Originally Posted by Momily
He's actually only on inhaled steroids now (he was on oral non stop for the first two years and tracked below the 3rd percentile -- when he came off he started growing) but they still have a dramatic effect -- he literally completely stops growing up when he's on Flovent. I do think he "catches up" when he stops but the result is that by the end of allergy season he's looking pretty overweight while he waits for his height to catch up.
I do feed him on the low carb side -- we do lots of berries and canteloupe and not much other fruit, lots of lower carb veggies, but also a couple of servings of whole grain a day -- usually soaked or sprouted, although the pancakes were neither. He also gets a couple of servings of refined grain most days because of snack at school (sigh). I've heard that going really low carb in unhealthy for kids -- any thoughts on that?
I am no expert, but have experienced a lot with asthma and steroid side effects. I will share what I think I know.
It sounds like your DS is sensitive to the steroids (although I am not sure how common his situation is) but to have the inhaled affect him is a red flag for me. So I would believe that his insulin is definitely messed up and he may be having problems absorbing vitamins (be sure he's getting some supplements like B vitamins which are essential for energy production. Also calcium and other minerals which should all be taken as far away from the steroid dose as possible to maximize absorption).
Lower carb is probably ideal, but not without a lot of reading and studying and education on your part because you don't want him to be on a weight loss diet, simply a diet that works well with his metabolic challenges. I would maybe look at the South Beach books for ideas but be careful to avoid a weight loss diet. Look more at the combinations of proteins and veggies/fruits.
Unfortunately, I have not seen any books or resources specific to nutrition in the face of steroids. So you will kind of have to read the low carb stuff and sift and filter for the nuggets that will actually help your DS. Most doctors do not really pay attention to the side effects and don't provide nutritional counseling (which is so negligent imo). Frex, did you know that prednisone interferes with calcium uptake in the cells and can cause all sorts of contraction issues with muscles? Grrr. This is the kind of stuff they don't tell you! Which would be kind of nice to know! I myself now taking daily calcium supplements along with magnesium and potassium to compensate for this.
Personally, I would also avoid grains (rice, bread, potato) as much as possible, but that's a personal preference. And I would try to find a good nutritionist and endocrinologist to consult with, but ime that will take some digging. And again, you kind of have to do some homework so you can filter out bad advice. Plus, your DS will need to understand his metabolic situation so he is onboard with avoiding simple carbs. I suspect, his body will be affected by the steroids long term as that has been the case for me.