Kartini Clinic for Children and Families

Pediatric Eating Disorder Treatment Program

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New to Treatment? Don’t Panic!

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Your child has been diagnosed with an eating disorder by one of the doctors at Kartini Clinic. Whether this is a restricting disorder with fear of fat, a bingeing and purging disorder or what we call ARFID (avoidant restrictive food intake disorder), it matters little.  What matters is that the prospect of treatment is new and intimidating to you.

Before treatment was decided on, you may have struggled with typical and understandable ambivalent feelings:  are we over-reacting? Are we under-reacting? Is this our fault? Will the doctors and therapists blame us? And of course: how on earth are we going to rearrange our lives to accommodate family-based treatment?

Step one:  take a deep breath.  We will walk with you through all the details of treatment.  We will take one step at a time and help you gain confidence in the process, which many families have been through before you, and confidence in the treatment outcome, which is growth and healing.

Step two:  be gentle with each other. Fathers and mothers may react very differently to the information that their child is sick enough to warrant treatment. Often (although these roles certainly can be reversed!) fathers cope with their fear by focusing on the financial picture for the whole family. This is not uncaring, it is responsible. Every fiber of being in the other parent may be screaming: who cares about the cost?  Just treat my child!  And while this is understandable, we are all grown-ups here and we are going to have to find a way—together– to help you keep a roof over your family’s head, pay for health insurance, keep your job and care for other children in the family. So take a second deep breath and listen when our insurance professionals talk. Their job is not to place barriers in front of your child receiving treatment; they are going to be at your side advocating to knock those barriers down. It’s not cold and calculating to listen as they outline your insurance benefits, it’s practical. Take notes if you can, put your smart phone on “record”, if you wish, and take the card they offer you to contact them later when you can clear your head. Knowing you have people truly on your side can decrease your sense of panic.

Step three: Let’s talk about safety. If your child is terrified of treatment (they’re going to make me fat!  I’ll kill myself first!) spend some time before you leave going over a safety plan with our doctor. Are there guns at home that are not locked up? Who will make a plan to take care of this immediately? Are there Costco-sized bottles of Tylenol and Aspirin at home? Lock them up too. Can one of you sleep with her/him or at least sleep in the same room? When you take them anywhere in the car, if they are upset or have made threats against themselves, put them in the back seat with the child locks on. These are some examples of simple plans you can make together. Knowing your child is safe will decrease your panic.

Step four: understand the nature of eating disorders before you take one step out of our office. What I mean by this is that all biology and research point to the fact that eating disorders of every kind are brain disorders and can run in families. Knowing this helps you internalize the most important message of the day: parents do not cause eating disorders and children do not choose to have them. Your child is not “doing this”, it is “happening to them”. It literally does not matter whether or not you have talked negatively about your own weight, have fought with your spouse, have been divorced amicably or horrendously, or have the “perfect family”; you could not cause an eating disorder in a child any more than you could cause autism. Knowing that no one at Kartini Clinic will blame you can also decrease panic.

Step five: be firm but gentle with yourself and your child. Tolerating our own children’s distress is far and away the hardest thing about treatment. Their pain is our pain—no, it is worse than our pain. But only real healing will ultimately take away their pain.You cannot do so by hedging about the need for treatment or eating or weight stabilization. “As your parents we have decided to get treatment for you and for us, and we are going to start now.” Calmly. Lovingly. Firmly. Remember those temper tantrums as a toddler? Deep breath, and ignore. The certainty of doing the right thing can decrease panic in both you and in them.

Step six: make your orientation appointments, your family therapy appointments, your nurse appointments, your medical appointments and attend parent group. Though you may feel like you are thirsty and trying to suck on the end of a fire hose, ultimately more information and more support will make the process go faster and the outcome more assured. And finally, the last step.

Step seven: educate yourself. Kartini Clinic providers do not expect you to know what to do, what to say and whom to tell right out of the box. You will want to know “why” and we encourage this. Why do I have to eat on the meal plan with him? Why can’t she continue to exercise? Why are parents in charge of food? Why are you drawing so many metabolic labs? Why can’t she eat sweets? And when? When will she understand that she is beautiful? When can we be done?  When can I trust her to eat on her own? These, and many more, are perfectly valid questions which you will need to have answered for yourself several times over as you move through treatment. There are not enough hours in the day to answer them all as often as we would like, so we encourage you to do your homework. Folks: do your homework!  Your child and your family are at stake. Read your Parent Handbook, cover to cover. Read the blogs. Send the blogs that you find relevant to your relatives, friends and coaches. Join the FEAST parent forum and talk with other parents. Read Give Food A Chance. Ask the grandparents to read it. You know, the way we all do research on the web when trying to understand the best car to buy, the right food processor, the right college. Surely this deserves the same level of attention and thought? Educating yourself will help you focus your important questions when you do see the doctor or nurse. It will — you guessed it — reduce the panic you feel.

20 Tips and Tricks for Re-Feeding Your Child

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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.

No Negotiation

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.

 

Peaceful, Friendly

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?

ARFID Revisited

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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.”