Kartini Clinic is a medical and mental health treatment facility dedicated exclusively to the treatment of eating disorders in children and young adults. Kartini Clinic take a medical approach to the treatment of eating disorders such as anorexia.
Over the past 20 years (yes 20!) of re-feeding children with eating disorders, we at Kartini Clinic have learned some tips and tricks, which I thought I would pass along. Whether you are re-feeding a child at home or in a clinical setting, I hope these pointers can be helpful to you.
Remember: even though life stops until you eat and that without weight restoration you will get nothing, there are ways to help make the process less painful and more supportive. At Kartini Clinic we operate in a “peaceful, friendly, no-negotiation atmosphere” and recommend you do the same.
Knowing that negotiation is not possible will actually make your child less anxious. If they think there is the possibility of negotiating even a teeny bit on behalf of the eating disorder, many kids will beat themselves up if they don’t try. Negotiation, or the possibility of it, will force them to try and bargain with you at every turn. They will be miserable and you will go crazy.
So when is compromise useful and fair?
Example: “Can I listen to hip hop music during lunch instead of classical music as a distraction?” Answer: Yes. Such a compromise, if it helps your child eat in a reasonable amount of time is cheap at twice the price.
Example: “Can I save half of my lunch sandwich and eat it at snack?” Answer: Emphatically no. Pushing food off until later is a common eating disordered behavior. “Later” either never comes or is miserable.
Example: “Can I skip my evening snack and eat it tomorrow? I promise, promise, promise I will.” Answer: Certainly not.
What are the tips and tricks, courtesy of experienced Kartini staff?
1. Set the table, let them put flowers on it; make the food environment less grim (Dr. O’Toole)
2. Always eat with them, and never less than they are eating. No one likes to be stared at while they eat and others do not. (Dr. O’Toole)
3. Help them identify the most difficult food on their plate and eat it first (Dr. O’Toole).
4. When bringing food to the table, always make their plate the last one you put down, then sit down and do not get up for any reason until they are done (Jade Buchanan, Clinical Director).
5. Either check napkins at meal’s end or eliminate them (Jade Buchanan).
6. No dogs roaming around the room. Too easy to “drop” food. (Dr. O’Toole)
7. Don’t eat in the car ( Dr. Moshtael)
8. Voice tones are important…. Keep calm and soft-talking as if this is not such a big scary deal to eat (Amy Stauffer, milieu manager)
9. Food rolled up in a tortilla looks smaller and easier to eat (Amy Stauffer)
10. Fun activities at the table could be toys set out that they put next to their place mat to feel supported... drawing paper instead of table cloth.... Personal supportive things set at their personalized place setting ... Telling stories is great distraction.... (Amy Stauffer)
11. Spinach as a vegetable cooks down into a tiny amount and makes the plate look less full (Dr. Moshtael)
12. Absolutely refrain from commenting (or allowing others to comment) on “how much food” it all is (Dr. O’Toole).
13. Sometimes we'll have the kids pace after us, taking bites at the same time so we role-model eating for them (Josh Barrett, milieu therapist).
14. Laughter and compassion go a long way. (Josh Barrett)
15. Give them sufficient time prompts that they can track their progress, but not so many that it stresses them out. Typically I give one every 10 minutes, half way through, 5 minutes left, 2 minutes left, 1 minute left. (Josh Barrett)
16. Have a mantra/positive affirmation they can repeat (e.g. "not finishing is not an option," "The meal plan is just right for me" (Josh Barrett).
17. Understand that what might have worked for a past patient, will not necessarily work for a new one. I have found that it is helpful to approach each child who is reluctant to eat with an open mind, not assuming that a template will work for them. (Ellie Franco, milieu manager)
18. Keep a consistent structure at meal times. (Ellie Franco)
19. No judging voice tones or pressuring demands. (Amy Stauffer)
20. Set reasonable meal-time limits and stick to them. If they cannot/ will not finish in a timely fashion, have them drink a Boost or an Ensure to make up the difference at the end of the expected time (30 minutes for breakfast and lunch, 15 minutes for snack, 45 minutes for dinner). Do not sit at the table for hours (entire team).
And now about some tips or tricks of your own, dear parents and colleagues?
Have you ever heard of the ancient Chinese book called the I Ching, also known as The Book of Changes? If you were young during the 60’s and 70’s, I bet you have, otherwise, probably not. Sources of inspiration, when doing really complex and challenging things, such as re-feeding a sick child who resists and resents your efforts, can come from unexpected places. For me, this week, that source of reflection was the I-Ching, as I remembered a story in it about a fox.
Wikipedia says: “The I Ching also known as Classic of Changes or Book of Changes, is an ancient Chinese divination text and the oldest of the Chinese Classics. Possessing a history of more than two and a half millennia of commentary and interpretation, the I Ching is an influential text read throughout the world, providing inspiration to the worlds of religion, psychoanalysis, business, literature, and art.”
The wisdom of the I Ching was consulted by tossing a series of sticks or (later) coins whose shape, created by their fall on the ground, correlated with specific combinations of six straight or broken lines. Each of these “hexagrams”, which are catalogued in the I Ching, referenced a parable. The parable-image I am writing about today is number 64 called “the little fox: before completion”.
Treatment of a young person with an eating disorder is not easy. Treatment needs to be planned, consistent and seen through to the end. It is exhausting. It can be demoralizing. It is necessary.
I have now treated thousands of pediatric patients with eating disorders. I have begun to feel that I know how this particular human condition behaves: how it robs, how it tortures, how it deceives and endangers. When our team engages alongside the child’s parents in battle against the illness, against the wasting, trying to wrest a child from its grasp, everyone is energized, even when they are scared. Lines are drawn, plans are made. And if you think that re-feeding a reluctant, angry and frightened child is easy… well, then you’ve never tried it! There will be no thanks. You will have to fight your ground every step of the way, but take heart: things will get better. Your child will get better!
It is precisely when things get better, though, that the eating disorder engages you in its final deception. Weary, you begin to ask “are we done yet?” And the understandable desire to "be done" takes us to a place where we lose sight of the actual end game: “state not weight”. Rather than any particular weight, the state of good health is the goal: well-nourished, medically restored, back in school, socially engaged and happily active.
Sometimes these things follow on naturally from full weight restoration, but -- as many parents can tell you -- sometimes they do not. Psychological recovery (which you will not achieve without weight restoration) is as important as physical recovery, and not always does improvement in physical appearance denote healing of the heart!
The desire to be done, to “just go back to normal”, has caused a problem for many, many families who -- convinced “it will be ok” -- have ended treatment a bit too early, a bit prematurely and then been stung by the rapidity of relapse.
Ironically, insurance companies, once bastions of misinformation about the (non)importance of weight restoration to recovery, now lean heavily on programs and on parents to “be done with treatment” once the weight comes back, once they’ve “gained enough”. At that point they frequently refuse to authorize care. Never mind the child’s psychological devastation; they “weigh enough”.
I watch that temptation to end treatment just a little too soon. I sympathize with the parental exhaustion, the yearning for normalcy and yes, the wishful thinking. Yet it is still my job to warn against it, no matter how unpopular the view.
And I think about the parable in the I Ching of the little fox. Listen: “Before ending: success, if you work hard for it. The little fox tries to cross the frozen river, but gets its tail wet before it can finish crossing the ice. No goal is favorable now, if you seek only the easy way. The fox crossing the frozen river must be cautious (this is an old Chinese proverb). If he tries to rush to the end he will fall into the water. Our affairs cannot be rushed to completion.”
The longer I treat children with eating disorders, the more I begin to doubt the usefulness of exact nomenclature.
In 2000, at the founding of our Kartini Day Treatment Unit, now called Kartini Partial Hospitalization Program, nearly 80% of all the patients we saw carried a diagnosis of anorexia nervosa (correct, I think), of which the overwhelming majority had the restricting form. This may have been partially an artifact of the age of the patients we treated (children and adolescents) in whom this eating disorder is the most common kind, but I think the fact that today we also see a large number of children with the diagnosis ARFID (avoidant restrictive food intake disorder) represents a shift in the consciousness of general physicians, dietitians and therapists towards a more advanced understanding of weight loss and poor growth in childhood.
In medical terminology, children who lose weight, eat poorly and do not grow well are referred to as having “failure to thrive” (FTT). Volumes have been written in the general pediatric literature about FTT and its various causes, but the mnemonic I was taught in residency was “heart, kidney, mothers, others”.
Problems with the “heart” or “kidney” are relatively easy for medical providers to rule out, but “mothers”? Although there certainly are cases of child neglect—and we do see them—this is a rare cause of FTT. In retrospect, “mothers” as part of the mnemonic probably reflected the general tendency to blame parents for their child’s illness when the cause was unknown. Today I would say that the cause of FTT is mostly “others”, meaning a whole range of conditions that can interfere with growth and development. More about that in a moment.
One of the goals of the DSM-5 (Diagnostic and Statistical Manual, 5th edition) was to raise awareness of the fact that children were not “miniature adults”, and as Dasha Nicholls, British eating disorder specialist so aptly put it at the end of the last decade, “children into DSM don’t go.” Children who carry a diagnosis of anorexia nervosa may not exhibit all of the features of the adult form of the illness. This is, in fact, common in pediatric diagnoses of all types: rheumatoid arthritis, leukemia, depression, anxiety, sepsis and many more. The creation of the term ARFID was meant to acknowledge these differences.
According to the DSM 5 ARFID is defined as "an eating or feeding disturbance (e.g., apparent lack of interest in eating or food; avoidance based on the sensory characteristics of food; concern about aversive consequences of eating) as manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one (or more) of the following":
Significant weight loss (or failure to achieve expected weight gain or faltering growth in children).
Significant nutritional deficiency.
Dependence on enteral feeding or oral nutritional supplements.
Marked interference with psychosocial functioning.
The disturbance is not better explained by lack of available food or by an associated culturally sanctioned practice.
The eating disturbance does not occur exclusively during the course of anorexia nervosa or bulimia nervosa, and there is no evidence of a disturbance in the way in which one’s body weight or shape is experienced.
The eating disturbance is not attributable to a concurrent medical condition or not better explained by another mental disorder. When the eating disturbance occurs in the context of another condition or disorder, the severity of the eating disturbance exceeds that routinely associated with the condition or disorder and warrants additional clinical attention.
ARFID does not, in my view, refer only to selective eating, for example. Just look at the examples listed: apparent lack of eating or interest in food (this can be the appetite suppression of depression, malignancy, trauma, or medications prescribed for ADHD (oh yes, we see lots of this!) or cancer; avoidance of food based on sensory characteristics (such as selective eating); concern about aversive consequences of eating (such as food phobia also known as functional dysphagia). But all of these examples are characterized by significant weight loss and/or failure to gain weight during growth, nutritional deficiency (not defined), and/or dependence on nasogastric feeds or constant liquid feed replacement and – importantly -- interference with psychosocial functioning. And to make the diagnosis, the patient cannot be thought to have anorexia nervosa or bulimia nervosa.
So what is the difference between ARFID and FTT? Basically none. One is a medical term and one a mental health term. Or put another way, if you have one of the many diagnoses subsumed under ARFID, you will fail to thrive.
And as for psychosocial functioning, sharing meals is one of the glues of society everywhere. Our obsession with weight control has sometimes obscured this basic fact, but children need to be able to eat socially with their family and friends. And failure to do so can be one of the early signs that there is a problem.
Thanks, I believe, to a recent heightened awareness of the importance of adequate weight gain in childhood and adolescence, children with any of the conditions included under the term ARFID are beginning to appear in our practice in increasing numbers. And we welcome them. Their successful treatment is one of the most gratifying things that we do.
So back to my opening statement that the longer I practice, the less important an exact nomenclature seem. Why would that be? Well, because the treatment for all of these things is the same, or very similar: ordered eating in a peaceful, age-appropriate environment with providers who understand how challenging this can be, yet who are not afraid to use nasogastric tubes where needed to reverse the consequences of malnutrition, and who understand the biology of growth and development and the importance of normal psychosocial functioning.
Because of the medical challenges associated with refeeding children with some forms of ARFID, I have heard an occasional mental health colleague wish for the days when all patients had anorexia or bulimia. But at Kartini Clinic we say, “ARFID? Bring it on! We know what to do.”
It's funny what one gets criticized for. Recently a couple of young patients have let me know that some other eating disorder providers in our community have tried to steer them away from Kartini Clinic because “Kartini Clinic just shoves a tube in everyone”. You can imagine this was rather startling to hear. And -- goes without saying, I hope! -- quite untrue.
The history of nasogastric (NG) tube use at Kartini Clinic is this: on our pediatric inpatient unit we have always been able to use nasogastric tubes when feeding orally was not possible, just like any other doctor in the hospital. Dr. Moshtael and I are both Board certified pediatricians and the nurses at our partner hospital, Randall Children's Hospital, are nothing short of amazing, both with the kids themselves and with all the paraphernalia of the hospital: IVs, telemetry heart boxes, wheelchairs and, yes, NG tubes.
As far as I know it’s quite rare in Portland (and elsewhere) for a PHP programs to have dedicated pediatricians and pediatric nurses always on site to render medical care when needed. We have always had them, and they are one of the things that distinguishes our treatment center from others. In 2000 we developed our Day Treatment Unit (DTU), which was a valuable step-down program for kids who had to be hospitalized, but we could only accept kids into the DTU who were able to eat. In 2015 we greatly expanded our footprint and built out a specially designed facility for our entire clinic, including the DTU, now called Partial Hospitalization Program (PHP).
Sherrill Gandsey, RN, a dedicated, experienced pediatric eating disorder nurse joined us in 2015 and helped make it possible for us to keep kids out of the hospital who formerly would have stayed there for some time before transfer to PHP. That’s right, our use of NG tubes keeps kids out of the hospital! This now includes kids with borderline medical instability, children with ARFID and failure to thrive as well as those who needed a NG tube. For us, this is a great clinical improvement: now we can keep children who need a feeding tube in PHP, sleeping in their own bed at night, and staying connected with family and friends and receiving all the mental health interventions so problematic to render in the hospital. Our mental health staff has created a child-friendly, warm and creative milieu for the PHP. Gone were the days when children with NG tubes were ostracized as “too sick” to join others in play. And surrounded by their peers in an atmosphere of support, it’s easier for our kids to learn to eat again and to get rid of “the tube” more quickly.
So when do we use NG tubes at Kartini Clinic and why? Basically, regardless of underlying diagnosis, we use a NG tube to save the life of a child. That is why we are not afraid to do it. In the past, I have met many patients who left treatment centers weighing less than when they went in. They had been allowed to refuse food because “what can you do?” The common policy was that unless a child “bought in to their treatment” there was no point in “forcing” them to eat. Frankly, I think that the expense of hiring medical personnel may have been the actual reason for this, and the psychological explanation just a smokescreen.
The fact is, refeeding a child heals them whether or not they want to be healed. It simply must be done. Understanding this is why Maudsley and all forms of home refeeding have made such a contribution to the field.
When thinking about the use of NG tubes, let’s divide the patients into two groups: those with frank anorexia nervosa and those who have other eating disorder diagnoses. The treatment is the same (prompt, adequate weight restoration), but the rationale is a little different.
We get children from all over the country and world, and many do not have anorexia nervosa. Some have Avoidant/restrictive Food Intake Disorder (ARFID), some have Food Phobia, some have cancer cachexia, some have psychosocial failure to thrive or failure to thrive associated with other medical conditions. For example, we had a delightful boy whose life had been devastated first by his cancer and then by his chemotherapy: he was unable to experience hunger or appetite, his growth was stunted, his social development was stunted and he had no energy. His doctors had tried everything. Well, almost everything. We admitted him to PHP and placed a feeding tube to remove the pressure for him to eat. This allowed his parents (and us) to stop worrying about his caloric intake while we got to know him. In PHP he was included in the creative day of kids his own age. Slowly he regained his weight (over thirty pounds). His appetite returned, his energy returned and he grew several inches. The psychological recovery of this intelligent boy would bring tears to your eyes. He was eventually able to begin to eat solid food again and to find his favorites. And he is just one example of a child whose life was saved and profoundly altered, physically and psychologically by the use of a NG tube. You cannot be afraid to make life-giving interventions when they are needed.
Children and youth with anorexia nervosa are a little different in that they have a brain disorder that “commands” them not to eat. They come to us in various stages of illness, but all are told the same thing, matter-of-factly, not punitively: “if you cannot eat or merely refuse to, you are not in trouble, no one is mad at you, but we will need to place a tiny tube into your nose and stomach and feed you that way until you can. It is your choice.” The vast majority of kids will choose to eat -- wouldn’t you? But a few are so overwhelmed by their brain disorder, their thought disorder, that they cannot eat, no matter what. These kids have a NG tube placed to give them a break from the torment of worrying about food with every ounce of their strength. Eventually, they too return to eating. An occasional child will test us by eating at first and then refusing, to see if we mean what we say. Well, we always mean what we say or there’d be no point in saying it! If they are unable to eat sufficiently, they will have a tube placed until they can face eating again. This intervention will shorten treatment time for many children.
The majority of our NG tubes are placed right here in our facility and do not need hospital or emergency room placement. We sedate the child ahead of time. We use very, very small pediatric tubes. Our nurse is gentle and fast. Our therapists are there to be encouraging and our therapy dogs often come too.
Parents who have watched their child dwindle before their eyes, who have been afraid to go to sleep at night for fear their thin, weak child would stop breathing, know what we mean when we say we will do what it takes to save the life of a child. Anything short of that would be regrettable.
We just graduated an 11 year old boy from the Kartini Clinic and on his way out, proudly, he showed me a project he had been working on. He was supposed to build and design his own box of cereal and then promote it.
And since his cereal box is just about the cutest thing I have ever seen, I have to share it with you; he of course gave me permission to do so. Merry Christmas.
The front of his box: "Max's marvelous o[a]ts" with exhortation: "Allwase be coo
The back of his cereal box. I especially love “100% Me”.
Now, I have to say that I would be proud if I were able to draw such a fabulous self-portrait as he did. But how great is the “teck expert”! And it’s true.
Would that all of our kids could absorb some of this eleven-year-old’s self confidence: smart, “teck expert”, kind, nice, fair and funny! And he’s right, that’s exactly what he is.
So treatment can be successful, and the kids are pretty much always wonderful. Enjoy!
When patients graduate from the Kartini Clinic I am often asked by the anxious/happy parents how they are to deal with any eating disorder symptoms going forward. What if they refuse to follow their meal plan? What if they lose weight? Should they see a therapist for this? A dietitian for that?
What I tell them is this: You are the expert in your child’s meal plan. You know far better than any professional what degree of mealtime supervision is still needed (100% at first). You know what their meal plan looks like and why it looks like it does. Trust yourself, trust your teaching. And recently I have begun to use the phrase “Life stops until you eat” for any situation of food refusal they might encounter.
I’m not sure where I first heard this phrase or who the original author of it was -- please let me know if you know, so I can quote it with proper attribution. After all, how many people know that Kartini Clinic was the originator of “parents don't cause eating disorders and children don't choose to have them” or “without weight restoration you will get nothing”. Or that I was the originator of “State not Weight”. And the pithy and apt “life stops until you eat” is too great not to share; I would like to tip my hat to the author.
Sometimes a child who has graduated from treatment will need to see a psychiatrist for medication or complex mental health management, or sometimes see a therapist to deal with school anxiety, social anxiety, trauma or adolescent adjustment issues. But as far as the meal plan is concerned, parents: you are the experts.
The only spine-stiffening motto you need, should your child leave treatment and try to return to restricting is this: “life stops until you eat”, no friends, no going out, no cell phone, no parties, no car, no clothes shopping, no college visits. The first job is to nourish the body and all else comes after that.
Here we go into our season of Thanksgiving again. And we, at Kartini Clinic, give thanks for a lot of things: for the healing of our patients, for the continued evolution of (more) affordable healthcare for families, for enough food to put on the table, for the health and safety of our loved ones.
That’s the good side of Thanksgiving for us, but there is a challenging side as well. Thanksgiving is not just about gratitude in this country. Traditionally it has also been about food. Is this a bad thing? Emphatically not. Food, the eating of it in a social setting, the preparation of it, the celebration of it, has been the glue of human societies everywhere for as long as there have been humans. But for children with eating disorders, food celebrations offer special challenges which we as their providers and family members must meet with the only tools we have: preparedness, thoughtfulness and planning.
Children with anorexia nervosa, for example, cannot just suspend anxiety for a day and “eat normally”. And those whose challenges include bingeing and/or purging behaviors cannot just “quit doing this” because it is a special day and Grandma’s coming over.
At Kartini Clinic we have our family therapists make a plan with each and every family here, one that reflects their traditions (where possible) but does not put our patients in an anxiety-provoking situation. The Kartini Clinic meal plan perfectly fits a traditional Thanksgiving dinner (minus the pumpkin pie)---so where’s the potential problem?
Problems usually come in the form of comments by others, or of anxiety made worse by unpredictability. Everything we know about these difficulties the kids have taught us, and for those you who do not have access to a Kartini Clinic family therapist to help guide you, here are some suggestions from the kids themselves over the years:
please do not expose a very recently treated patient to a big gathering at Thanksgiving where all conversation will be about food: who is eating what, who is on a diet, who plans to binge on dessert, etc.
clue trusted family members into the etiquette of not saying anything about your child’s food, whether it seems to be a lot or a little to them
please do not allow conversations about weight, diets, your child’s treatment
please ask close family members not to comment on your child’s appearance (how about they talk about what they are doing instead of how they look? About their interests rather than their weight?)
let your child know what will be served ahead of time so they can get comfortable with it
set a time limit for participation and if it gets uncomfortable, leave.
Make arrangements ahead of time with your child who purges, arrangements that ensure that they will not be left alone and unsupervised with this temptation
If these arrangements seem unrealistic to you, given the press of demands from many quarters, remember that Thanksgiving is just one day and 2017* is just one year and that this might very well be the year you just skip it. Then, stay at home with your child, eat something they are comfortable with and…give thanks.
We had a therapy dog at Kartini Clinic for many years, and when the honorable Cleo, a black standard poodle, died it left a hole in our hearts.
I’ll never forget the day a small boy arrived in our office from another Children’s Hospital. His mother had removed him from the locked psychiatric ward where he had been placed for anorexia nervosa and terrible social anxiety. His transfer records labeled him as, “the worst case they had seen.” His mother was terrified we would say we couldn’t help them, and as her son lay on the exam table curled into fetal position, refusing to look up or speak, I did wonder.
In those days, my husband Steve managed Cleo and I asked Steve to bring her into the exam room that day. Now, standard poodles are not happy, lick-y, snuggly dogs. They tend to be aloof and watchful, and Cleo was exactly that type. She came in the room and simply sat next to the boy, who by then had slid off the exam table and was curled up on the floor. Short of lifting him up bodily there was little I could do about this unsanitary situation. His mother tried in vain to get him to stand up or sit up. Cleo just sat quietly. Suddenly, his small hand shot out and touched her curly black dog hair. She still sat quietly. Within a few minutes he had sat up and was petting her. It was the opening we needed, the small crack in his defenses that let us in and let us, ultimately, return him to his life.
When Cleo died Steve did not have the heart to replace her. We went for several years without any animal assisted therapy. Then came Ryla and with Ryla her therapist-trainer Lisa.
Cleo was tall and aloof. Ryla, a white miniature poodle-mix is enthusiastic, cuddly and cute. Her short legs take her everywhere the kids go, her round eyes take them all in, her certainty about being loved gives her free reign. She owns the clinic.
Ryla is sometimes accompanied by her fellow dog therapist, a boxer. They, in turn, share the spotlight with a hedgehog, a chinchilla, and several hermit crabs. I kid you not: hermit crabs. It’s hard to predict what will reach the heart of a child who is hurting.
But it’s Ryla I’m writing about today.
Kartini Clinic specializes in children with all conditions of disordered eating. We have a partial hospital program that serves children from ages 6 to 18 with anorexia nervosa, purging eating disorders, binge eating disorders, ARFID (avoidant restrictive food intake disorder), cancer cachexia, failure to thrive, and just about anything that causes a young person to refuse food. And because we are so specialized, we get children who are very ill and several who require tube feeds to save their lives. That’s right: to save their lives.
But tube feeds can be scary, and having to have a nasogastric tube (a tiny tube from the nose to the stomach through which life-giving fluids and calories can be sent) can be a frightening procedure for a child, and for their parents. Our nurse Sherrill places most nasogastric tubes right in our office. And her chief assistant is Ryla.
“Can you come in extra early?” Sherrill asked Lisa this week, “Our new patient is going to need a tube and she is terrified. I need Ryla’s help.”
So that little ball of white fluff jumped into the lap of that frightened child and made it possible for her to endure a scary procedure. Five minutes after the tube was placed, the child was laughing and petting the dog, who followed her upstairs for her first day of treatment.
Thank you Ryla, and thank you Lisa.
As Will Rogers once said: “If there are no dogs in Heaven, then when I die I want to go where they went.”
It’s lunchtime at Kartini Clinic, and patients in our partial hospitalization program are settling in for their midday meal. Joining them at the table is Nutrition Counselor Annastacia Weiss. Annastacia came to Kartini Clinic with decades of culinary experience. She studied at Western Culinary Institute and the Institute for Integrative Nutrition in New York City, interned at farms, founded the much loved North Portland cafe SweeDeeDee, and incorporated her knowledge of food as medicine while teaching in the Masters in Nutrition program at Portland’s National University of Naturopathic Medicine.
Throughout her culinary career and in her personal life, she has wanted to help people gather with their families, slow down, and enjoy eating together. Kartini Clinic’s emphasis on parents preparing meals for their kids and eating with them felt like a natural extension of her own philosophy about the importance of food in our family lives.
Families arrive at our doorstep from all walks of life, and with different circumstances and routines. While each family is unique, we prescribe the Kartini Meal Plan to all of them. Annastacia is instrumental in helping our families make the adjustments necessary to follow their meal plan at home. She meets with each new family to learn the basics about their eating habits and rituals. She finds out if they eat together regularly, if they have a dining room table that they use for meals, and about what the family typically does after mealtime. She works with them to address their individual challenges such as addressing the needs of siblings and adapting a menu that fits with their food culture.
Children in our partial hospitalization program eat breakfast, lunch, and snack at our clinic daily and dinner once a week. Annastacia adapts the meals offered at Kartini to take into account each child’s food preferences, allergies, and other dietary restrictions. While the meals adhere to the Kartini Meal Plan, Annastacia notes, “We’re not offering heavy duty gourmet food here. We are feeding kids, after all.”
Annastacia also eats meals with our patients. Typically, there are several sandwiches and high protein salads to choose from. Parents are sometimes surprised that even the humble peanut butter sandwich, served on whole grain bread with fresh fruit or vegetables, fits within a meal plan. “Really,” Annastacia says, “all food in our meal plan looks pretty normal. It’s all about getting the right amount of healthy carbs, protein, fruits and vegetables, and some fat on a plate.”
At home, some families rely on a recipe book that Kartini Clinic provides to prepare meals. Others are able to adapt their own family food traditions to the plan. To Annastacia, the meal plan is both medicine for our patients and a means by which their families can turn away from the many health problems that stem from our society’s current approach to food.
“We have seen food evolve to a place where it is making people unhealthy. It’s processed food, unconsidered eating, and then the fad diets. These diets create ‘food police’ in these kids’ heads. As a society, we create a lot of craziness around food.”
As a child moves through our program, much of Annastacia’s work involves preparing them and their families for life beyond their time at Kartini Clinic. The meal plan can – and often is – a bridge of continuity for our patients after they graduate from the program.
“As our patients leave our care, their meal plan is a safe set of rules to follow to get them back to health, and it greatly reduces their anxiety. Of course, it’d be great if they could get back to the ability to eat with hunger, when they need it, and to eat well, but the meal plan is something they can use until they are there. They don’t have to think about it, because they know intellectually they are getting what they need right now.”
In her daily interactions with patients, Annastacia thinks back on times in her adolescence when the adults in her life kept her on a healthy path. She didn’t always appreciate it at the time – and knows the patients she sees don’t always appreciate what happens in treatment. But her hope is that one day they will look back with a greater understanding of what it took to get them well. In the meantime, Annastacia invites them to the table and to give food a chance, one sandwich or salad at a time.
In the treatment of children and adolescents with eating disorders, depression is a not uncommon finding. Sometimes we identify it on admission to Kartini Clinic, sometimes it has already been identified before the patient ever saw us, and sometimes it is a residual of otherwise successful treatment. The latter is especially frustrating.
There is a saying in medicine, “when you leave the appointment feeling depressed, you know the patient's diagnosis.” Which might be why many practitioners dread treating patients who are suffering from depression, especially depression of long standing, and why they resort to “protestant ethic style” interventions largely comprising exhortations to “buck up,” “appreciate what you have,” “throw yourself into your work,” “think of others less fortunate than you,” and -- most prominently recently -- “exercise more.”
It’s your fault, don't you see? Your sloth and negative attitude have caused this.
Depression is a serious condition, described by physicians since the dawn of medical writing and, before that, known to traditional healers. It has occurred across all times and all cultures and all genders.
Certainly advancing the treatment paradigm is important for our patients, and all patients, and an improved understanding of the condition once referred to as “Melancholia” would alleviate the suffering of-- literally-- millions. An understanding of the connections and correlations with other medical conditions, including metabolic disorders of interest such as obesity, would be a great leap forward (remember, though: correlation does not imply causation!).
I may be quoting extensively from this book in future blogs, but today I want to quote the “Case of Job,” which impressed me greatly. This case references the Book of Job, from that most enduring of written works, the Bible. It is probably one of the oldest books therein, as befits a tale of human misery known even to the ancients. I knew this story from my childhood, but had not really thought of it as it relates to depression. Dr. Hedaya’s summary titles are in bold, the actual quote from the Book of Job (New International Version) are in normal text. Points #9 and #10 especially were arrows to my heart.
Job was a pious and wealthy Hebrew who lost his entire fortune, endured many horrible diseases and whose children were all killed in a short space of time. I think this qualifies as an adverse environment!
If you read the Book of Job, the details of his afflictions are excruciating. But to stick with those that reflect a timeless description of human depression:
Passive suicidal ideation-- “Why did I not perish at birth, and die as I came from the womb? I despise my life; I would not live forever."
Anxiety/obsessiveness-- “I have no peace, no quietness: I have no rest, but only turmoil. When I think about this, I am terrified. Trembling seizes my body.”
Hopelessness-- “What strength do I have, that I should still hope? What prospects, that I should be patient?”
Insomnia-- "When I lie down I think, ‘How long before I get up?’ The night drags on, and I toss until dawn.”
Infection/inflammation/malnutrition, poor self care-- “My body is clothed with worms and scabs, my skin is broken and festering. My breath is offensive to my wife.”
Social withdrawal/loss of meaning-- “Let me alone; my days have no meaning.”
Anhedonia-- “My days are swifter than a runner; they fly away without a glimpse of joy.”
Social ostracism-- “I am loathsome to my own brothers. Even the little boys scorn me; when I appear, they ridicule me. All my intimate friends detest me; those I love have turned against me.”
Failure of treatment-- “...you are worthless physicians, all of you! ...your maxims are proverbs of ashes; your defences are defences of clay… I have heard many things like these; miserable comforters are you all! Will your long-winded speeches never end? What ails you that you keep on arguing? ...So how can you console me with your nonsense? Nothing is left of your answers but falsehood!”
Reduced appetite/weight loss-- “I am nothing but skin and bones.”