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Starting steroids and diet changes

Hello all. We are going to see Dr. Wong next week and know that we are going to be starting steroids. Since our last visit we have changed our eating habits: no added salt, changed snacks etc. But my husband I were wandering if there is a certain amount that they should be restricted to. Also what else should we be watching, I know we want low fat and sugar but when it says low fat it is usually high sodium. Where are we suppose to give a little: fat/sugar or sodium?

Thannks, just getting worried that what we have been doing is not enough and we are not really prepared for what is coming.

Jess

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Permalink Reply by Lori Ware on October 14, 2009 at 3:24pm

Jessica,
I would keep it at the small changes and then make more if you need to. We did not change Seph's diet at all and after 4 years, he has gained very little above normal. We are now altering and trying to push more veggies, that is helping. It is the small things in the right direction that make a difference. Of course, we may not be the norm, but if you are going to put him no Deflazacort, weight gain is not as big an issue as on Predinsone. If you are doing Pred...that may very well be a different story! Good Luck!

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Permalink Reply by cheryl cliff on October 14, 2009 at 4:12pm

Hi Jess,

I've only been at the steriod/diet thing for a couple of years but my son gained a lot at first. We didn't want to stop or change the prednisone because of the medical research showing it helps dmd. So I had to change everything about how we ate. When you ask where are we supposed to give a little I would answer that question by saying all of the above. Fat, sugar and salt are all bad over the long haul for our guys. The only way I've found to get nutrition into his system without extra fat/sugar/salt is not for everybody...I have to make everything from scratch, and read every label. It's not always easy. What ever I make for dinner (cooking extra) goes into the lunches the next day. I make soups in large batches and freeze some for when I don't feel like cooking. I season with more pepper than normal and find other flavor enhancers besides salt, such as fresh lemon, fresh herbs. I grow some things we eat, incl herbs. Pastas typically don't contain salt so making sauce (and freezing) isn't too hard. We do eat box cereal for breakfast BUT only those with 10% sodium or less.

We splurge sometimes and don't worry about food when having fun or traveling. I think being conservative during the week allows more flexibility for special times. Hope this helps, not much is easy when your beautiful boy has duchenne.

cheryl

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Permalink Reply by Darcy Tumminello on October 14, 2009 at 8:05pm

Jess,

Hello, my son is 7 and started meds when he was 5. We saw Dr, Wong in March of 08 and my son had gained toooo much weight the first year. We had to maintain his weight for a full year. Hard to do with a growing boy. She was very happy when we arrived this year. He was in the 95 percentile in 08 and moved down to 55 in 09. I started out by just looking for low sodium and nothing else...well, that was wrong. Now I look for low sodium and low fat. I push veggies and fruit as much as I can. I let him be a little boy at birthday parties .etc...he eats whatever he wants. Hope this helps. It was painful at first...but you find what's right and it becomes routine..good luck

Darcy

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Permalink Reply by Joshua's mom on October 16, 2009 at 12:45am

For some reason we haven't ever had to change Joshua's diet. He has a habit of eating what his body needs. We taught him from the beginning (age 2) that he had to listen to his body if he needed to eat something. His body will tell him what it needs. Both my boys HATE McDonalds etc., and LOVE Subway. I guess I was just blessed with that!!! With teaching Joshua to listen to his body though, he takes mostly fresh fruit, whole wheat crackers with hard cheese, homemade muffins, left over supper or a tortilla with lots of vegetables on it to school. He helps me make his lunch though and chooses what he has in it. The healthier it is, the more he eats. I too read the ingredient lists on everything I buy, and my boys do it too. They will actually put really good tasting food back on the shelf if it says it has lots of sodium, fat, sugar, or is not whole wheat. It's something that we taught them early in life though. They drink apple juice all the time, but buying the 1L, we put it in a jug and put another liter of water in it as well. It's 1/2 & 1/2. With eating this way, he also takes 11 supplements daily plus his meds. He has never been overweight and even though he is almost 7, he has a little 6 pack on him. Like Darcy said though, everything becomes routine once it's just a regular thing that goes on everyday.

Naomi

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Permalink Reply by Tracey Hartz on October 16, 2009 at 7:06pm

Seth started deflazacort in August-we made some changes, like reducing processed foods (and our school lunches are TOTALLY out of the question except once in a while), eating out less, trying to have him eat more fruits/veggies...and he hasn't really had increased appetite, weight gain, or fluid retention at this point. I'm sure with prednisone you have to be much more careful, but we don't really get TOO hung up on it and we let him eat out and get whatever he wants every so often. Our neuro (who worked with Dr. Wong) said just to keep it under 2000 mg, which is quite a lot when you think about it. I've seen some people say under 1200 mg and that would be tough, I think.

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Permalink Reply by Lee Ann Faeth on October 20, 2009 at 12:13am

Hi Jessica,

My son Avery started Deflazacort a few months after his 4th birthday. At that time, the nutritionist at CCHMC advised us to keep his sodium intake under 2000 mg/day. She also recommending increasing his fluid intake to 52oz/day based on his height and weight at the time. Although it is a challenge, I have really followed their advice and we've had great results since starting with very little side effects. (he grew a little fuzzy hair on his back and had some minor behavioral changes in the beginning but that's it.)

During our last visit to CCHMC in February, the nutritionist actually told me it was ok for me to increase his sodium intake a bit and to try to aim for around 2000/mg a day rather than keeping it "under", which is what I had focused on. At this age, they do need some sodium in their diet for proper growth, so ulitmately it's just as much about making healthy choices. I make sure that he eats plenty of fruits and vegetables and keep the crackers, pretzels and junk to a minimum. I read the labels on everything and have been able to fine tune his diet to allow a variety of choices that don't make him feel like he's missing out. I wish you the best of luck on your trip.

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Permalink Reply by Teresa Wood on October 24, 2009 at 9:21pm

My son just started Prednisone about a month ago. I have been struggling with his diet ever since. I was told by the nutritionist to limit the sodium per serving to less than 250mg. Thinking about it per day might be easier for me. I have stopped letting him buy the school lunch, we have not been to McDonalds since. I agree that there should be times when they can just let go and eat certain things once in a while. Birthdays, special occassions... I don't want him to feel like this is a punishment. Thanksgiving we are going to DisneyWorld and I don't know what he is going to eat but like everyone of us I will do my research and educate myself. He had a doctors appt last week and his blood pressure is good and no weight gain. I would be interested in knowing of the kids on Prednisone what kinds of dosages are you all being given? I am sure that has some affect on possible side effects and weight gain.
Thanks,
Teresa

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Permalink Reply by Emily on October 24, 2009 at 9:30pm

Jessica,
Beau has been on deflazacort for 6 months now and doing great. At first, I was panicked about everything he ate that it was going to make him gain weight. I have been able to taper off a little from such a strict diet because weight gain has not been an issue at all. He has gained 3 pounds since he started, which is so interesting because he looks leaner. People that haven't seen him in a while tell me that too. Our biggest issue on the deflazacort has been behavior....just giving you a heads up....