APBDRF Webinar: Mary Wallace on Patient Nutrition

© 2009 Baylor Health Care System p. 70

Diet

Recommendations

for the APBD

Patient

© 2009 Baylor Health Care System

Objectives

• Describe APBD study participants nutritional status

• Provide dietary guidance for APBD patients


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


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


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


Nutrition Concerns for APBD

• Maintaining appropriate weight

• Maintaining hydration to ↓ urinary tract infections

• Minimizing gastrointestinal complications

– Gastro-esophageal reflux

– Constipation

• Maintaining optimal nutritional status


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


Body Mass Index

APBD BMI

Under-weight

Normal weight

Over-weight

Obese

Extreme obesity


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


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


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


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


Gastrointestinal Complaints

Constipation

47% (9) study participants reported constipation compared to 14% (age 30-59) and 23% (age 60-75) of US population


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


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


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


Thank You

Thank you!


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

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APBDRF Webinar: Mary Wallace on Patient Nutrition

Health & Medicine