APBDRF Webinar: Mary Wallace on Patient Nutrition
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The document provides dietary guidance for patients with Adult Polyglucosan Body Disease (APBD). It summarizes the results of studies on 19 APBD patients, finding no nutrition deficiencies. Key concerns addressed are maintaining a healthy weight, hydration to prevent urinary tract infections, and minimizing gastrointestinal issues like reflux and constipation. Dietary recommendations focus on meeting calorie needs, sufficient fiber intake, limiting reflux triggers, and getting 50-100g of carbs per day.
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APBDRF Webinar: Mary Wallace on Patient Nutrition
- 1. Diet Recommendations for the APBD Patient © 2009 Baylor Health Care System p. 70
- 2. Objectives • Describe APBD study participants nutritional status • Provide dietary guidance for APBD patients © 2009 Baylor Health Care System
- 3. General Description/Clinical Presentation Slow, progressive disorder of nervous system characterized by: • Neurogenic bladder • Peripheral neuropathy • Gait abnormalities • Mild cognitive impairment • Symptoms typically present in the 5th or 6th decade © 2009 Baylor Health Care System
- 4. APBD Clinical Trials • Open label study with 6 patients • Randomized control study with 13 patients to date - A Treatment Trial of Triheptanoin in Patients with Adult Polyglucosan Body Disease – Clinicaltrials.gov ID NCT00947960 • Paris site with 5 patients © 2009 Baylor Health Care System
- 5. Description of Population Studied • 19 patients who participated in 2 studies conducted @ Baylor Research Institute/Institute of Metabolic Disease • Age range 35-70, average 58 • 6 female, 13 male • No overt nutrition deficiencies evident © 2009 Baylor Health Care System
- 6. Nutrition Concerns for APBD • Maintaining appropriate weight • Maintaining hydration to ↓ urinary tract infections • Minimizing gastrointestinal complications – Gastro-esophageal reflux – Constipation • Maintaining optimal nutritional status © 2009 Baylor Health Care System
- 7. Appropriate Weight • Best to individualize diet • Ballpark calorie needs – current weight (in pounds) x 10 to lose weight, current weight (in pounds) x 14 to maintain weight • If weight loss indicated, slow loss (~1% of body weight per week) is best to maintain muscle mass • Maintain as much activity as safely possible © 2009 Baylor Health Care System
- 8. Body Mass Index APBD BMI Under- weight Normal weight Over- weight Obese Extreme obesity © 2009 Baylor Health Care System
- 9. Healthy Weight Tips • Drink non-caloric beverages • Track food intake • Fill up on high fiber fresh fruits and vegetables • Listen to your body’s signals – don’t eat unless you are hungry, stop when you are satisfied • Limit high fat and sugar foods © 2009 Baylor Health Care System
- 10. Hydration • Fluid intake should be equivalent to caloric intake (1 ml/kcal), generally 2-3 liters/day • Urine color & clarity best indicators of sufficient fluid intake • Water is the ideal fluid • Avoid/limit caffeine containing beverages (cola, “pepper” drinks, some other sodas, tea, coffee) • Alcohol in moderation, if consumed © 2009 Baylor Health Care System
- 11. Gastrointestinal Complaints Gastro-esophageal Reflux (GER) 7-10% general population experience GER daily, 40% intermittently compared to 26% APBD patients reporting GER or being medicated for same © 2009 Baylor Health Care System
- 12. Tips to Prevent GER • Eat small meals • Consume liquids between meals • Sit up while eating and remain upright for 3 hours post meal • Wait 2 hours after eating before exercising • Avoid GER aggravators • Don’t smoke or use tobacco • Lose weight if overweight © 2009 Baylor Health Care System
- 13. Gastrointestinal Complaints Constipation 47% (9) study participants reported constipation compared to 14% (age 30-59) and 23% (age 60-75) of US population © 2009 Baylor Health Care System
- 14. Strategies to Avoid Constipation • Include sufficient fiber – 20-35 g/day – by consuming foods such as brown rice, fruits, beans, nuts, cabbage, carrots, Brussels sprouts and wheat bran • Fluid intake should be increased as fiber is increased • Exercise regularly • Establish routines and listen to body’s signals © 2009 Baylor Health Care System
- 15. Optimal Nutritional Status • Sufficient minimally processed fruits, vegetables, lean meats, whole grains & low fat dairy to provide needed vitamins, minerals, essential fats, fiber, protein as well as enough (but not too much!) energy • 7-9 hours sleep daily © 2009 Baylor Health Care System
- 16. Limit Carbs? • Limiting carbohydrate intake hasn’t been studied in APBD • No relationship observed between diet and severity of symptoms, age of onset • 50-100 g of carbohydrate is minimum recommended per day to spare protein © 2009 Baylor Health Care System
- 17. Thank you! Thank You © 2009 Baylor Health Care System
- 18. References Bowel Problems Associated with Neurologic Disease – Wald, A, University of Wisconsin School of Medicine and Public Health, Madison WI Adult Polyglucosan Body Disease: Natural History and Key Magnetic Resonance Imaging Findings, Mochel, F, Schiffmann, R et al, Annals of Neurology, Vol 72, No 3, pp 433-441 Prevalence of Overweight, Obesity, and Extreme Obesity Among Adults: United States, Trends 1960-1962 Through 2009-2010, Fryer, CD, Carroll, MD, Ogden, CL, NCHS Demographic and Dietary Determinants of Constipation In the US Population, Sandler, RS, Jordan, MC, & Shelton, BJ American Journal of Public Health, Vol 80, No 2 Evaluation of cranberry tablets for the prevention of urinary tract infections in spinal cord injured patients with neurogenic bladder, Hess, MJ, Sullivan, MR, Nee, M, & Yalla, SV, Spinal Cord (2008) 46, 622-626 © 2009 Baylor Health Care System
Editor's Notes
- Of importance to discussion re: nutrition related issues are neurogenic bladder, the impact the peripheral neuropathy and gait abnormalities have on activity levels and energy expenditure as well as the age of most presenting apbd patients – unlike wine, gi tracts don’t tend to improve w/age.
- Nat hx paper by Dr. Mochel and others 50 cases reported, 53% M All alb levels wnl – discuss/explain. Other labs, no particular trends
- Tricky w/concerns re: neurogenic bladder, but important to prevent serious complications, e.g. hospitalizations. By evaluating lab data, 5 of the 19 (26%) apbd patients lab data indicated possible dehydration Both caffeine and alcohol are diuretics.
- Really general – ideally should be individualized based on patient habits and needs
- Tricky w/concerns re: neurogenic bladder, but important to prevent serious complications, e.g. hospitalizations. By evaluating lab data, 5 of the 19 (26%) apbd patients lab data indicated possible dehydration Both caffeine and alcohol are diuretics. Balance key. Cranberry supplements
- GER can be merely uncomfortable or it can be serious causing damage to esophagus
- Common sense – re: avoiding irritants – individual thing, like your mom told you. OTC meds should be avoided other than ocassionally – see physician if frequent prob
- NHANES.
- Rec’s r 2x ↑er than average US consumption. Fiber intake should be increased gradually. Definition of fiber. Note these recommendations mesh w/rec’s 4 wt’ fluid
- Repair & maintenance activities take place during sleep, also newer studies relating weight gain to ↓ sleep
- Body has limited gly storage – a lot of variables determine what fuel will be used at any given time. A lot is unknown re: causes of pathological processes.