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Reprinted from: Reflux Digest by Jan Gambino-Burns, former Associate Director of PAGER This article is the first of a series by a long time PAGER member. It introduces some of the special challenges of reflux and how they influence eating behaviors. In this installment, Jan reviews the book “Poor Eaters” and interviews the author. -Ed. Beyond Picky - Life with Feeding Issues I sit at my daughter's table at the elementary school cafeteria and watch the first graders eat lunch. Not only that, I study their eating... Some buy lunch, some bring food from home. Every kind of food and drink imaginable is consumed. The bottom line is: they eat, without effort and without pain. It is an automatic, satisfactory, functional behavior that occurs over and over each day. Then there's my daughter, Rebecca, a 6 year old with severe reflux who experiences pain and loud belching from most foods. She opens her Pooh lunch bag and examines the choices. She reluctantly pulls out an item while explaining that I packed the wrong food (again!). She carefully bites and chews a few morsels, consuming very little. At the end of lunch, the kids throw away a mountain of empty wrappers and juice containers. Rebecca has enough food left for another meal (or two). You have probably had a similar experience whether it’s watching a neighbor feed her kids or watching a baby food commercial on T.V. The infant or child seems so satisfied and content, the mother or caregiver looks competent and confident. The baby grows plump and happy; the child is robust with unlimited energy. Eating and growing just seem to happen...to everybody else's kids!! Those of us feeding children with reflux may feel like we have failed as parents because we haven't been able to provide basic sustenance to our own children. Often we get feedback, whether spoken or implied, that we are responsible for the feeding problems. Behavioral problems, crying and tantrums, and sleeping disturbances wear us down. Our relationship to our children can be altered, leading to frustration and disappointment. We work so hard and get so little in return. Poor Eaters: Helping Children Who Refuse to Eat by Joel Macht When children with reflux eat, they often experience pain, abdominal distention, belching, a bad taste (when acid mixes with food) or vomiting. Eating can be very scary and painful. Over time, the child realizes there is a cause-effect relationship between eating and bad things happening. The child may try to "fix" the problem by only eating certain foods (food avoidance), eating small quantities (failure to thrive) or stop eating all together (food refusal). Secondary problems include: poor growth, poor nutrition and unusual attitudes toward food (profound disinterest in food). Joel Macht asks, "What is the meaning of the child's food-refusal behavior?" "What is the child trying to tell us through her refusal to eat?" Unfortunately, the simple causal relationship between pain and eating escalates into generalized food aversion and a multitude of behavioral problems. Mr. Macht vividly describes many of the behaviors children exhibit and provides step-by-step interventions for parents to try at home or in conjunction with a specialist. His approach reflects immense respect for both the child and the parents. So, it’s time to get over the blame game and take action on behalf of your child. You know your child best. You are his/her best advocate. Joel Macht believes that full evaluation should be undertaken before starting any intervention. Some children experience a dramatic reduction in pain with a change of diet or control of an underlying health problem. Other children have multiple issues of unknown, uncontrollable symptoms that require quite a bit of skilled detective work to uncover. Let’s go through the process step-by-step and see where further work is needed. You will certainly want to consult with your child's physician and ask a lot of questions. If you have been with the same doctor for a long period of time, you may want to review the entire history of the problem. Some parents seek a second opinion to obtain a new view on the problem. Remember, the bottom line is to reduce/eliminate pain as much as possible before making any attempt to correct eating issues. Here are some questions to discuss with the doctor(s): 1. Have all medications and combinations of medications been tried? Is my child receiving the maximum dose? Some parents find that a change of meds is all it takes to control reflux. 2. Have food allergies been ruled out? PAGER members suggest working with a doctor who is very familiar with reflux and allergies to do skin tests, R.A.S.T., ELISA and supervise elimination diets. Allergies can be the underlying cause of reflux but testing is not always accurate and false negative results are common. 3. Have we ruled out lactose intolerance (Breath Hydrogen Test, blood test, elimination diet)? Again, a few children will become pain-free simply by changing formula or eliminating milk from their diet. 4. Share your observations about: timing of intake, food tolerances/intolerance's and behaviors noted. Include sleep or lack of here. 5. Is my child aspirating food/fluids? A child who does has a very good reason to be afraid of eating. 6. Does my child have an oral-motor problem? (This issue will be addressed in detail in the future). 7. Is surgery warranted to control reflux that hasn’t resolved with other treatments? (Please order a back issue of Reflux Digest devoted to this decision.) Interview with Joel Macht. Jan: What are your current professional affiliations? Joel: I'm coordinator of a graduate special education program at Western Maryland College, a small liberal arts college some 30 miles west of Baltimore. I also direct a small grant that brings me in contact with a local elementary school teachers and pupils. Jan: Do you treat children who exhibit eating difficulties in private practice or in a clinic? Joel: Neither, actually. I haven't been affiliated with a clinic serving failure-to-thrive youngsters since my work in Denver, some eight years past. I have had the good fortune of working with a sizable number of parents experiencing difficulties with their children's eating via the Internet and through the use of videotapes of their children during feeding sessions. Thankfully, I've been aided to no small degree by professionals already assisting those parents in their home communities. Nearly half the kids I worked with were fed argumentatively. The goal was to wean them off the g-tube while increasing body weight. Jan: Are feeding programs helpful for all children? Joel: I think that behavior programs designed to introduce and/or maintain oral feeding programs should be placed on hold until it is clear that no underlying physical problem exists that either interferes with swallowing and eating or produces gastrointestinal discomfort as a result of swallowing and eating. Using positive or negative reinforcement to increase swallowing when that behavior produces measurable discomfort for the youngster is counterproductive. The child will learn undesired avoidance behaviors, thereby creating behavior problems. Parents and their physicians must make every effort to identify and reverse (or ameliorate) physical issues before a behavior program is initiated. However, a behavior program (or what today is called a ‘functional assessment’) can be extremely helpful even before a feeding program has begun. A major component of a behavior program is ascertaining if there are any circumstances when a child’s eating/swallowing is successful, for example, the child swallows smooth pudding without issue but gags when chunks are present. That information is essential. Jan: Are there specific characteristics and problems associated with children with reflux? Joel: Reflux interferes with the natural and, most often, enjoyable activity of eating. Gagging and aspirating do likewise. So does a youngster's acquired fear of having something as benign as a spoon touch his lips? There are degrees of each, and if the degrees are minimal, the problems most often are the same. I recall young children with reflux handling the condition as if it were no more troubling than putting on a clean shirt. Conversely, if a child has experienced great difficulty with swallowing, if there has been persistent, painful reflux for extended periods, the associated problems are rarely insignificant. To the contrary, children (and their parents) who have experienced prolonged problems with eating exhibit a host of characteristics - including (this is the short list) screaming, crying, thrashing, throwing food, and throwing up(!) -which kids can learn to do if that behavior puts an end to a parent's persistent efforts. (Parents rarely exhibit the last of the short list.) Eating and feeding become activities to avoid. If there is a common characteristic that universally crosses this population of chronically refluxing youngsters, it is that eating is rarely a satisfying experience. And because feeding must occur several times a day, every day of every week, frustration, disappointment and, unfortunately, anger are frequent visitors to the experience. Poor eaters and unhappy parents often follow. Jan: Are poor eaters and picky eaters one and the same? Joel: I should share that the book's title, 'Poor Eaters,' was the publisher's idea. My intent was to help parents with children who had experiences, often physical in nature that interfered with eating. Had she pushed for a title like Picky Eaters, I would have objected. Poor eating is beyond pickiness. I'm sure we all have an image (and a definition) of a child who is a picky eater. They eat one thing only, for weeks on end, grilled cheese sandwiches for breakfast, lunch and dinner. Or chicken only, or P B & J's. Nothing else, please! Or they'll eat three baby peas and insist that another bite of anything will cause their stomachs to burst. Or they'll happily miss a meal, treating food as if it were a leper. I recall with great affection my own son as a youngster subsisting for weeks on a favorite theme that changed according to his clock. (There were some limitations, of course). I remember his abhorrence for anything green. Once a mushroom inadvertently fell onto his plate. My goodness you would have thought the world had moved off its axis. The family would go to a Mexican restaurant and he'd order an American hamburger. Soon his tastes expanded: he'd order a taco, but without lettuce, tomato, or cheese. He knew what he wanted and what he didn't want. Today, he's a healthy, strapping adult who can't wait for Thanksgiving's French-cut string beans with toasted almonds, and green-chili cornbread stuffing. 'Picky eaters' can become healthy eaters. Oh, you want to talk 'picky eater?' Place a fried egg in front of my wife and see how quickly she dashes from the table. We're all picky (finicky?) about what we eat - or we should be. But picky- and poor-eaters are not one in the same. The poor eater I referred to in the book refused food not so much because of preferences, but because he had forgotten, or never learned, that eating by mouth was an enjoyable activity that produced pleasant tastes and reduced the discomfort from hunger. Instead, he had learned that swallowing and eating were painful and frightening, and he had learned adaptive ways to avoid eating. In my judgment, had the poor eater not experienced hospitalization or illness that interfered with a natural eating sequence, had he not, by necessity, been fed by tube, had he not experienced persistent reflux or gagging, had he not come to associate eating with fear and discomfort, he would have happily eaten a taco (or a bowl of cereal) of his own design. For the vast majority of children who are 'poor eaters,' there's much we can do to help them turn the corner. Most will find their footing themselves. With patience, mutual support, and professional direction, parents can help those children who need some assistance. Jan: Can you give parents of children with reflux some advice on preventing the severe feeding issues that sometimes develop from reflux? Joel: I doubt it’s possible to prevent the gamut of problems associated with reflux and other feeding issues. Some food aversion can’t be avoided—some children experience physical discomfort from eating before we realize it, and that discomfort sets the stage for them to begin avoiding what produced the unpleasantness—eating. Likewise, some children, by necessity, are fed argumentatively from their earliest days. Satisfaction from hunger, therefore, occurs without their active participation—they feel better but they have no idea why. Requiring these children to quite suddenly consume food by mouth is often met with closed lips, turned heads, and loud screams. (If that weren’t enough, if a child learns that loud screaming causes a parent to terminate a feeding session, the child will log that lesson for future use. That, by the way, is a behavior issue.) It’s essential, therefore, to feed a child only when he’s hungry. Feeding him (forcing him) when he’s not hungry is asking for all sorts of trouble. Further, it’s quite likely that a day-old-child knows pain and has the capacity to begin avoiding it. It’s critical, therefore, to investigate whether swallowing solids or liquids produces physical discomfort. Infants do learn to turn their heads toward food. It’s just as likely they learn (quickly) to turn their heads away from food. So, find a doc who understands how hunger and pain influence a child’s willingness to eat by mouth. A final word, not so much about prevention, but about progress. Eating problems take time to develop. Reversing them takes time as well. It also takes a good plan, it takes consistency, and it takes patience. Be prepared for that frustrating two steps forward, one step backwards dance. Dig deep and find your optimism. Wear it boldly so your child can feel it. Jan: Could PAGER provide information on how to contact you for consultation? Joel: Absolutely. So long as parents understand that distance intervention has its limitations, I'm happy to help however I can. The key to providing beneficial assistance is to observe the feeding session directly and provide timely feedback. If parents have engaged the services of a therapist experienced with feeding or other behaviors that lend themselves to step-by-step improvement, progress can be made. I have found that often a word or two supporting or redirecting a parent or therapist's efforts can be very helpful. Poor Eaters is available from Amazon.com. If you follow the links from the PAGER web site and make your purchase within 24 hours, PAGER receives 10% of the purchase price. If you have additional questions after reading the book, please send your questions to Dear PAGER. E-mail is preferable. We may include some questions of general interest in the newsletter and have Mr. Macht answer them. A Note About Documentation: I have a file folder that I take to every clinic appointment and hospital stay. The folder also comes on trips in case there is an unexpected health problem. It contains a copy of every discharge summary, clinic note and test report on my child. In addition, I keep a daily symptoms diary that I take to all doctor appointments for a accurate, daily log of events. You and your doctor can use the data very effectively -it gives us more 'clues' to diagnose a problem. Instead of saying, "I think she's allergic to___,” present a 3 day intake record of everything consumed and all symptoms and behaviors, even if they don't seem related to eating. I know a mom who videotaped her son having a seizure after he had a normal EEG. After viewing the tape, the doctor was able to diagnose a rare seizure disorder and now uses the tape to train medical students. So if your child is a little angel in the doctor’s office, try a video or audio recording of the real stuff! I periodically take a "snapshot" of my child's typical eating patterns. Every month of two, I write down her intake for one day. It helps me see patterns and get some perspective. Sometimes things look so hopeless on a day-to-day basis. It may be that a subtle change in eating has occurred and your written history can help you identify the small victories. The travelling file folder can also contain a copy of your child's growth chart. Your doctor or nurse can show you how to fill it out. When Rebecca was a baby, she had silent reflux and noisy asthma. When she fell off the growth chart, the doctor started treating her reflux. Again, a growth chart can give you and your child's doctor the big picture of growth. Whether you have an infant or an older child, it is never too late to begin a record keeping system. Who knows, maybe your child will grow up to be president and your journals will be worth a lot of money. I am keeping notes on Rebecca's diet because I think it will become the next fad weight loss method. I plan to write a book and appear on Oprah! Many thanks to Jan for a wonderful article. Much of it was written while Rebecca was hospitalized. I’m sure many of our parents will be putting Joel Macht’s book on their holiday wish list. Reprinted from: Reflux Digest Vol 5 (2) 2001 Eating Problems and Reflux- Part II Home Intervention By Jan Gambino-Burns Introduction Many infants and children with GERD experiences pain, bloating and nausea from eating and drinking. It makes sense that they will find a way to” fix” the problem, namely refusing to eat. Often children will limit the quantity or variety of food in an attempt to reduce symptoms. Parents and feeding specialists report that children may develop oral motor problems including oral motor sensitivity, immature or abnormal oral motor skills and difficulty progressing to more mature feeding skills (from pureed food to chunky, crunchy textures). The longer the child connects eating with pain, the greater the avoidance behaviors. Most often these avoidance behaviors are acquired “slowly (and) without notice” according to Joel Macht. In his excellent book, Poor Eaters, author Joel Macht describes how poorly managed pain leads to secondary reactions such as food aversion, aversion/distress at the sight of the highchair, utensils, bottle or bib. He believed that children don’t eat for a variety of reasons:
Not hungry Physical discomfort Never learned to associate eating as a way to relieve the discomfort of hunger Memories of unpleasant associations of eating Lack of positive or natural feedback Child avoidance behaviors Food aversion due to reflux Foods may leave a bad taste in her mouth, cause nausea, vomiting, gas bloat, vomiting, burping, and belching. (From Picky Eaters, Page 111) Most of us have a positive attitude about eating-it is fun, it makes us feel good, and food gives us energy. It may be hard to imagine what our children are experiencing. How does it feel to have someone feed you? Sit in a chair and let someone feed you with a spoon and cup. Be sure to cover yourself with a large towel or sheet. This could be messy! First have the person feed you at your own pace, when you open your mouth; the spoon is placed in your mouth, etc. Then have the feeder pick up the pace, continually spooning food in your mouth. When I was fed this way, I turned away, clamped my mouth shut, choked, and tried to push the spoon away. Sound like someone you know? Ages and Stages When children grow and develop at a different rate, it can be confusing. Some children may stay at a stage longer than expected; others may quickly skip ahead or develop an unusual pattern. A child may have an interest in eating but have an oral motor problem that interferes with optimal eating. No matter how your child is developing, it is important to look at normal developmental stages and developmental issues. It may help to pair the developmental/mastery needs of the child with the feeding/eating stage. For instance, a toddler may want to assert his independence (developmental stage) and suddenly refuse to accept food from a spoon because he would like to do the job himself (self-feeding skill). Infants Ages and Stages It is important to tune in to the behavior of your baby. While they may seem difficult to understand, their cries, eye contact and body language are an attempt to communicate to you about what they need. Sometimes the message isn't at all clear. Study your baby and look for patterns. Common Problems: Why she won't eat: Pain Not hungry Not associating food (eating) with relief from pain (hunger) Food allergies/intolerances Poor motility Suck/swallow/oral motor problem Intervention: Often mothers end up with the ultimate responsibility 24/7 of caring for a sick, crying, and fussy infant. Often, we are the only ones who can provide some element of comfort, even if it is for a fleeting moment. This can be one of the most challenging and stressful parenting experiences imaginable. It can also be very lonely, leading to feedings of isolation. Many of our friends and relatives just cannot understand our special circumstances. Jon Kabat-Zinn in his book, Full Catastrophe Living writes, "There is an art to facing difficulties in ways that lead to effective solutions. When we are able to mobilize our inner resources to face our problems artfully, we find we are usually able to orient ourselves in such a way that we can use the pressure of the problem itself to propel us through it, just as a sailor can position a sail to make the best use of the pressure of the wind to propel itself." This may seem like heady stuff to someone who is subsisting on 2 hours of sleep and sips of water. The author believes in Zen Buddhism and the need to live in the moment. Ultimately, there needs to be a way for you to take care of yourself so you can deal with a difficult situation. I found his words very comforting and helped me focus on the job at hand. Kabat-Zimm and his wife wrote a parenting book called Everyday Blessings. While not a "how to" book in the usual sense, the authors acknowledge the enormity of parenting, "Being a parent compounds stress by orders of magnitude. It makes us vulnerable in ways we weren't before. It calls us to be responsible in ways we weren't before. It creates chaos and disorder, feelings of inadequacy, occasions for arguments, struggles and irritations. Plenty of opportunities for getting stuck, angry, resentful, hurt, and for feeling overwhelmed." Give yourself credit for dealing with a stressful situation as gracefully as possible under the circumstances. It can be extremely difficult to be a wife/mother/nurse/doctor/nutritionist/pharmacist/housekeeper/day care provider while caring for a high need infant. Things to try Set up a routine for yourself and your baby- routine and predictability are vital to both of you. Feeding a baby can take up a lot of your time. Tools you will need:
Relaxing music A glass of wine or some hot tea Phone by your side This is your Zen moment. Nursing was very comforting to Rebecca and I set up my rocking chair near a window where I could watch the birds at the hummingbird feeder. It was my Zen moment. Check your facial expression, tone of voice, muscle tension. Even a very young baby can sense a caretaker’s emotional state. If you find yourself getting tense, consider letting another adult care for your baby so you can take a break. If needed, place your baby in a safe place such as a crib for a few minutes while you regroup. Pair cuddling/talking/singing /rocking. There are many parenting books with information about comforting a distressed infant. Use your baby’s doctor or nurse as a resource on comforting ideas. Baby Inconsolable? Talk with a doctor, nurse, childbirth instructor, physical therapist, lactation consultant, another mom, etc. about comforting, positioning and feeding techniques. Frequent burping, thickened formula, different formula, different bottles can all make a difference. Wear your baby. There are various slings and front packs for keeping your baby near you. This may not comfort your baby but it is a way to free up your hands for a little bit. There is some evidence that carrying your child in this way helps young babies regulate their temperature, heart rate, etc. Have a back up plan for yourself (when you can't take another minute) Take a walk, call someone, and take a ride in the car. This might be a good time to call your doctor or nurse so they can hear the real thing! Just remember it is OK to put the baby in a safe place and walk away if you are losing it. Other Kids? Gather everyone in bed or on the couch. You can all cuddle/eat/cry together. Even a very young child can turn the pages of a book, get things for you, sing a song to you. Another Zen moment. Enjoy the moment; it is important, your child is important. Make the moments spent together special. Introducing Solids: There is great controversy about when to introduce solids. Many people believe eating solids will help a baby sleep through the night. Eating by mouth involves learning that eating is pleasurable. Eating by mouth requires turn-taking between the feeder and the baby; this is the precursor to language. After all, having a conversation involves taking turns-listening, then speaking, then responding. Eating from a spoon involves: looking at the baby, observing readiness (looking at you, mouth open, vocalizing, waving arms in anticipation), food is placed in her mouth; the full cycle has been completed. Babies communicate when they are all done or need extra time by turning away or closing their mouth. If your baby doesn't respond: -Read books about feeding stages and developmental stages. -watch someone else feed their baby -feed another baby -consult your doctor or specialist -consult a feeding specialist such as a speech therapist or occupational therapist. -take a break from spoon feeding and try again in a few days or weeks. Caution: -early exposure to some foods can trigger allergies. - an immature digestive system may not be able to digest some foods so work with your doctor and try new foods one at a time. -Oral-motor skills can be delayed, making spoon-feeding difficult to impossible Toddlers Ages and Stages Normal stuff: It is common for toddlers to experience a deceleration in weight gain as toddlers become more upright and mobile. Many toddlers (without GERD!) experience some food refusal and food preferences. Toddlers are developing independence and may reject spoon-feeding in favor of self feeding (finger food, using utensils). Things to learn: Scooping with a spoon, sipping from a cup, rules of eating-look at how your family eats, what are your habits. Common Problems: Parents of toddlers with GERD may experience problems determining if a feeding problem is related to normal development or a complication of GERD. Toddlers may behave inconsistently from day to day or even from meal to meal, making it difficult to determine a pattern. Toddlers with GERD may not have the classic GERD symptoms of vomiting and crying seen in infancy. These symptoms are replaced by belching, regurgitation, coughing/choking and throat clearing. Toddlers with frequent ear/sinus infections or respiratory symptoms may have continued GERD. Toddlers can be very skilled observers and may respond to our stress and disappointment about poor eating. Toddlers may be susceptible to nutritional deficiencies as they are weaned from formula and exhibit food selectivity/refusal. Intervention: ROUTINE is important. Toddlers should join the family at all meals, even if not eating by mouth. She may make a wonderful sculpture with mashed potatoes and Cheerios and even taste a little by accident! Make eating less threatening through play: feed a doll or mommy, play with utensils or wear a bib. Help the toddler communicate verbally or non-verbally about eating: more, all done, etc. Expand her vocabulary with new words: hot, sticky, cold, wet. Some toddlers may want to play with pudding or play dough and pretend to “cook”. Be prepared for a mess! Use a special medicine spoon or syringe for each medicine so the child can distinguish between medicine and food. Avoid using an "eating utensil" for medicine. Food is food, medicine is medicine, and they go into your mouth in very different ways. Your child will still give you a battle with the yucky medicine and happily suck down the delicious ones. However, your child won't associate a bitter medicine on a spoon as a new kind of food. Invite your toddler’s little friends over for a meal. It can be depressing to see them eat a big meal and ask for more. However, it gives you a baseline of what other children do. Your child may be willing to imitate a friend and try a new food or feeding skill such as drinking from a cup or straw. Encourage her to connect her symptoms to foods that are irritants. Allow her to regulate her intake. A preschooler should fill her own plate at mealtime and decides when she is done. Make sure that you have rules in place that encourage healthy eating habits-sit at the table, have a pleasant conversation, decrease distractions such as TV and phone calls. Let your toddler assist you with food preparation and shopping. Your child can mix, cut a banana with a plastic knife, and spread peanut butter on a bagel or cracker. Use those plates with sections as a tricky way to add food groups to the menu when only one item is on the "favorites" list. If the plate has 3 sections, your child can chose 3 things or the parent can just make some decisions: one old favorite, one tolerable food, one new food. Or, one section for each food group: meat, starch, fruit, etc. Older Kids: Ages and Stages: Older kids strive toward mastery and independence in everything they do. Other children and the media may have a tremendous influence on their body image and their eating habits. However, older children still watch us for clues about eating habits, manners and rituals about food. Common Problems: Common problems with older kids include: Over consumption of fast food and unhealthy foods. Rushing during mealtime, leading to ingestion of air and abdominal pain. Resistance to taking medication and following a eating plan if it makes a child stand out. See the PAGER publication titled, Going to School with Acid Reflux for more information. Food allergies/intolerances. Lactose intolerance is common. Intervention: Lifestyle changes such as small, frequent meals, wearing lose clothing and avoiding foods that trigger GER symptoms can be very helpful. In addition, older children may need to avoid exercise after meals and elevate the head of the bed to decrease symptoms. Holidays: Keep to a normal meal schedule for parties, holiday dinners, etc. by pre feeding or post feeding the child with reflux. Bring your own food. The child can still sit at the table for a special meal or celebration. Help your child identify and avoid foods that trigger symptoms. If soda causes problems, teach them to politely decline and ask for water instead. You can “buy” holiday candy from your child or exchange it for a toy or more meaningful item. Birthday party goodie bags; Easter baskets, etc. can contain toys. It's healthier for everyone. Older children should learn to perform simple tasks in the kitchen such as preparing a snack or simple meal. It may be helpful to go shopping with your older child to choose some healthy foods and drinks. Help the older child evaluate food for nutritional value and begin to make decisions about food. Foster a positive attitude about foods and eating. If they have a positive attitude about food, they may be more willing to try a new food or try a similar food. Like Ritz crackers? Try another brand/flavor to expand their repertoire. Be careful that the older child doesn't over-compensate and reject major food groups due to previous problems. Some older kids hesitate to eat new foods because of past experiences. Give your child autonomy within rules. Offer limited choice such as a sandwich, bagel, yogurt, or hot dog (rather than cookies, cake or ice cream!). A rather simple and straightforward set of rules may include: at dinner time all foods served must be on the plate however you may choose what to eat and the quantity. In our household, it is OK to eat components of food: plain pasta instead of pasta with tomato sauce. Remember the most important rule: you are not a waitress!!! It is probably hardest to get older kids to eat well on the go. Between school, clubs and sports, they may not have the time or desire to eat slowly and carefully. Help the older child realize that their diet is part of their treatment, just like a medication. Perhaps an older child will be motivated to address a special diet if diet/lifestyle changes lead to a reduction or elimination of medication. Vol. 6(1), Summer 2002 Feeding Clinics By Jan Gambino-Burns Introduction Children with reflux may be referred to as "picky eaters " since it is common for children with this condition to have varying levels of food selectivity/refusal. This poor intake can lead to poor weight gain and delayed/abnormal feeding skills. I dislike the term "picky eater" and prefer the term "careful eater" to describe a child who approaches eating with a great deal of wariness. A careful eater may have repeatedly experienced a sensation of pain/discomfort from some or all of the following: swallowing, food passing through an inflamed esophagus, abdominal pain, fullness/bloating, retching, vomiting. Imagine that every food, whether it was a hamburger or a slice of chocolate cake tasted as spicy as a red pepper. It wouldn't take long before any of us reconsidered the importance of eating. Over time, the primary problem (reflux) leads to an array of secondary problems such as failure to thrive, dysphagia (swallowing disorder), oral aversion (sensitivity in the mouth), food refusal/selectivity, dependence on a nasogastric tube or gastrostomy tube, delayed or absent self-feeding skills, negative mealtime behavior and parent/child interactions. A child with some or all of these symptoms may be referred to as having a "Pediatric Feeding Disorder". Kennedy Krieger Institute and most practitioners define "Pediatric Feeding Disorder" as the inability or refusal of a child to take in enough nourishment to gain weight and meet nutritional needs. While it may seem like your child has a rare and unusual condition, statistics provided by Children's National Medical Center in Washington, D.C. estimate that 6 to 35 % of infants and young children have a feeding disorder. The condition is much more prevalent in children with developmental problems. Many infants and children with reflux respond to medication, special diets and positioning and have no trouble eating and drinking. These children gain weight and thrive with little or no intervention. However, many children with reflux experience varying levels of discomfort and pain from eating and try to "fix" the reflux by restricting their diets and refusing to eat and drink. These children may need some extra assistance to develop healthy feeding skills (See article on Home Intervention, Reflux Digest). Children with developmental disorders, medical conditions or prematurity may be more susceptible to reflux, poor growth and feeding disorders. Children who fail to respond to medical treatment and home intervention may be referred to a speech therapist or a behavioral psychologist to work on specific feeding skills. A child with multiple medical issues, a precarious nutritional condition (dehydration, failure to thrive, n-g tube or g-tube dependence) or a significant behavioral response to feeding may benefit from a more comprehensive feeding clinic or feeding program. A feeding clinic offers a variety of services (in patient, out patient, clinic, short-term, long-term) utilizing a variety of specialists including, doctors, therapist and psychologists to help children develop normal feeding skills, increase intake of food and drink and manage sensory/developmental problems. How do I know if my child needs a feeding clinic? Feeding intervention is indicated for a child with one or more of the following feeding issues: Food refusal-turns away, spits out food. Extreme food selectivity-eats only a few foods or kinds of food. Gastrostomy or Nasogastric tube dependence, accepts little or no food by mouth. Behavioral problems related to mealtime crying, gagging, vomiting, throwing food. Poor hydration/fluid intake-doesn't drink enough fluids Poor intake of food leading to failure to thrive. Oral-motor problem-tactile defensiveness, gag, swallow, suck dysfunction. Delay in the development of self-feeding skills. Consistently missing 2 or more food groups (Kennedy Krieger Institute criteria) Many children with feeding problems have significant developmental and medical issues in addition to reflux: Developmental Delay Cerebral Palsy Asthma Prematurity Failure to Thrive Autism/Pervasive Developmental Disorder Getting Started A child may be referred to a feeding clinic or feeding program by a parent, doctor or therapist. Before getting started, every attempt needs to be made to alleviate pain related to reflux. It is vital to get consent from your child's doctor to participate in a feeding program to ensure that it is medically appropriate for your child to eat by mouth (i.e. the child can eat without aspiration into the lungs, food allergies have been identified, medically stable). In the United States, all infants and children from birth to age 5 with developmental delays/handicaps are eligible for early intervention services through the local school district or special education department. Many of these early intervention programs provide speech therapy and occupational therapy for children with feeding problems. In addition, many health insurance plans cover speech therapy or occupational therapy sessions for feeding intervention at a community clinic, out patient center or local hospital. Parents may want to explore all of the local options first (Early Intervention Services, hospitals and clinics). Feeding intervention can take weeks or months and it may not be practical to participate in a program in a distant city or out of state. If it is determined that a child requires a more specialized, intensive program, an evaluation by a specialist in the community can provide valuable information to the feeding team and may shorten the length of stay. Even if the primary feeding intervention takes place at a distant clinic, it is likely that a local therapist will be needed to provide follow up services after discharge to maintain skills. On the other hand, some families find that it is necessary to travel to a specific program offering intensive intervention. The inconvenience, expense and effort are well worth it if the intervention results in a lasting solution to a frustrating and serious problem. Finding a Program to Fit Your Child's Needs Many medical insurance plans will pay for feeding intervention and feeding clinics/programs. A feeding clinic/program can save money in the long run if a child is weaned from a tube and doesn't need special formula/supplements. However, it may be necessary to go through a review/approval process to get permission. The feeding clinic will need to contact the insurance company and get approval. This can take a long time and may delay admission to a program for weeks or months. Many feeding clinics have a waiting list for admission as well. It is always helpful to gather medical records and therapist reports prior to the evaluation. Some of the commonly requested reports include: GI test results-Endoscopy, pH Probe, Swallow Study, Milk Scan, Upper G.I., reports/records, growth charts, speech therapy evaluation, occupational therapy evaluation, nutritionist and psychology report. Your child may not have all of these tests and evaluations- just bring what you have. In addition, the clinic may request a diagnostic test or evaluation prior to coming to the evaluation. Many feeding clinics offer an array of services: outpatient clinic (children receive an evaluation followed by individual treatment sessions weekly, monthly, etc.), day treatment (children receive intensive feeding services all day, five days a week), and inpatient stay (children receive intensive feeding services and medical monitoring by a physician 24 hours a day). Usually, children with mild-moderate feeding difficulties can be successfully treated at an outpatient clinic. The inpatient model permits medical monitoring of children with complex medical conditions as well as intensive therapy for children who would benefit from a daily, structured program. In any case, it is important to have long-term follow up services from the clinic or a local therapist with the same philosophy as the clinic. While most feeding clinics provide a multidisciplinary approach, combining medical supervision and developmental/behavioral treatment, there are a wide variety of treatment approaches (see resource list). Some programs such as the Kennedy Krieger Institute, Marcus Institute and Hershey Medical Center adhere to a behavioral approach (a system of rewards and consequences to increase feeding skills and decrease negative feeding behavior). Programs that are more holistic/child-centered (emphasis is placed on parent-child interaction and incorporating the strengths/needs of the child in the therapy) include: Kluge, Children's National Medical Center and Children's Hospital-Richmond. The New Visions Program is a well-known sensory integration therapy program for children with complex oral-motor problems related to motor/developmental delays. Several clinics specialize in the diagnosis and treatment of swallowing disorders, also known as dysphagia. The Kluge Feeding Encouragement Program has a one week and two week intensive tube-weaning program. The director of the Kluge program, Polly Tarbell, reports that 98% of the children they treat have reflux and 50% have had a surgical procedure to treat reflux. Many programs will provide the names of other families who have participated in their program so parents can share their experiences (The Kluge Encouragement Feeding Program provided a list of 25 recent "graduates" of their program.). Doctors and therapists can offer their insights on the different types of programs that are available as well. Once you have contacted several programs and talked with the staff, you can determine which program(s) your child qualifies for. Think about the feeding goals you have for your child and where you think you and your child will have the most success. Members of the Feeding Clinic Team A team of specialists will be working together to evaluate your child. Depending on the program and the needs of your child, some or all of the following specialists will evaluate your child: Physician/Pediatrician/ Developmental Pediatrician Pediatric Gastroenterologist Pulmonologist Behavioral Psychologist Psychiatrist Social Worker Nutritionist Speech Therapist Occupational Therapist Evaluation: Determine a Course of Action The evaluation will usually consist of: a thorough medical history, and history of feeding. A physician will conduct a physical exam and evaluate height and weight. It is likely that one or several specialists (speech therapist, occupational therapist, psychologist) will observe your child playing, self-feeding and being fed by the caregiver. Sometimes, it is requested that parents videotape these activities at home in a more natural setting. It may be important to bring the tools you use at home-familiar cups, bottles, spoons, foods, bibs, etc. You may be asked to provide a record of your child's typical diet for a day-foods eaten, how much, drinks by cup, bottle, tube, amount of fluids per day, etc. A nutritionist may review this information and ask you other questions about your child's diet. Be sure to tell the team about any food allergies and intolerances. Don't harbor any secrets- be clear about any special diets (such as: vegetarian, organic, kosher) and customs in your family (expectations about self feeding, mealtime atmosphere, family rules, expectations about weight gain). Think about what your goals are for your child. Do you want your child to increase his/her intake and reduce dependence on a g-tube? Do you want to wean him/her from a tube? Do you want to reduce gagging/vomiting? Increase the variety of the foods or the texture of the food? Learn to use a spoon? Eat at school, a restaurant or other location? The team will want your ideas. Be clear about what you want! After the evaluation, the team will meet with you and discuss the results. You and the team will determine a course of action that fits your needs and the needs of your child. You will probably have a lot of questions: How long will it take? When will we know that the intervention has been successful? What if my child doesn't like it/ can't tolerate it? Can I stay with my child? Will I be trained to feed my child? Typical Intervention: Some Examples An outpatient-feeding program may take place in your home or in a clinic. A therapist will work with you and your child to meet the goals that have been set. The therapist will feed your child and teach you techniques to try at home between sessions. The intervention may take days, weeks or months. An outpatient day program is more intensive, offering daily, full-day intervention. The child may be fed 3-5 times per day by the therapist with supervised play and intervention in between. This type of program may result in faster results since it is so intensive. However, it is very time consuming to travel to and from a program every day and stay with your child for the program. Some parents stay with relatives or in a hotel to participate in an outpatient program in a distant city. Often, this type of intensive intervention achieves fast results and follow up can take place on a less-intensive basis. An in-patient program is needed for children who require medical supervision or intensive behavioral intervention. The child is immersed in a full schedule of activities and frequent feeding sessions to work on skills. Parents may stay with the child and will be trained to feed the child as well. After an intensive period of intervention (weeks or months), the child is sent home for outpatient services. Real Stories/happy endings. A mother shares her journal of her son's treatment at the Kluge Encouragement Clinic. Her son," John" is a 3 year old with reflux, mild cerebral palsy, and oral aversion with little oral intake since having a tube placed at 17 months of age. She writes: When we started the program, John would take almost all of his nutrition by tube. He will occasionally eat 2-3 oz of pureed baby food but given his history of vomiting (due to ear infections, sensory issues and mild reflux), he has developed a hyper-gag reflex when we try to feed him. Our goal at Kluge is to get him to eat by mouth consistently, to work on feeding himself (which he does not now do) and hopefully, to get him to eat textured foods. At Kluge, the goal is not to teach parents to feed their child, but to teach the child to feed him self. The goal is also to teach the children to eat age appropriate foods and to accomplish some measurable degree of weaning from the tube. I was told that 96% of the children in the Kluge are weaned from their tube within a year of participating in the program. The Kluge Rehab Center is an entire building on the campus of University of Virginia. It is very child-friendly and disability-friendly. The center also has facilities for parents to stay there (the Commonwealth Court) and several hotels near by (e.g. Red Roof Inn, Omni, Marriott Courtyard, Hampton Inn & Suites, etc). The center has a nice gym for Physical Therapy, a special Occupational Therapy room with swings etc., and a playroom, cafeteria and laundry facility. It has a nice home-like feel to it, unlike so many hospital settings. On the first day, John had his first session with the speech therapist, Polly Tarbell. We went to the cafeteria where other children were also having meals. There are several small tables in the cafeteria so that each child has their own space and feeding time. There is a small buffet and salad bar and a large wall full of different foods that the therapists can use for feeding sessions. The cafeteria houses all sorts of chairs, mirrors, etc. to ensure a child's comfort in the cafeteria. A mirror was placed in front of John and he was placed in the high chair and given a toy, which was used as a reward when he did well. He did not want to eat anything and fussed quite a bit (which we understand is normal). He pushed the therapists hand away but after a few attempts, she gave him choices (e.g. the train will go away if you don't take a bite). When that did not work, she would gently take his hand and put it on a sticker on the high chair tray and put the food in his mouth. The sticker is the signal to show that it is time to open his mouth and have some food. Polly Tarbell has a very kind but business-like approach to which John responds well. She is a no nonsense person but at the same time very gentle with her approach. John took about 1 oz. by mouth but did not like it and gagged often, spitting up one time. At noon, he had his "lunch" feed and the steps were repeated. This time, John took 2 oz per mouth and only fought it about 1/2 the time. We felt there was a marked improvement. I think Polly has a very good manner and I am currently feeling very happy about traveling across the U.S. to do this. 3:30 p.m. We returned at 3:30 for his snack. John had some yogurt and ate almost 3 oz. While he still gave some resistance, there was a clear change from his early feeds. He ran eagerly to the chair and was very happy to see Polly. 6:00 - My turn to feed John- ugh - he did not like the food I used one bit - I had the baby food macaroni & cheese - he did not like the texture (a little gritty) or taste. Not a good food for me to start with. BUT he ate 3 1/2 oz but on many occasions I had to use the "hands down on the sticker" trick. He was compliant, putting his little hands down on the sticker and opening his mouth, sometimes fighting it. I held his hands down, feeling horrible since it goes against every grain in my body to do this, and made him eat. The goal over the next two days is not to teach him feeding is fun, but rather to help him get over his severe gagging reflex. John normally will gag when anything is put near the back of his tongue or with ANY texture. The final result of the feed was some gagging at the beginning and some tears but he ate the 3 1/2 oz. I am feeling like I am violating every rule of "don't make the feeding experience aversive" but I cannot begin to tell everyone what a significant reduction in his gagging I have seen. To give you an idea, John used to gag with almost every bite (even as late as this morning's feed!). His gagging now was still there but NOT every spoonful like normal. Feeling a little anxious about this type of feeding but I have not tried it before so I am willing to give it a try... but I am desperate to get him over this as he gags and vomits with the slightest cold, feed etc. We'll see. DAY 2 - LIFE IS LOOKING UP 8:30 - John's first feed with Polly - We ate in the cafeteria in a high chair and a train toy to distract him. Food was Baby Food #3 - Cinnamon Granola mixed with a little half and half to make it a little smoother. Feeds with Polly last no longer than 15 -20 minutes. John ran up to the chair, hopped in it (I was sure he was going to have post-traumatic stress syndrome from our feed the night before but he did not!) happy to start his feed. He ate 3 1/2 oz of mixture with minimal gagging. When he would not put his hands on the sticker on the tray, we'd take his train away but give it back as soon as a bite was completed (even if the "bite" was not a good one or "voluntary" one). My mom is with me and she is finding this hard to believe that our John is actually starting to eat like a real little guy. Worried to get too excited. Polly told me that the first 1-3 days are the "Honeymoon" period... We'll see. 9:30 - 10:00 John has OT - he is working on lateralization of his tongue, sensory issues (he does not like to touch food), etc. O.T. is very good. O.T. had a small net that she gave John to fish out things from box, asking him to take out specific things (e.g. by color, item, etc). I have seen so many therapists and it is refreshing to see the therapists notice things in 2 seconds versus 2 years. I am feeling so happy we are here. Noon - LUNCH - John ate 4 oz of yogurt with maybe one gag. He opened his mouth and licked his fingers 3-4 times and started moving his tongue out more as if to lick his bottom lip. He has never licked his fingers or his lip to get food off. Normally, he fusses and sticks his hand out for someone to wipe off food. 1:30 - TUBE FEED - 4 oz only of blender-pureed food. This was a reduction from our 6 oz of food we normally give him at lunch. Wondering how much weight he is going to lose. He was weighed the first day. Weights are taken Monday, Wednesday and Friday. 3:30 - SNACK -John ate yogurt again but a different flavor (blueberry) with no incident. Cannot believe he is doing. Occasionally he'd have to have his train taken away and put his hands on his sticker on his highchair tray but overall, he actually enjoyed this feed. He opened his mouth, smiled and played appropriately. Wow... Polly has an amazing rhythm in feeding him. No one could have adequately explained this to me on the phone. She is quick, direct and makes it clear to John that his role is to eat. Now that his gag is unbelievable almost entirely gone for this type of food type, we will start moving onto more textured items and foods in the days to come to start teaching him how to chew, which he has NO idea how to do.... 6:30 feed - John ate for me like a champ. I had tears in my eyes. I truly cannot believe the progress and am trying not to get too excited. Yogurt! Real food! This may not sound like a lot to some of you but John would gag and vomit from us just trying pureed #1 baby vegetables ... Wow. Day 5. John is doing great and loves eating. Who'd think this would happen so quickly. Now he is going into our grocery bags and grabbing things out to open and taste (e.g. Fritos, cookies, etc.). This weekend we're on our own but I look forward to having this time with John. I feel he trusts me feeding him and I feel I can trust him to let me know when he has genuinely had enough. This has been an unbelievably, wonderful week. John has now averaged eating around 22+ oz of food a day for the last two days. Week two: There were no major changes. I did all feedings and we were doing so well, I left the program early. John went from not tolerating virtually any oral feeds to eating about 25 oz. by mouth by the first weekend! Foods are still pureed but they are age appropriate foods. It is much easier to get calories into him this way. He is now eating about 80% of his caloric needs by mouth. If he keeps up, we may have him off of tube in a matter of months! We are now working on increasing volume and textures. From: John's Mom A PAGER mom, Stephanie Gillette, shares her experiences with feeding clinics. My daughter Rebecca will be 6 years old on February 5th. She was given supplemental feedings with an ng tube since the age of 6 months and got her g-tube along with a fundoplication at the age of 10 months. She had a repeat fundoplication at 22 months of age. We were at Kennedy-Krieger when Becca was 14-15 months old and we were with a very similar program at Children's Hospital in Richmond, VA when she was 27-29 months old. We had success and failures with each program. We have been through two formal feeding programs plus other therapies locally and for the past 11 months we have tried to pretty aggressively wean her from the tube for good. The first four months off the tube she maintained her weight but did not gain and then all of a sudden she started to gain weight. She has gained two and a half pounds since last June and this past Friday her button was removed. We thought her doctor was going to wait one more month, but he decided that one more month wouldn't make a difference. So much to our surprise we drove home with a gauze pad instead of a button. We are so proud of her and how hard she has worked after 5 years of tube feedings. I just wanted to share our good news at this latest triumph. It has been a long road and I think I will always worry about her, but for the moment everything is good. Becca's mom believed that a feeding clinic is helpful when reflux is fully controlled and the child is medically stable. She also believed that children have to be at a "critical period"-mentally, physically and developmentally ready to benefit from intervention. She would be happy to speak to other parents about her experiences. She can be reached at 540-720-7445. Marianne Hargrove offers her story about her son Jonathan. At 12 months, her son was unable to drink from a cup or bottle and he was spoon-fed Pediasure. She writes: It was recommended to us by our Gastroenterologist that we contact Kennedy Krieger Institute. We had tried different therapist in our area (New York State) without any real luck. After working with one therapist for 9 months, she still couldn't get him to eat. Distraction was also a major problem for him. Well, we contacted Kennedy a year ago. Since then, he has been evaluated and was taken into the program. We were there for 8 weeks and they did in that time what therapists here could not accomplish. Jonathan eats all that is presented to him without a fight. He can eat in front of other people and not be bothered by them. The biggest accomplishment is that he can drink from an open cup and from a cup with a straw and he ENJOYS it now! He still has texture issues and we are still chopping/pureeing his food. But his vomiting has gone way down, and I believe it is because table food is thicker than baby food and it doesn't come up as easily. We will be back at Kennedy next week for a check up and a re-evaluation of texture. Jonathan still has episodes of vomiting but not nearly as much as it used to be. My carpets are staying much cleaner these days. The reflux tends to act up when he gets sick as I'm sure happens in most cases. I can only hope that he eventually will grow out of it or learn how to handle it better. Marianne can be reached at dragboat@optonline.net Outcome/Follow-up Many children are discharged from a feeding clinic with a vast improvement in their feeding skills. Some programs claim that 85-90% of the children have attained the goals that were set. Remember that the goals are very individualized for each child and may range from increasing textures of foods to total weaning from a gastrostomy tube. Many children require continued follow-up for months or years to maintain their skills. Dr. Katz, medical director of the Kennedy Krieger Institute tells parents that the clinic is the "intensive care unit of feeding". After intervention, the child is out of danger and on the road to recovery. The child may not come out of "intensive care" fully recovered, and he/she may never fully recover, but he/she is better off than when you started. Feeding Clinics-By State CO. Rose Pediatric Feeding Center, Denver, Co., Director: Dr. Kay Toomey, 303-522-4455. (Temporarily closed until 2/02). D.C. Multidisiplinary Feeding Disorders Clinic, Children's Hospital National Medical Center, Washington, D.C., Psychiatric Director: Irene Chatoor, M.D., Medical Director: Benny Kerzner, M.D., Gastroenterology, 202-884-2057, www.dcchildrens.com. Outpatient Clinic, Feeding Evaluation Clinic. Whole-child philosophy GA. Marcus Institute, Feeding Disorders Program (Affiliate of Kennedy Krieger), Director: Cathleen Piazza, Ph.D., 1605 Chantilly Drive, Suite 150, Atlanta, GA. 30324, 407-727-9400, www.marcus.org. Day treatment, Feeding Evaluation Clinic Behavioral approach. MD. Kennedy Krieger Institute, Feeding Disorders Program, Medical Director: Richard Katz, M.D., 707 North Broadway, Baltimore, MD. 21205, 410-502-8498, 800-873-3377, kennedykrieger.org. Inpatient Program, Outpatient Program, Feeding Evaluation Clinic. Behavioral approach. P.E.P.P.E.R. Clinic, Mt. Washington Pediatric Hospital, 1708 West Rogers Avenue, Baltimore, MD. 21209, Medical Director: Ajoke Akintade, M.D., 410-578-8600, Ext. 398, www.mwph.org. Inpatient Program, Outpatient program, Day treatment, Feeding Clinic. This program offers comprehensive services to medically fragile children, and children with a variety of medical and developmental disorders. N.C. Carolina Pediatric Dysphagia, 1110 Navaho Drive, suite 103, Raleigh, N.C. 27609, 919-877-9800, info@feeding.com. Speech therapy Clinic Diagnosis and treatment of swallowing disorders. N.J. St. Joseph's Hospital, Center for Feeding and Swallowing, Director: Peggy Eicher, M.D., 703 Main Street, Patterson, New Jersey, 973-754-4300. Feeding Evaluation Clinic, Outpatient services. OH. Children's Hospital Medical Center of Cincinnati, Interdisciplinary Feeding Clinic, Aerodigestive and Sleep Center, 3333 Burnet Avenue, Cincinnati, Ohio, 45229, 513-636-2828. www.cincinnatichildrens.org. (Website also has extensive resources on g-tubes and enteral feeding). Inpatient Program, outpatient program, Feeding Evaluation Clinic, comprehensive services. Developmental approach. Freed Biolectric Treatment Center, c/o Respiratory Care Department, University Hospitals of Cleveland, 11100 Euclid Avenue, Cleveland, Ohio 44106, 216-844-7283, Director: Marcy Freed, S.L.P. Outpatient Treatment Clinic. Experimental treatment of swallowing disorders. PA. Children's Hospital of Philadelphia (CHOP), Children's Seashore House, Pediatric Feeding and Swallowing Center, 3405 Civic center Blvd., Philadelphia, PA. 19104, Medical Director: Dr. Diane Barsky, 215-590-7500. Dysphagia and Swallowing Disorder Program. Feeding Evaluation Clinic. Outpatient Services. Hershey Medical Center/Pennsylvania State Children's Hospital, Feeding Evaluation Clinic, Intensive Treatment Program, Oral-Motor Clinic Hershey, PA. 717-531-7117, website: www.hmc.psu.edu, feedingprogram@hmc.psu.edu. Feeding Evaluation Clinic, Outpatient services, Inpatient services, Intensive Treatment Program. Behavioral approach. TN. UT Boling center Feeding Clinic, 711 Jefferson Ave., Memphis, TN. 38105, 901-448-5777, www.jerico.org., Le Bonheur Children's Medical Center, www.Lebonheur.org. Outpatient services, Feeding Evaluation Clinic. TX. Children's Medical Center of Dallas. Feeding Disorders Program, www.childrens.com. Speech Therapy Clinic. Swallowing disorders. Texas Children's Hospital-Houston, Texas Children's Feeding Disorder Center, Houston, TX. 832-822-3032, www.texaschildrenshospital.org. Outpatient Clinic. Oral-motor/behavioral approach. VA. Children's Hospital of Richmond, Pediatric Feeding Disorders Program, Richmond, VA., 804-228- 5818, childrenshosp-richmond.org. Clinic, in-patient, outpatient. New Visions Feeding Clinic,Director Suzanne Evan Morris, Ph.D., CCC, 1124 Roberts Mountain Road, Farber, VA. 22938, 434-361-2285, www.new-vis.com. Feeding Evaluation Clinic, Outpatient- 1 week and 2 week Family Program. Whole-child, Sensory Integration. University of Virginia, Kluge Children's Rehabilitation Center, Encouragement Feeding Program, Polly Tarbell, M.Ed., CCC-SP, Lead Therapist, 2270 Ivy Road, P.O. Box 800232, Charlottesville, VA. 22908, 804-924-5272, 800-627-8596 X 3-6186. Day treatment Program, Feeding Evaluation Clinic. Whole-child/Sensory Integration Approach. W.V. West Virginia Feeding and Swallowing Clinic, 304-293-4692 Feeding Evaluation Clinic Swallowing disorders Note: This is by no means a comprehensive list. Please inform PAGER of any other feeding clinics and services that are appropriate for children with reflux. Beth, I may seem inconsistent on the descriptions of the clinics…I just used the terminology the programs used. Some called themselves an out patient clinic, others called themselves a program. Usually, a clinic just performs an evaluation and then refers to a program for the actual services. Some clinics also offer the intervention. Confused? It is all terminology. This article is reprinted with permission of Kris McNally Subject: Treatment Questions to ask By Kris McNally Hi Everyone- I know there is always a lot of discussion amongst the group about what is the best therapy services or treatment programs available for our children. As I have posted several times before, my son went through both a very rigid behavioral approach at the Kennedy Krieger Institute as well as a Family Mealtime Program at New Visions with Suzanne Morris. In our experience Kennedy Krieger's program took a strict behavior modification approach to feeding issues. Children come in with a variety of issues and needs, but they all seem to receive the same treatment. "Modify the behavior" through a strict feeding protocol and get them to increase their intake regardless of skill or comfort level. Our sons underlying issues were never addressed, so he still experienced a lot of discomfort and fear around food. Behavioral psychologist took the lead role in treatment. Therapists took a much less involved role. He did increase his intake of food and decreased his gtube feeds, (only with a reward of TV for every bite) we followed this for almost 10 months. THIS DID NOT LAST because he never received adequate treatment to increase his oral motor skills and did not receive any treatment to decrease his sensory based problems with foods, which had caused his anxieties and fears around eating. He ate, but he still hated it and could only swallow purees. Seamus had much greater success when we treated him as a whole child and addressed all of his issues including sensory, oral motor, and experiential based problems. At New Visions, they did a thorough evaluation of his feeding issues and closely examined the underlying causes of his eating problems. They identified the obvious-medical issues but really focused on issues of helping him to achieve GI comfort, reducing anxiety and stress associated with food, by working on mealtime relationships. A treatment plan was addressed for his oral-motor skills as well as his sensory issues. Seamus and I became partners, instead of opposing forces. The road was long, but within a year he had dramatically improved and LOVED food and enjoys eating a huge variety of nutritious foods with a variety of tastes and textures. I wrote an article with Suzanne Morris regarding questions to ask yourself when seeking treatment services. The most important thing is to be well informed and find the best match for your child. Below are some questions/excerpts for the article. I will also include the article as an attachment, in case it is not on the website yet. Hope this is helpful. Kris McNally (mom to Seamus, Katrina & Liam 6 yrs and Aidan 2 1/2 yrs) Questions to Ask Yourself Questions that we ask ourselves can provide amazing insights that shift or deepen our understanding of our child’s feeding issues. We have the choice of carrying self-judgment into our most personal questions, or we can ask them with the intent of developing a clearer understanding of factors that contribute to how our child approaches eating and mealtimes. Take some time to consider the following questions. Enjoy the questions and let the answers come to you in their own time. When we pose a question, we invite the answers to come from our inner memory and knowledge. Sometimes insight and answers come to our awareness quickly; at other times they emerge more slowly through flashes of memory and knowing. The resolution of feeding issues takes time. There is no need to rush the process of asking yourself the questions that will help you understand what you would like for your child. Some children communicate their distress and discomfort around mealtime in very unique ways. They may gag at the sight of food, resist coming to the table, scream when they are placed in their high chair, vomit, or refuse to open their mouths. If your child has this type of reaction to food and mealtimes, you or therapists may have described your child as having “negative behaviors” or behavioral issues. You want to gain more insight into these behaviors and the messages that your child is attempting to communicate. · When, how and why did these behaviors start? · Did they begin as a coping mechanism? · did my child experience discomfort or pain that became associated with eating? · Did the behaviors become more pronounced as mealtime became more stressful? · Has fear and distrust developed around feeding and mealtime? · Is my child afraid of choking? · Is my child afraid of dealing with uncomfortable textures and tastes? · Is my child afraid of being told how and when to take each bite? Ongoing medical issues, physical coordination and sensory processing skills contribute strongly to children’s comfort and skill with eating. Explore your knowledge and insight with questions that address these issues at mealtimes. · Would my child experience less stress and fear at mealtimes if he had better oral-motor skills for drinking, chewing or swallowing? · Do I push my child to eat faster or eat a larger amount of food than he can physically handle in a 30-45 minute mealtime? · Do I reduce overall stressors at mealtime before I deal with my child’s oral motor skills for eating and drinking? · Does my child associate pain and discomfort with food and eating? · Does my child have sensory integration issues? · Does my child experience discomfort related to sensory defensiveness or sensory overload? · How are sensory issues affecting feeding choices and behaviors? · How can these be addressed so that my child is ready and comfortable when eating? · Does my child like to eat and drink? If not, why? Our personal beliefs about food and mealtimes guide the way we feel and respond to our child’s feeding challenges. Children are extremely sensitive to our feelings and actions. They learn to adopt our beliefs and attitudes and incorporate them into their own responses to mealtime. If we are feeling stressed, they often experience more stress. If we are anxious or worried, they feel less secure and less relaxed at mealtimes. When we push them to eat, they often push back. We often need to become aware of our own beliefs and behaviors and make changes in these areas before we can expect our children to change. Consider the following questions and the way they influence your feelings and actions in responding to your child’s feeding issues. · How do I feel about food and eating? Do I enjoy eating and value my own mealtimes? · Do I feel worried, anxious, sad or unhappy about the way my child eats? Why do I feel this way? What do I think would happen if I didn’t feel this way? · Do I feel stressed when I am feeding my child? Why am I feeling stress? How does my stress contribute to mealtimes with my child? · Do I frequently remind my child to eat or to finish the food that is on the plate? Why do I offer reminders? What do I believe would happen if I didn’t remind my child to eat or drink? · Do I serve only foods I know my child will eat? What do I believe will happen if I offer new foods? · Do I offer special foods, favorite toys or videos to get my child to eat? Why do I do this? What do I believe would happen if I didn’t offer these special rewards for eating? · Do I enjoy meals with my child? · Do I feel good about my child’s eating and mealtimes (even if I would prefer a different type of eating or drinking)? We are more likely to find the therapist or program that fits our needs if we are clear about what we want. Many people become unhappy when they don’t get what they want. They try to protect themselves from unhappiness by giving up wanting. They wander through life depending on luck or whatever comes along. When we learn that we don’t have to be unhappy if we don’t get everything we want, we can ask for anything that we feel would support our child or us. A want is really an intention. Intentions are like strong signals that provide some direction in our lives. When we are clear about what we want, we are also clear about what will support that desire. We make happier and wiser decisions and recognize people and opportunities that can help us move toward what we want. Ask yourself the following questions and trust what you know about what you already know and what you want for yourself and your child. · When is my child ready for feeding or comprehensive oral motor therapy? · What are my priorities for my child (i.e. building trust? Increasing gastrointestinal comfort; increasing sensory comfort; developing oral motor skills; increasing food intake). · What type of intervention would help my child build positive experiences with food and mealtimes? · What type of therapy do I want to find for my child? · What questions will help me find appropriate therapy services? · What can I do at home that will help my child develop positive mealtime attitudes and skills? · Do I really need a therapist for everything? Questions to Ask Individual Therapists Questions can help you identify individual therapists or agencies that will help you learn more about your child and support what you want for your child and family. The following questions will enable you to gather information to help you decide whether you wish to schedule a more in-depth evaluation or therapy. · Do you do an overall assessment to identify related medical issues (i.e. gastrointestinal, respiratory, cardiac, neurological, sensory, oral-motor) that influence my child’s eating and drinking? · Do you make appropriate referrals to other professionals or agencies for these evaluations? · What training and education have you had to work with feeding and swallowing problems of children? · What specific courses have you taken? Who have you studied with? What books or authors have you found helpful, as you’ve developed your own approach to children with feeding issues? · How long have you been working with children with feeding problems? · What specific background do you have to address my child’s key issues? · What type of approach do you take with children? · Do you or your program identify the skills that my child already has and work to enhance my child’s existing abilities? · Do you include parents in the development of feeding programs? Specifically, how do you work with parents and other family members? · How do you help parents incorporate therapy ideas at home? How do you work with parent feedback about the appropriateness of specific activities at home? · How will you help me develop a positive mealtime experience so that my child develops a healthy relationship with food, wants to eat and enjoys food? · What different types of therapy or services would benefit my child? Questions to Ask a Feeding Team Some hospitals or clinics address the feeding issues of children and families through the coordinated evaluations and recommendations of a team of feeding professionals. A child might be evaluated by a core group of therapists or by a coordinated medical team that includes specialists in gastrointestinal, respiratory and neurological problems. Psychologists, dietitians and social workers are included in many feeding teams. Theoretically this can be an efficient way of gaining an integrated treatment program that addresses a child’s multiple issues. In reality, this is often not the case. Programs, like individual therapists, can have strong biases about the best way to address feeding issues in children. For example, if the program does not consider the validity of sensory integration issues, an evaluation by an occupational therapist with training in sensory processing will not be included. Some programs set specific goals for the child to eat larger amounts or a wider variety of foods before addressing gastrointestinal issues such as reflux or poor gastric emptying. If gastrointestinal comfort and readiness for increasing the quantity of food are not present, a program to increase food intake can increase the physical pain and discomfort that a child associates with eating. The long-range impact can be seen in the child’s increased resistance to eating. Some feeding teams evaluate the child’s abilities by having several team-members work simultaneously with the child. For example, the occupational therapist and speech-language pathologist might work together to explore how a child’s seating system or self-feeding skills affect oral movement and the ability to eat or drink efficiently. Other programs rely on the individual assessments of team members. Teams also work in different ways to coordinate the information gathered by each individual. No single approach can be labeled the best way to function as a team. However, it is important for parents to ask questions about the team, it’s priorities and know what to expect from the evaluation or treatment recommendations. The following questions will help you to learn about the feeding team that you are considering and decide whether its approach meets your needs. · How will your feeding team diagnose and address my child’s medical issues prior to setting specific eating goals? · Will you conduct an extensive multidisciplinary evaluation of my child in order to create and implement the most effective individualized treatment? · How will your evaluation and treatment of my child take into consideration any medical issues that are present? · How will your evaluation and treatment of my child take into consideration any motor coordination issues that are present? · How will your evaluation and treatment of my child take into consideration any sensory issues that are present? · How will your evaluation and treatment of my child take into consideration any oral motor issues that are present? · How will your evaluation and treatment of my child take into consideration any experiential issues that are present? · which professionals will take part in evaluation of my child? · Which professionals will take part in treatment of my child? · How much time per day will my child receive therapy to improve sensory integration skills? · How much time per day will my child receive therapy to improve oral motor skills? · How much time per day will my child receive therapy to address experiential (behavioral) issues? Who will be involved? · What is the philosophy of your overall program? · How do you define or describe your success rate with children? · How is your philosophy reflected in the way you will work with my child? · How will you set goals for my child? · How and when will these goals be reevaluated and modified? · What approaches will you use to help my child recognize hunger and fullness? · How will you measure my child’s progress in the feeding program? · How will you establish specific mealtime goals for my child? · What is the relative importance in your program of increasing the amount of oral intake of solids and liquids? · How will your program increase the variety of foods that my child learns to eat? · How will you evaluate my child’s readiness to transition from the tube to oral feedings? · How do you work with parents and other family members in your program? · How will you help me incorporate at home what I learn in your program? · What type of follow-up and support services do you offer to parents in your program? |
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