Managing Weight Following Rhizotomy Surgery or Intrathecal Baclofen Pump Implantation

“Those calculating caloric requirements of children with severe disabilities should remain aware of the energy expended by spasticity. Relief of spasticity ... may have a marked effect on a child’s energy requirements.” 

Developmental Medicine & Child Neurology (2001 43: 277-278) Energy Requirements of Spasticity

Following selective dorsal rhizotomy surgery or implantation of an Intrathecal Baclofen Pump to reduce spasticity, your child’s metabolic rate may change. A child who is no longer burning energy through spasticity will use fewer calories and, subsequently, may experience significant growth, as a study in the 1990s of 28 children who had rhizotomies, demonstrated. Fifty percent of the girls grew taller and 45 percent of the boys showed improved growth. 

Children who continue eating their pre-surgery amount and don’t exercise may gain weight. Some weight gain and growth is beneficial. However, if children gain too much weight, it might compromise their health and mobility. 

For a number of reasons, children with disabilities tend to fare better when they are lean. Excess weight can stress joints and add to problems with osteoarthritis. People with limited strength find it easier to move, and it’s easier for other people to help lift and transfer them if they weigh less. 

Be sure to discuss weight management with your doctor after surgery or pump implantation. By about age eight, children who are inactive and overweight will find it hard to change their lifestyle and take off excess pounds. Here are some ways you can help your child establish healthy eating habits and exercise routines. 

• Make sure your child is eating healthy foods. 
• Never use food as a reward. 
• Switch oral eaters from whole to 1- percent or skim milk. 
• Let children eat their favorite foods, but decrease portions by one-fourth. 
• Cut back on fat in the diet. 
• Offer healthy, balanced meals. Avoid empty foods, such as pop and chips. 
• Limit juice, which is high in calories, to 4 ounces a day. If your child doesn’t like water, dilute the juice. 
• If your child has a G-tube, talk to your child’s doctor about cutting back on the amount you are feeding. Your doctor can assist in reducing calories appropriately. 

• Make exercise part of your family’s daily life. Children need a 20-30 minute sports activity, walk or swim 3 to 5 times a week. 
• Enroll your child is swimming, gymnastics or dance classes. At age 4 and 5, most sports are non-competitive and open to children with disabilities. They provide good exercise and a chance to socialize. 
• At home, use exercise videos or appropriate exercise equipment. 
• After age 13, children can begin weight training, which is a good way for children with cerebral palsy to gain flexibility and strength. 

A guide for parents of children with special needs 

These suggestions can help your child reach and stay at a healthy weight. (The consistency of the foods listed may be changed to better meet your child’s needs.) 

What does it mean to be overweight? 

Being overweight means there is too much fat in the body. People are said to be significantly overweight when their body weight is 15 - 20 percent over the normal height-weight standards. 

Why do some children with special physical needs have a higher risk of being significantly overweight? 

The physical activity of children with physical disabilities may be limited because of muscle weakness or paralysis. Being overweight may be due to too little exercise or too much food for body requirements or both. Children with special physical needs may also be short for their age. 

How can I help my child? 

Forming good food habits early in life is important to healthy weight maintenance. Children depend on parents to provide food habits and they also start very early developing attitudes, feelings and habits about foods. 

What kind and how much food does a child need? 

A child’s daily diet should include: 

• 3-4 cups of milk 
• 2 servings of meat 
• 4 servings of breads / starches 
• 4 servings of fruits and vegetables 

High-calorie, low-nutrient foods such as soft drinks, candy and chips should be eaten in small amounts. The food recommendations listed in this booklet can be given to your child pureed, if that better meets your child’s needs. 

• Offer the same foods to the entire family so the overweight child won’t feel deprived or singled out. 
• Serve meals “restaurant style” Dish foods in the kitchen rather than at the table to help control the serving size. 
• Encourage eating slowly. 
• Serve foods only at the table. Do not eat in front of the TV, directly from the refrigerator, or in any other room besides the kitchen.
• Try to eat only at planned meal and snack times. 
• Do not skip breakfast. Offer breakfast cereals and other low-fat foods. Children who skip breakfast are more likely to snack on higher calorie foods later in the day. 
• Serve fruit or angelfood cake for dessert. 

Healthy Snack Suggestions 

• Fresh fruit 
• Canned fruit packed in juice 
• Whole wheat crackers, saltines 
• Popcorn (air popped, “light.” no butter) 
• Ice milk 
• Nonfat, Low-fat yogurt 
• Make your own frozen juice pops 
• Chunks of bananas 
• Skim or 1 % milk 
• Raisins, dried fruits 
• Low-fat cheese cubes or slices 
• Fresh vegetables 

Low-Fat Cooking Tips for Preparing Food 

• Use a non-stick frying pan that requires little or no fat. Cook foods over low heat. 
• Low-calorie cooking spray may be used for frying foods without fat. 
• Remove fat from soups, stews, and gravies by chilling them first and then skimming off the fat with a spoon. 
• Use non-calorie sweeteners, available in liquid or granular form, for sweetening cereals or fruits. 
• Avoid gravies or cream sauces. 
• Season foods with herbs and spices rather than with fats. Lemon or lime juice is a good addition. 
• If making chocolate milk, use skim milk flavored with chocolate extract, cocoa, or use sugar-free chocolate milk flavoring instead of chocolate syrup. 
• Baking, broiling, boiling, roasting and grilling are the best low-fat cooking methods. 
• Remove all visible fat from meat before cooking. 
• Use butter flavors, available in powder or liquid form, on vegetables or starches. 
• Sprinkle Parmesan cheese on potatoes, vegetables or salads to add zest but few calories. 

Sit-down restaurant 

• Order food broiled, roasted, poached, steamed or baked. 
• Avoid casseroles and food with heavy sauces. 
• The best protein choices are poultry, fish, veal or lean beef. 
• Order salads without cheese, eggs, meat, bacon or croutons. Ask for salad dressing on the side so you can control the amount used. 
• Order a baked potato or seasoned rice instead of mashed, au gratin or fried potatoes. 

Fast-food restaurants 

• A good rule to follow is to order the cheaper and smaller items to save calories. For example: Hamburger–275 calories, Whopper–640 calories, Small cone–85 calories, Small shake–291 calories 
• Skip the French fries and onion rings. 
• Remove excess sauce or mayonnaise from the buns or order burgers plain. 
• Instead of a fruit pie for dessert (300 calories), try animal crackers. 
• Select a fast-food restaurant with a salad bar. Use low-calorie dressing. 
• Don’t order extra cheese on pizza. 
• Order rice instead of refried beans. 

The best way to lose weight and keep it off is by following a balanced lower calorie food plan. Weight loss may seem slow, but the general rule of thumb is “the faster the weight loss, the faster the weight is gained back.” Generally children should not be on a strict low-calorie diet. Good weight loss is usually seen by making better low-fat and low-calorie choices for meals and snacks. 

Goals for overweight children should include stopping weight gain and aiming for a weight loss of 1/2 pound a week. If children slip occasionally, just help them get back to the low-fat, lower-calorie eating plan as soon as possible. Encourage your child to start (or increase) regular exercise. Check with their doctor for guidelines. 

Record your child’s intake for three days. Please bring this record with you when your child comes back to clinic. This information will help to better assess your child’s diet and nutrition. 

A Gillette sports and leisure assessment can help you get on the road to a healthier lifestyle. For further information, contact Therapeutic Recreation at 651-229-3855 or recreation@gillettechildrens.com.