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.
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.”
When you practice as long as I have in the field of childhood eating disorders, one thing becomes abundantly clear: there are cycles to the frequency with which patients appear on our doorstep for treatment -- and on the doorsteps of all the other treatment centers as well. The trouble is, it has proven difficult to understand the peaks and troughs of these cycles and correlate them to much of anything. But there do seem to be a few tentatively recognizable patterns. And these peaks and troughs of admissions/referrals to our clinic encompass newly diagnosed patients as well as relapses of patients formerly in remission. In other words, when newly diagnosed patients increase in number, our own (existing) patients begin to do worse. No idea why this seems to happen.
An example of one of the patterns we see and believe to understand, however, involves the college-aged patient and Thanksgiving. Often, the Thanksgiving break is the first time parents see their young adult child after they sent them off to school in late August or early September. Hence, it is the first time they are aware of how much weight their child may have lost. For this reason we experience a spate of college-aged referrals around Thanksgiving -- but more about that in another blog sometime.*
The other pattern involves the first few weeks after the start of school in younger patients: just about the time results of the great viral mixing of school attendance begins to hit the pediatricians’ offices, we seem to see relapses in some existing patients, in addition to those newly diagnosed. Within the first month of a new school year kids begin to present to us with weight loss and food refusal.
Of course, from the family’s point of view, this is just about the world’s worst time to get the news that school attendance will need to be put on hold for treatment, but there you have it: the child has lost weight, is often medically unstable and finding it difficult/impossible to eat at school or even at home without intense supervision.
I have often suspected that this apparent worsening of symptoms around the first month of school attendance is actually not caused by the stress of school (although I imagine it could be) but, rather, had its origins in mid to late summer, when wishful thinking took over.
What do I mean? Summer is a two-edged sword: the academic performance stress is reduced when school gets out, of course, but summer also represents a significant reduction in the day-to-day structure of a child’s life. There is more free time, there is more down time. Free time/down time is not our friend. The experienced parents of children and youth with eating disorders can tell you that lack of structure is hard for them. The structure of a school day is actually a boon and the “freedom” of summer a challenge.
So I think that kids often begin to struggle with their meals and even lose weight in the summer months and that is where the “wishful thinking” comes in. Rather than yank on the alarm bell, parents hope that school will normalize everything and treatment will not be necessary. The problem is, when you have anorexia nervosa, “lose weight, get happy.” And this apparent improvement in mood fools us into complacency. “It’s only a few pounds” lulls us into thinking the eating disorder will be satisfied with this. The kids enter school already on the (invisible) downward path, which within a few weeks becomes manifest as food refusal, hiding school lunches, social withdrawal, an increase in arguments at home about eating, etc. A few weeks later, when the degree of struggle can no longer be ignored, the family is in our office (or someone else’s) and we think “school caused this problem.”
All I can offer in the way of experienced wisdom is this: in a child with an eating disorder, all weight loss is bad. All food refusal must be taken seriously and treated immediately. Do not wait. The chances of spontaneous reversal are low, the chances of worsening high, with the nearly inevitable disruption of school attendance to follow.
Act early, act swiftly, act decisively. And salvage that school year.
Original publication date: 9/18/13
*Please note: Kartini Clinic no longer treats college-aged patients.
Mood is a hard thing to measure, a chimera at times, hard to grasp, hard to define. Good mood, while often eluding exact definition, is obvious to the observer: the step is light, the smile is on, the shoulders are straight, the energy level is high. Low mood is just that: the shoulders are held low, the facial features droop, the light goes out of the eyes and energy is… low.
Depression seems to be expressed as consistently low mood. It is hard to experience and it is hard to be around. Like chronic pain it can be absolutely personality-unraveling.
“She was so happy and energetic before,” I was told of one patient. “Since she started treatment her mood is worse everyday. She cries, she hates herself, she is angry at us. This is just not my girl.”
Must be bad treatment, right? I’m afraid not. The hard truth about treating eating disorders is that mood is no indicator of efficacy of treatment. The more successful weight restoration is, for example, the darker the mood. Most (but not all) children and teens with anorexia nervosa do not actually want to get well. Or they may want to, as long as it doesn’t involve gaining weight.
With anorexia nervosa the simple fact is that, as we say at Kartini Clinic, “lose weight, get happy.” And the converse of that is “gain weight, get sad.” So, when a patient is restricting and exercising they may feel on top of the world. And yet it is bad for them. When they are in the process of weight restoration they may be sad/mad/depressed. And yet it is good for them.
The literature written by parents and advocates of family-based treatment is replete with accounts of how wild the ride can be when a young person with anorexia is re-fed. I have even seen a young mother covered with bruises from encounters where she tried to feed her panicked, desperate and angry child, a child who had always been sweet, conscientious and kind.
And yet that is not the hard part. The hard part is that when our children are in pain, we are in pain. When our child seems to suffer worse moods with treatment we blame the treatment or the providers or ourselves.
Who should we blame? The illness.
It just isn’t true that if it makes you feel good it is good for you. Examples? Heroin and all the drugs of abuse; they make you feel good. And medicine, as everybody’s grandmother knows, is often bitter. Immunizations hurt. Repositioning a dislocated shoulder is painful.
Though it doesn’t make me popular to say so, sometimes we walk through a long dark tunnel to find the light. But the light is there and the person who cares about you is the one holding your hand.
Is anorexia nervosa (AN) a chronic illness? What do we mean when we say that AN, or any other eating disorder, is a chronic illness?
Wikipedia says: “The term chronic is often applied when the course of the disease lasts for more than three months. Common chronic diseases include arthritis, asthma, cancer, COPD, diabetes and viral diseases such as hepatitis C and HIV/AIDS. In medicine, the opposite of chronic is acute.”
Lasts for more than three months? Oh yes. By that metric AN is certainly chronic. But does chronicity imply anything about whether or not it can be cured? No, because on that sample list of chronic illnesses hepatitis C, for example, can certainly be cured, as can several cancers. And note that it was a major accomplishment to turn HIV/AIDS from a death sentence into a chronic (but controllable) illness.
So I would say that eating disorders, like depression and anxiety disorders, are chronic illnesses which (with treatment) can be made to disappear for years, perhaps even for a lifetime. Far, far from being hopeless, the situation with pediatric eating disorders is very hopeful. Kids can and do get well and go on to lead wonderful lives. Last week, a 29 year old former patient of ours came to see us and to thank us. She is happy, beautiful, married, educated and the mother of two. She is successful and… grateful. “Thank you,” she told us “for insisting that I do what was right rather than do what I wanted.”
Acute illnesses come on suddenly, sometimes within hours, get treated and go away (or are fatal) within a short period of time. Chronic illnesses often come on more slowly, even subtly, and typically require longer treatment in order to go into remission. Remission means the symptoms are gone for now, whether “for now” means for months or for years. And no doubt in some people their symptoms extinguish forever. The trouble is, you can’t fast forward to the end of someone’s life to find out.
The opposite of remission is relapse.
But let’s be careful with our vocabulary here: you have to actually be “in remission” in order to be said to have “relapsed.” A common error we observe is for parents or providers to say that a child has relapsed when they were not in remission in the first place.
In the case of AN it is not enough to be weight-restored in order to be “in remission.” There can be no remission without weight restoration, but the fact that a patient is no longer restricting or losing weight is not enough to call them in remission. They may still have tortured thoughts about their imagined large body size, their weight/size may assume much more importance in their minds than it deserves, they may not be able to resume their former easy social and familial functioning and they may be too anxious to return to school. Resolution of these issues is called psychological remission, and it takes longer to achieve that mere physical remission.
So what does relapse look like? First and foremost it is likely to look like a resurgence of the psychological symptoms you saw initially: increase in social isolation, focus on schoolwork to the detriment of time with friends and family, increased anxiety, increased exercise, perhaps an increase in body checking or a refusal to wear a swimsuit, increased irritability. Then the “shaving calories” behavior starts: decreased portion size, uneaten snacks, new rejection of categories of foods (“gluten” “meat” or whatever)... Basically it begins to look like it did when you first met the eating disorder, only sometimes more subtle.
What do you do? JUMP on it. Do not tolerate any weight loss, monitor exercise, supervise meals and if weight loss cannot be stopped within in 10 days or so seek help.
The problem with relapse is that it is terrifying and it feels like a failure: your failure, your child’s failure, the treatment team’s failure. Yet it’s not. Relapse is a common feature of any chronic disease.
But the good news is that you can get your child back into remission as long as you do not stick your head in the waters of that ole river in Egypt: de Nile.
Stay calm. Don't panic, you actually do know what to do. Avoid a circular firing squad with your family, child and treatment team. It’s no one’s fault. It’s just the way this illness acts sometimes.
Avoid wishful thinking: I’m sure she doesn't want to get worse because she’s graduating in a few months, going off to college, taking a trip to France, just got on the swim team... you name it. Remember that your child is not choosing this relapse, they are suffering from it.
Relapse is not fate; it is a stumbling block on the road to your child’s future. Take a deep breath, reach out to those who support you, and carry on. With determination and treatment, this too shall pass
At Kartini Clinic, we have had a parent support group from the beginning. At first my husband Steve and I led parent group. After a few years it was taken over by a much more competent leader, Kartini family therapist Leslie Weisner LMFT, in whose hands it remains today. As our program grew and developed we added more groups, all free of charge, for our patients’ parents. Jean Malnati, our parent advocate and herself a parent of a child with an eating disorder, leads the parenting skills groups, and Annastasia Weiss, our amazing chef and teacher, the cooking and nutrition/food skills offerings.
Taking a page out of the FEAST Forum’s book, where parents support each other online from all around the world, through thick and thin, we have tried to develop a parent-to-parent and therapist-to-parent opportunity to listen, speak out, absorb and –yes—cry.
So parent groups would seem to be an unmitigated good, and I believe they are. Yet not all parents choose to attend. Not all of them take advantage of this opportunity, and I wrote this to try to convince at least those who read my blogs that parent groups are a Good Thing!
I have been surprised, over the years, by the reasons occasionally advanced by some parents for not attending parent groups.
Some parents say they are too busy, which is understandable. Treatment, especially family-based treatment, is intense and demanding and parents are trying to hold down jobs and often have other children. Some parents are shy, which is why it is great to have the ability to speak one-on-one with Jean, our parent advocate, to literally go out for coffee with her and seek advice and comfort.
Once I had a mother tell me angrily, “I’m not going to go to some damned group where I have to listen to other people’s stories of woe. I am not interested in their problems, I have enough of my own.” She had no comfort to give and was not interested in receiving any from people she did not, as she told me, consider her equals. That was a sad response.
At some point in our lives, no matter how educated, well-positioned or smart we are, we all need comfort; we all need a shoulder to cry on, and someone who will, as the song goes, help us, “pick ourselves up, dust ourselves off and start all over again.”
May I encourage you to seek the support, in person or online, of other parents who have been through it-- some of them several times, either during relapses with their one child or with more than one of their children. Such parents are incredible sources of strength and advice. And as Annastasia wrote to me about this subject: “To witness peers going through similar struggles at different stages brings light to the bigger picture of this disorder.”
Help is good wherever we find it. It can be dramatic, quiet, constant, intermittent or surprising, and we sometimes find help in the most humble of places.
For many years I have been saddened by our inability to help families with a child with selective eating. This condition is described here and here.
And since, for the most part, such children remain on their growth curve, there has been no medical urgency to this—which completely ignores the psychological urgency that many parents (and some patients) feel.
Now, however, we are exploring a new biological option, which, if we are successful, may offer hope of change for people with selective eating.
I will be conducting a pilot study of ten adults or older teens (17 years or older). With this blog I am recruiting a total of ten non-smoking subjects, 17 and older, who self-identify as having selective eating and who wish to change. They must have no food allergies. They must be able to come to Portland, Oregon to the Kartini Clinic for a few hours at a prearranged time. This will be the sum total of their commitment.
If you know of anyone who might be interested, please tell them about this study.
If you are interested in volunteering for this study or have questions please contact us at email@example.com, and include Selective Eating Research in your email’s subject line. Once ten patients’ results have been analyzed, I will discuss our findings on the blog.
How to Recognize Eating Disorders in Boys - YouTube
This video shows an 11 year old boy who has struggled with classic anorexia nervosa, including fear of fat, self-denial, increased and compulsive exercise,weight loss and intrusive thoughts of worthlessness and shaming. He is also an excellent student, excels at sports and is personally very tidy. He comes from an intact, highly functional and supportive family and there is a family history of OCD and perfectionism. He is able to talk about “voices” telling him not to eat and what to drink. There are no symptoms of psychosis or delusions except for the delusional belief that he is fat. It is our hope that awareness of what anorexia nervosa can look like in young boys will help providers recognize the illness early and seek specialized help.
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