Kartini Clinic for Children and Families

Pediatric Eating Disorder Treatment Program

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The Importance of Parent Groups

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kartini 081717 webAt 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.

To The Bone: What You Should Know

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kartini blog 072017

 

On Friday, Netflix released “To the Bone,” a film about a young woman struggling with anorexia nervosa. The film has received a great deal of publicity, raising some questions and concerns among parents of children and adolescents with eating disorders.

Here are five questions you may have about the film.

 

My child is recovering from an eating disorder; should they watch this movie?

The question we would ask is why? If it is to gain “insight” into a complex brain illness in the hope that it will aid in recovery, the answer is no.

While this movie is at times emotionally touching and quite funny, in our opinion it doesn’t really represent well the current scientific understanding of anorexia or its evidence-based treatment practices, especially for children. It is a dramatic film much like any other: about imperfect people trying to navigate the challenges in life we all face. It simplifies and conflates many complex biological issues; it is at best a very personal journey through illness and not directly applicable to anyone but the author/director’s own biology and personal circumstances.

One of the most important things to bear in mind – at least for parents of minor children – is that this film is not about children at all (despite the emotional immaturity of several of the characters, including adults!). The scenes depicting treatment especially are very much from the perspective of adult treatment providers. While we would be the first to say we are not experts in adult eating disorder treatment, we can say with full confidence that this film does not depict the type of treatment that has been demonstrated to work best for children. And it is emphatically not the kind of treatment that we render at Kartini Clinic.

We might venture to say however that it could be an interesting movie for parents and therapists to watch and discuss together (without the child), as it does touch on important and quite common issues of family dynamics, and not just between parent and child, but between biological parents and step-parents, siblings, etc. In this sense it could provide some insight – or at least an opportunity for empathy – to those not directly suffering from this particular illness but whose lives are profoundly affected nonetheless.

 

How do I know if my child is ready to watch this movie?

Again, we would ask the question, what do you as a parent hope to gain from having your child watch this? As the basis of effective treatment we would say this movie is not what any child in recovery – or attempting to achieve recovery – needs to see. But we would also not want to discourage parents or other family members from watching and discussing its themes amongst themselves and/or with a family therapist.

 


My child's friends and schoolmates have all watched this movie and are now talking about eating disorders more than ever before. How do I help my child handle the hype?

By reminding them that they are not defined by their illness and that this is not real life; it’s a movie. It is no more applicable to them and their own treatment needs than the latest installment of Guardians of the Galaxy.

 

How do I know if my child is relapsing? How should I react?

If you suspect your child has been affected by this movie, either directly or indirectly, contact your family therapist or current provider immediately. If currently in treatment, be sure to raise it at your next appointment. For signs and symptoms of relapse, please refer to this blog post by Dr. O’Toole.

 

This movie about eating disorders is getting a lot of attention in the media. Could this cause more kids to develop eating disorders?

Absolutely not. Dramatic depictions cannot “cause” a biological illness such as anorexia nervosa anymore than pictures of cheeseburgers can cause diabetes. It’s just not possible. Could it be triggering to someone with a biological predisposition to the illness or someone in treatment/recovery? Perhaps, and so exposure for those in treatment or recovery is probably best avoided altogether. Better to watch The Lego Batman Movie.

But in all seriousness, we are all exposed daily to these sorts of themes and yet (thankfully) anorexia remains a rare illness. If the media could cause an eating disorder you would expect many more cases of illness than are currently diagnosed, even as we get much better at spotting and treating this dangerous brain disorder in children. Biology causes anorexia nervosa, not motion pictures.   


 

Why Animal Therapy?

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ryla blog8 AM: drop-off time at Kartini Clinic. It’s early, and patients and parents alike have a day of hard work ahead of them. But then… enter Ryla.

Family therapist Lisa Peacock says that one of her favorite moments of the day is seeing the mood in the waiting room transform when Ryla or Baxter, her two therapy dogs, run in to say good morning. That’s one of the simplest but most effective aspects of animal therapy: most people like animals, and having one around makes them happier.

It can also make the clinic feel a little bit more like home. Lots of patients have pets, so having an animal makes them feel more at ease. And this works both ways: as patients work with Ryla, Baxter, and other animals, Lisa helps them develop strategies for using their own pets for comfort and support, preparing them to practice self-care once they are discharged from the clinic. It’s just one answer to a broader question about the many forms recovery can take. What form does your comfort take? Where can you find it in your daily life? Animals are a good answer for many patients– to the point where we’ve had many patients leave the clinic expressing new interest in becoming a vet, or otherwise working with animals.

Especially for the youngest age groups, the animals are a useful centerpiece for developing important social skills, including helping manage impulse control problems, or learning to take turns and share. Older patients, on the other hand, who can feel frustrated by the requirements of treatment, appreciate the animals as a way to demonstrate responsibility. It’s common for teenage patients to worry that they are a burden on their families, they often feel that being in treatment puts them in a constant position of being a recipient of care. A therapy animal gives them another living being to whom they can give love and support – and who accepts their love without judgment. The work is not just about treating patients’ eating disorders, but equipping them with skills and tools to smoothly return to today-to-day life.

Of course, day-to-day life continues even when in treatment, and that’s something that animals help us remember, too. After a difficult appointment or therapy session, seeing Ryla rolling around on the floor can provide much-needed laughter, and a reminder that even in the hardest moments, life goes on… and that includes the good parts.

Finally, animals provide a source of distraction– in a good way. Treatment can be a difficult time for the entire family. But animals can be a source of positive memories and wonderful moments during this rocky journey, something to look back on and feel good about. It can also provide fodder for conversation, something exciting to share at the end of the day– mom, dad, I met a blue-tongued skink!

(The skink is Dan, by the way.)

dan

 

 

 

 

 

At Kartini Clinic, we know that there is so much more to eating disorder recovery than just food. Animal therapy is just one of the ways we strive to offer a holistic treatment experience for all of our patients.

Processed Food the Foodie Way

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kartini web 41317Nearly every day I am anxiously asked whether or not our young patients can have rice “milk,” almond “milk,” soy “milk” or coconut “milk” instead of the whole milk that is on our menu. These inaptly named “milks” are about as related to milk as cheese whiz is to cheese, and although not harmful (and even delicious), should not be mistaken for the white beverage given to early mankind by dairy animals as a source of protein, fat, calcium and vitamins. They are perhaps more properly called soy, rice, almond or coconut “drinks.” What’s in a name? Well, ask the marketers. By labeling them “milk,” parents think they are giving their child a more healthful version of the drink-food that has sustained children the world over. It says it’s milk, right? It must be good for children.

Not all of us carry the genes to split milk sugar (lactose), however, and may need supplements of that enzyme (lactase) to do so. Milk protein allergies do exist, but are thankfully rare. Many populations have solved the lactose problem naturally by pre-fermenting milk before ingesting it, giving us the world of yogurts, kefirs, quarks and cheese, among others.

The New York Times recently ran an article comparing the various plant-based “milks” nutritionally. They are not one size fits all. They say: “…in terms of nutritional content, a recent study in the Journal of Pediatric Gastroenterology and Nutrition confirmed that plant-based beverages vary widely in their nutritional profiles, and the authors recommended that young children drink cow’s milk unless there is a medical reason they cannot.”

The Cliff notes are these: 8 oz of cow’s milk has 8 grams of protein and lots of calcium (in a form that is more easily digested than the calcium added to the plant-based drinks to level the playing field). Coconut milk, for example, has less than a gram of protein and only added calcium. And then some nut or legume-based beverages have been fortified with Xanthan gums and other thickeners to give them a mouth-feel similar to cow’s milk and make them seem less thin and watery. I urge you to read the New York Times summary article or, better still, the study in the Journal of Pediatric Gastroenterology and Nutrition and judge for yourself. We already know pediatric patients do not need to be afraid of the fat.

Oh and by the way, my current favorite myth-challenging article is one looking at the nearly ubiquitous belief that milk causes mucus or phlegm. My mother insisted it did, her mother insisted it did. Well, milk drinkers and dairy product lovers everywhere, I guess we can rest easy.

Five Things Every Parent Should Know About Childhood Eating Disorders

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AdobeStock 770934451) Weight loss in children isn’t normal

Imagine you’re a parent of a bright, active 12 year old boy. He gets good grades and has lots of friends. He excels at sports. Then something changes; he begins to lose weight. At his last checkup his pediatrician registers a heart rate in the low 50s. He starts to withdraw, not doing many things he used to enjoy, with the exception of exercise. He now exercises with a new intensity.

His doctor tells you not to worry. “It’s just a stage”, she says. “Don’t make a big deal out if it, or you might make it worse. He has weight loss and a low heart rate because he’s an athlete.” But you have the nagging feeling that something’s wrong. What do you do?

For nearly two decades Kartini Clinic’s internationally recognized team of pediatricians and therapists has diagnosed and treated more than 3000 children from across the country and all walks of life. And we have seen presentations like the one described above hundreds of times.

Our message is always the same: weight loss in children is not normal and should be investigated immediately.

And weight loss shouldn’t be the only concern. Because children are still growing they need to gain weight. An interruption in their past rates of growth and development is a sign of potential trouble ahead. Your child’s growth chart is a critical diagnostic tool that can provide early warnings. Always review your child’s growth chart with their doctor and remember that averages don’t apply to individuals. What matters most for your child’s health should be based on their unique biology.

2) Children are not small adults

In the example above, with a daytime heart rate in the low 50s, this child’s overnight heart rate could be in the 40s. This is dangerous territory for a child. The American Academy of Pediatrics’ hospitalization guidelines recommend admission with a nighttime heart rate below 45, regardless of athleticism. Don’t be fooled into thinking that because Usain Bolt has a resting heart rate in the 40s, it’s OK for your child to do so.

Childhood is an essential period of growth and development, a time when critical biological systems form. Weight loss – or simply a failure to grow and develop normally – could signal a dangerous disruption to these processes.

3) Parents don’t cause eating disorders (and children don’t choose to have them)

This is our motto, and something we make clear to all families from day one. The scientific evidence is unambiguous. Parents don’t cause a child’s eating disorder, any more than they cause Type 1 diabetes or autism. These are both understood to be genetically inherited illnesses. So are eating disorders.

4) Eating disorders are brain disorders and run in families

How do we know this? Decades of research using twins separated at birth has firmly established the heritability of anorexia nervosa (the most thoroughly studied eating disorder) between 50% and 70%. By comparison, heritability of height is about 90%. This means your height is 90% dependent on your parents’ height. The other 10% comes from environment. Equally, anorexia’s high heritability rate implies that it’s largely a biological brain disease, passed from parent to child, but with a significant environmental component. But like many complex illnesses, we don’t yet know enough about what environmental “triggers” lead some who are genetically vulnerable to become ill.

5) If you think something’s wrong, get help

We always tell parents, ‘you are the experts in your child.’ If you think something’s wrong, don’t let your concerns be ignored, even by your pediatrician. Our colleagues in primary care are in a tough position; they don’t want to overreact. Furthermore, eating disorders are thankfully quite rare. However, most doctors don’t have training in diagnosing or treating them. But they do happen, especially to genetically predisposed children. It’s therefore critical to understand the specific risk to your child. A pediatric specialist’s evaluation is the best way to rule out an eating disorder.