the diet? Why?
Thanks so much

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Permalink Reply by Jill Keenan on June 17, 2008 at 2:49pm

Irishgirl, when we saw Dr. Wong in May, we also saw a nutritionist who went over a lot of things, one of them being sodium intake. She calculated (based on his current age, wt., ht., etc. I guess) what his max. sodium intake should be--which was around 1100 mg/day. It is not good for the heart--raises blood pressure, etc and with our boys already at risk for heart trouble, they want them to be as heart healthy as possible! (Become an avid label reader--just about every gosh darn thing has sodium in it. We went through this when my husband was diagnosed with Type 1 diabetes 17 years ago--everything has sugar/carbs in it!) I am sure there are other reasons for the sodium but this is what we were told. I don't know all the reasons for weight gain on steroids, but have heard from others that it does make them more hungry. I also understand that there is water weight as well--but am not qualified on this as Wyatt has not started steroids yet! (Hopefully we will start this month.) Others here might be able to give more insight.

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Permalink Reply by Julie Gilmore on June 17, 2008 at 10:12pm

A great snack for young children that is suprisingly healthy and quick to make is muffin pizzas.

We take English muffins, lightly toast them, and then put tinned spaghetti (low salt) on top of each half (you can also use baked beans which are a great source of protein). Top them with a little bit of low fat chedder cheese (grated so you don't need as much) and you have a perfect treat in under 10 minutes.

The one thing we have learnt with our little boy is to perservere...... all kids are resistant to change but eventually they adjust and life becomes a lot easier. Also don't cut out junk food completely - there has to be a quality of life for everyone (and I must say McDonalds tastes a lot better when it is a reward that is only had once a month.........)

Also, be mindful that we all need salt in our diets - just not in excess, and that there are other minerals that rely on salt intake for absorption. What a lot of people dont realise is that if they go to a low salt diet, they need to find alternative ways to get their daily iodine intake. (iodine is added to most table salts and is vital for thyroid function - hypothryoidism results in weight gain). Seaweed is a great way to replace the iodine intake lost when you reduce your salt intake, but a lot of kids just don't like that idea.... (on the upside too much cabbage has been found to reduce iodine absorption - so my son did cartwheels the day the cabbage consumption was cut in half).

Also remember that you still need essential fatty acids as these regulate blood pressure, and break down fibrin clots. They are also good for joint mobility, skin integrity and memory function, but you need to reduce the saturated fats that get stored in adipose tissue.

We have long debated the weight and diet issues over here, and no-one seems to have a good answer, I think the most important thing is to remember that nothing is bad for you in moderation and that is where this crazy world seems to have gone astray. The supersize me mentality is hurting everyone, not just the boys on steroids.

Time and experience will be the best indicator of what dietry changes you need to make, and looking at your child will tell you if you are on track.

You then also have to make a decision regarding quality of life, and the ramifications of mild weight gain. Our son gained a lot of weight on steroids, no matter what we did, and we have slowly got his weight back under control. He is in the heavy end of "normal" but in winter that is not such a bad thing as it means he doesn't get chilled to the bone, and has some energy in storage if he gets a chest infection and goes off his food.

Everything in life is about what is right for you. Just remember that salt, sugar and fat are all required by our bodies in moderation, and that life should be about having fun - make sure you allow an "anything goes" day every now and then and you will be able to look back without regret :-)

Hope that helps

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