Family Nutri,on: Mee#ng everyone s needs Candy Richardson, RDN, LDN, CNSC Duke Children s Neuromuscular Program
Our Topics for This Session Unique needs : individualized nutri,on The roles of the individual and the family in nutri,on care Considera,ons in managing nutri,on needs in Duchenne 2
The Goals of Nutrition Maintain good nutri,on status Improve nutri,onal status Food and beverages, formula and dietary supplements make up our tool kits of: water energy (calories) from protein, carbohydrate, fat fiber vitamins and minerals nutraceu#cals 3
How Does Duchenne Affect Tool Selection? Ac,vity level/energy needs Steroid Treatment Excess weight- gain Poor bone health Short stature Reflux Dietary supplements Cons,pa,on Swallowing Difficulty 4
Regular Monitoring of Growth Growth, as a measure of nutri,on status, should be measured at each physician visit: Weight: Wheelchair scales, wheelchair weights Height: Es#mated from arm span, #bial length, etc. There are no widely accepted growth charts for boys with Duchenne At present, WHO and CDC growth charts are rou#nely used 5
Evaluating Body Weight Status Normally, the rate of growth varies with age For ambulatory, 7 to 10 year- olds with Duchenne, who are steroid- naïve, there appears to be a con,nuous increase in the rate of weight- gain The underlying causes of weight- gain may be more complicated than a simple increase in appe,te due to steroid therapy 6
Monitoring Weight Gain The greatest risk for overweight/obesity occurs from the ages of 9 to 17 years Weight- loss becomes a greater concern around 18 years of age If weight- gain is too slow or too rapid, ask to see the die,,an 7
Evaluating BMI Studies suggest that BMI does not accurately reflect a Duchenne pa,ent s true body composi,on A pa,ent s healthy appearance may actually be a reflec,on of fat and fibro,c infiltra,on Lean body mass correlates with muscle func,on Skalsky AJ, et al. Musc Nerve 2009;39(5):647-651. Pessolano FA, et al. Am J Phys Med Rehabil 2003;82(2):182-185.
BMI Goal: 10 th - 85 th Percentile for Age? Centers for Disease Control and Preven1on 1 Individuals with Duchenne are shorter and tend to the extremes of weight and BMI compared with the general male pediatric popula,on in the US. 2 1) Available at http://www.cdc.gov/healthyweight/assessing/bmi/childrens_bmi/about_childrens_bmi.html 2) West NA, et al. J Pediatr 2013;163(6):1759-1763.
Calorie Needs: Dietary Recommended Intake (DRI) for Age From: NIH Age (yrs.) kcal/kg/d kcal/day Adjusted 80% for MD Adjusted 70% for MD 4-5 70 1402 1122 6-7 64 1279 1023 8 59 1186 949 830 9-11 49 1756 1405 1229 12-13 44 1599 1279 1119 14-16 39 2385 1670 17-18 37 2230 1561
Looking at Calorie Density Examples Foods Kids meal: cheeseburger, fries, apple slices, milk Chicken Nuggets, waffle fries, milk Drinkable yogurt, 3.1 oz. Calories 530 600 70 Apple juice, 1 cup 117 ⅓ Estimated Daily Calorie Goal 4-5 yr. (80% of DRI) 8 yr (80% of DRI) 12-13 yr. (70% of DRI) 374 316 373 11
Diet Approaches for Weight-Loss Modify the usual diet Eliminate empty calories/low nutrient density foods Decrease por#on sizes Low- carbohydrate diets Low- Glycemic Index High- protein, low- carbohydrate 12
Helping Your Child Succeed Limit tempta1on Find healthier versions of favorite foods Share the sacrifice Keep an open dialog Make it fun Validate feelings Give choices Advocate and educate Praise oden Show tough love 13
When Oral Intake Becomes Difficult Chewing and swallowing problems Modifying food texture Nutri,on support, using feeding tubes If uninten#onal weight- loss is occurring, a G- tube can improve weight status 14
Protein Needs Acceptable intake is 10-30% of total calories, or about 1 gram per kg of healthy weight 6-7 year old boy needs about 20 grams per day 9-11 year old boy needs about 35 grams per day Protein content: 1 ounce of meat 7 grams 1 cup of milk 8 grams 1 ounce of cheese 7 grams 1 egg 6 grams Cheeseburger meal: 24 grams Chicken nugget meal: 31 grams 15
Is More Protein Better? There is currently no evidence that boys with DMD require addi,onal protein. Excessive protein can be harmful and add addi,onal calories. 16
Steroids Steroid therapy oben increases appe,te, but does not increase calorie needs Learn to use lower- calorie foods and beverages to manage the hunger while minimizing excess calories Make meals smaller (lower in calories) and plan on snacks Minimize ea#ng conflict Provide a balanced diet and encourage good intake, but don t pressure to clean your plate 17
Nutrition Considerations in Bone Health: Calcium Increased risk of low bone density Adequate dietary calcium 2½- 3 cups of milk daily If low dietary intake of calcium, then supplement 18
Nutrition Considerations in Bone Health: Vitamin D At least yearly, check total vitamin D level Adjust vitamin D3 supplement dose based on serum level 19
Is There Too Much of a Good Thing? Keep nutrients in balance Calcium vs Phosphorus Upper limits (UL) of safe intake have been established for many vitamins and minerals UL is the highest level of nutrient intake likely to pose no risk of adverse health effects for almost all individuals in the general popula#on 20
Considerations for the Informed Use of Dietary Supplements Dietary supplements: Intended to supplement the diet Contain one or more dietary ingredients or other cons,tuents (e.g., vitamins, minerals, herbs or other botanicals, amino acids, and certain other substances) Intended to be taken by mouth Labeled as dietary supplement Herbal supplements: A type of dietary supplement comprised of leaves, flowers, or seeds; oben used for flavor, scent, and/or poten,al health- related proper,es Botanical is oaen used interchangeably with herb. An herbal supplement may contain a single herb or mixtures of herbs. The law requires that all of the herbs be listed on the product label. Research has shown that some uses of dietary supplements are beneficial to health. For example, scientists have found that folic acid (a vitamin) prevents certain birth defects. Other research on dietary supplements has failed to show benefit; for example, several major studies of the herbal supplement echinacea did not find evidence of benefit against the common cold. Available at https://nccih.nih.gov/health/supplements/wiseuse.htm#hed1.
Do you Need Other Dietary Supplements in Your Tool Kit? Dietary supplements contain mul,ple ingredients Research confirms the health benefits of some dietary supplements, but not others Read and follow the label instruc,ons Natural does not always mean safe. An herbal supplement may contain dozens of compounds; some of its ingredients may be unknown Check for interact with medica,ons or pre- exis,ng medical problems, including some surgeries. Most dietary supplements have not been tested in children Tell all of your health care providers about any complementary health approaches that you use. This will help ensure coordinated and safe care The FDA regulates dietary supplements, but those regulations are different and less strict than regulations for prescription or over-the-counter drugs Available at https://nccih.nih.gov/health/supplements/wiseuse.htm#hed1.
What is the need? What is the right tool? Individualized nutri,on needs Individual and the family in nutri,on care Managing nutri,on care in Duchenne 23
Some Recommended Resources for Nutrition Information! hjp://www.choosemyplate.gov/! hjp://ods.od.nih.gov/health_informa,on/dietary_reference_intakes.aspx! hjp://www.cdc.gov/growthcharts/! Na#onal Ins#tutes of Health Office of Dietary Supplements at hjp:// ods.od.nih.gov/factsheets/list- all/! Na#onal Center for Complementary and Integra#ve Health at hjps:// nccih.nih.gov/ 24