Friday, August 29, 2014

Friday Reflections: Are We There Yet?

Guest Post by Axa Carnes


One of the most common questions that parents of children with eating disorders ask is: How much longer….? How much longer will I have to feed my child? How much longer will my child be ill with this wretched disorder? How much longer until the Ed voice goes away? Then, there is the question that most parents ask “How much longer until my child is back to normal?”.

The cruel reality of this illness is that nobody knows how long it will take a child to recover and neither the child nor the family will ever go back to what was considered as “normal” before the illness.

I asked myself and others “how much longer?” and “are we there yet?” when I was going through the terrifying stage one and then again when we seemed stuck in the never ending stage two. I continued wondering how much longer as my daughter experienced paralyzing social anxiety, exercise compulsion, weird phobias, PTSD, sensory integration disorder,  and started struggling in school. These were all issues that appeared for the first time in her life right after we had supposedly gotten rid of the eating disorder!

In the midst of the uncertainty, I chased promising pots of gold at the end of various rainbows. Among others, I ran after the reach the ideal target weight rainbow, the maintain weight for a certain period rainbow, and the treat the co-existing condition rainbow. Chasing the rainbow was necessary and brought improvement but expecting that “normal” would be found at the end of it,  left me disappointed and frustrated.

One day, I had enough and stopped chasing magical pots of gold at the end of rainbows.  I threw away the expectations for normal and the self-imposed deadlines for recovery.  I came to a point of acceptance that maybe “as is” was as good as it was ever going to get for my daughter and for us as a family. I accepted that she would never be “normal” like she was before the illness and I focused on the progress that she had made. A funny thing happened, *I* changed. I stopped waiting for the elusive “normal” and started loving and accepting my child as she was at that point. I don’t know that things changed overnight, but since I wasn’t ticking off days in the calendar any longer, time frames didn’t  matter to me at that point.

When I found my rest in what I had at that moment, not at what I wanted to have, things got much better. I stopped putting pressure, mostly unspoken but felt nonetheless, on my daughter to be normal and to get over “it”. This new normal wasn’t bad, it was just different. My child was not a little girl any longer but a beautiful teenager who had emerged as a warrior with battle scars to prove that she had battled a deadly illness. My husband and I had grayer hair and more wrinkles as the result of  many sleepless nights, and hours of worry over our daughter. My younger son was wiser with an awareness of vulnerability and risk, that a pre-teen should not have at that age. Our family was normal in the way that only families who have experienced catastrophic illness can be normal.

I have found that this new normal both requires and allows me to live thankful for every little thing that my children do that reflects our familial bond and all that we have conquered together. When my daughter kisses me or snuggles up to me, my heart soars with joy. When I hear hearty laughter between my son and daughter, I feel warm inside.  When my husband and I stand together as partners who will not be manipulated by our children, they understand that we have something unique that was born out of a relationship tested by fire in the midst of crisis.

I now live in the moment with one foot placed in that fun state of living life with abandonment and one foot firmly planted in a reality that demands caution. I indulge myself on occasional glances towards the past that bring a small twinge of pain but that are necessary so that I can keep a keen eye towards the future.





Axa Carnes is a past F.E.A.S.T. Board Director and has been a member of Around the Dinner Table since 2007. Axa's daughter was diagnosed at 9, refed at home, weight restored by 11 and has now been in recovery for 6 years.

Thursday, August 28, 2014

Guest Post: Luck, Love and Good Treatment

 by Dr. Mark Warren  MD, MPH, FAED, CEO, Medical Director


 "...if your Child is not getting well it is because the treatment 
is failing, not you" 


I’ve had the privilege of working in the eating disorder field for many years. To come to this work as a recovered professional has been an extraordinarily powerful and wonderful experience. As a male who has recovered from an eating disorder there are ways in which I know my experience has been both very different and very much the same as a woman in a similar situation. I am part of a group of recovered professionals organized through The Academy for Eating Disorders. There are only two men in this group at this time. So I’ve had the privilege of hearing from many women, and a few men, about their recovery, their experience, and what it is like to have had an eating disorder during the 60s and 70s, when treatment was not available. I’ve also been able to tell my story publicly, which has been very positive and healing for me.


My eating disorder itself was anorexia and followed what I would consider to be a fairly classic pattern. It started in my teens, I was restrictive in food choice and amount, ran excessively for the purpose of losing weight, weighed myself constantly, was obsessed with food, body, size and shape and found myself fairly isolated from the world around me. I think the thing that was most powerful as I recall this period of time was the extraordinary experience of invisibility. As a man with an eating disorder my illness was literally unseen by every single person I came into contact with - including myself.


For me, invisibility was a double edged sword, both making it harder to be seen and making it easier to avoid stigma once recovered. For males struggling with eating disorders this dual nature remains a dominant concern. A man with an eating disorder may be less likely to be remarked upon, have less insight into their own behaviors, misinterpret eating disordered behaviors and medical complications and may be generally ignored by peers, family, and the medical profession. This adds complicating factors for a man to seek treatment, obtain treatment, and find a supportive community to help them stay in recovery. I was fortunate that I fell in love with a woman (my wife, Lisa) who saw my disorder for what it was, who re-fed me, and watches over me to this day. Many people, men and women alike, are not so fortunate.

For parents, it is incredibly easy to not see your child’s ED till it has been present for a while.  As happened to me, the world around you ignores the disorder, your child is unaware they are ill, and secrets are at the core of the illness.  And when you speak to a professional it is likely they will minimize the disorder or recommend a treatment that does not work.  It is so important to remember that parents cannot cause an ED.  And if your child is not getting well it is because the treatment is failing, not you.  Only good treatment produces good results.  Love alone is not enough.  One thing I feel I know for certain is that if my own parents had known of my disorder they would have gotten me into FBT as soon as possible and I would have hated it but I also would have gotten better.  Many years later, when I first discussed my ED history with my mother her first question was did she cause it.  And I knew for certain she did not.  And I will always know that she would have and could have helped me if FBT had existed then.  Your child’s greatest fortune is the loving way that FBT can bring your family together for the health of your child. 

The crucial challenge for the field is that we know we can’t depend on luck and love to recover. Luck is a great thing to have and love is even better. Treatment, however, is a variable we can control. Our task as families and professionals is to continue to create an environment so that good treatment is available to all so that all individuals who are suffering from an eating disorder can have full and joyful lives.





Mark Warren, M.D., is the medical director of The Emily Program. From 2006-2014, he served as medical director and co-founder of the Cleveland Center for Eating Disorders, a comprehensive eating disorder treatment program. His practice focuses on bringing the most up-to-date research into evidence-based care.  Dr. Warren co-chairs the Academy of Eating Disorders Presidential Task Force for Medical Care and serves on the FEAST Medical Advisory Board and the London-based Succeed Foundation Medical Advisory Board. He has presented extensively at the International Conference on Eating Disorders, The Renfrew Foundation and the Multidisciplinary Eating Disorder Association.

Monday, August 25, 2014

Advocacy Monday: Closing the Awareness Gap

As you know, F.E.A.S.T. is honoured to be partnering with EDC and others for the inaugural Mothers and Others March Against Eating Disorders on September 30, 2014.

Advocacy can be intimidating.  I am never quite sure I am doing it 'right'.....or even, what it is I am supposed to be doing.  Influencing public policy and resource allocation decisions seems somehow daunting.....so I don't think about it like that. I start smaller: I think about closing the awareness gap.  I think about all I didn't know about eating disorders before our fated diagnosis;  I think about how 'wrong' I had it before our fated diagnosis......and then I think about what I know now.  That is where I begin my advocacy.

What we know is tremendous and the gap between what we know and what needs to be known by legislators (and the general public) is real and frustrating.   Parents and caregivers are in a unique position to identify changes needed simply by showing  up and telling our stories. In each of our stories there are lessons.  

Participating in the March and Lobby Day is an opportunity to close the awareness gap.




Links:
 #MarchAgainstED-  Updates on March Information and Activity will be posted weekly.
A Parent's experience of Lobby Day
A little perspective on how the treatment landscape has changed over the last 40+ years.  Caregivers are now part of the equation in ways we have not been in the past.
 A 'Tipping Point' takeaway:  Messages spread like viruses and operate on the '80/20" principle; whereby in any given situation roughly 80% of 'message spreading' work is done by 20% of the participants.  We can be agents of change.

Friday, August 22, 2014

Can FBT Strategies be used for early Eating Disorder intervention and prevention?

Guest Post by Lauren Muhlheim, Psy.D., CEDS and Therese Waterhous, PhD/RDN


2  Case Studies of how FBT trained clinician parents used
FBT for an early intervention.


Eating Disorders are serious mental illnesses with dangerous medical consequences.  Without early intervention, eating disorders may become chronic or even fatal.   Parents are often unaware of some of the early signs of an eating disorder.  Even if they are aware of early warning signs, they are often uncertain and reluctant to intervene out of fear of worsening the situation. 

Maudsley Family Based Treatment (FBT) is one of the leading evidence-based treatments for adolescents with eating disorders.  Studies are underway to evaluate the effectiveness of early interventions using an FBT approach. Parents Act Now is a study at Stanford for early intervention for Anorexia and Family Internet-Based Early Bulimia Nervosa Study is underway at the University of Chicago.

This paper describes how two clinicians trained in the provision of FBT applied FBT principles to help their own children who showed some very early warning signs of an eating disorder.   

The challenges of early Eating Disorder intervention

Eating disorders are notoriously hard to spot in the early phases.  Once an eating disorder has fully developed parents usually look back with regret; they often identify numerous early warning signs that they missed.  Because the signs are generally so subtle, and in many cases look innocuous or even “healthy,” most parents are not prepared to intervene.  Even pediatricians have been known to advise parents to watch and see what happens before intervening.  However, the development of an eating disorder is a slippery slope and the situation can rapidly progress from mild to severe. 

Potential subtle warning signs:
  •       Any weight loss in a growing child (even if the child was initially overweight)                     NOTE: Adolescents may lose weight for a variety of reasons; rule out other causes such as type  1 diabetes
  •      Dieting behavior or intention
  •      Elimination of foods or food groups previously enjoyed by a preadolescent or adolescent
  •      The child or adolescent skipping meals or saying he or she has already eaten
  •      Increased physical activity in a preadolescent or adolescent not accompanied by increases in        food consumption
  •      Failure to gain weight in a growing preadolescent/adolescent
  •      Slowing of the rate of gains in height
  •        Preoccupation with food preparation, recipes, or cooking shows


Children  and Adolescents Who May Be At Increased Risk:
  •       Family history of anxiety related disorders
  •      First degree relative with a diagnosis of an eating disorder
  •      Traits of perfectionism
  •      History of anxiety


Case 1:  Alexandra

“Alexandra” is the middle of three children, female age 11.5 at the time of the intervention.  She has always been very active.  She has always been a picky eater, especially with regard to textural issues; for example, she has never liked crusts on bread, fat on meat, fried food or potatoes.  She is perfectionistic and competitive.  She has tracked around the 50th percentile in weight for most of her childhood, slightly higher in height. 

Specific warning signs and indicators for intervention:

  • Over the previous two years, Alexandra’s weight percentile had been slowly decreasing (from the 35th percentile down) while her height percentile was constant at 50%.
  • Alexandra became extremely interested in food preparation, cooking, reading recipes, and watching cooking shows.
  • Alexandra’s family moved home from an international assignment (a major stressor)
  • Alexandra’s physical activity increased significantly as she progressed from recreation soccer to club soccer (the commitment increased from 2 days per week to 6 days per week).  At the same time, her appetite and food consumption did not, on its own, increase. 
  • She did not ask for more food, but she also never expressed any dieting concerns or any concerns about shape or weight.
  • On a day off school, Alexandra ran 2.5 miles, then stated she “felt great”.  Immediately afterward.  Following the run, she refused a meal of eggs (food she has never liked) and bacon (she proceeded to pick the fat off the turkey bacon because of complaints about the texture).  She was content to eat nothing when she didn’t like the options available.
  • However, she would eat foods such as desserts when offered


Parental interventions:
Parents agreed to do FBT early intervention with a focus on parents observing her eating during meals and helping her to eat enough to compensate for increased physical activity and growth. 

Alexandra’s soccer practice was often during dinner, and she would often come home tired and uninterested in dinner.  Meals for Alexandra were structured so that she had to eat before soccer practice or she could not go.  If parents did not feel she had eaten enough, they would coach and insist.  

In the few situations where there was a predominance of foods she may never have eaten (due to the textural issue), alternatives were offered to make sure she ate enough (distinct from the strategy parents used with the other children, offering no alternatives to the primary meal in an effort to promote eating flexibility).  Parents instituted regular weighings and spoke to her about their concerns. 

Results
Over a four-month period during the intervention, Alexandra gained 6 pounds even as she joined a club soccer team and increased her physical activity.  Eventually her appetite did seem to “catch up” to her need and her parents gradually reduced their oversight.  The parents believe they helped Alexandra  to keep up with her increased energy needs during this critical time period when it was observed that she was not initially doing so on her own.  Anorexia nervosa can appear insidiously in situations like this (independent of any intention to diet or lose weight), so this early parental intervention is believed to have been effective based on FBT principles. 

Over a two-year period, Alexandra gained about 18 pounds while growing 6.5 inches.   Menarche occurred at age 13.5.  At age 15, she is now fully back on her growth curve with height at the 75th percentile and weight at the 50th percentile.  She eats normally and intuitively.  It is notable that she no longer has a strong interest in cooking and cooking shows.





Figure 1:  Alexandra's growth chart.  Note the deviation from her weight-growth curve at 9.5 years and return after parental intervention.


Case 2:  Jack

“Jack” is a 15-year-old high school freshman who at age 9 months showed some early signs of food selectivity and avoidance of certain tastes and textures.  He has never shown a large growth spurt but rather tracked along the same percentiles for much of his life. By parental report, Jack has been a typical “kid eater”, preferring easy, bland non mixed foods and demonstrating food neo phobia, typical in many toddlers and young children.  

Growth charts show that from age 1 year until age 15 he was at 5th percentile for height and 10th to 25th for weight.  Growth has been consistent but the child’s pediatrician did order growth hormone levels measured which showed a normal level of growth hormone. Jack was competitive but not overly perfectionistic, yet as Jack started high school he stated he wanted to achieve all A’s for all years of high school.  His body type is muscled and not considered overweight.

Specific Warning signs and indicators for intervention:
·      
  • During the previous year Jack significantly increased physical activity; participated in soccer conditioning camps, played JV soccer for high school and recently joined a soccer club.
  • Jack was not particularly interested in increasing food intake nor did he show greatly increased appetite.
  • After 1 week of soccer conditioning he showed weight loss of 6 pounds.
  • Jack has a full sibling diagnosed with anorexia nervosa at age 13, now recovered.


Parental intervention

Parents agreed to intervene by increasing caloric intake appropriately, taking weekly weighings, and providing guidance about the need to fuel increased exercise, as well as hydrate for intense activity. Parents made sure that all meals were consumed and adjusted schedules accordingly to allow for snacks to be made and eaten prior to or just after school activities and soccer activities. He was not allowed to miss meals and snacks.

Jack did complain of feeling overly full on several occasions and parents did not give in to the desire to allow decreased food intake.  Caloric intake was increased by adding oils to foods such as pasta and rice, adding Instant Breakfast to milk, increasing portion sizes of meals, and requiring 2 snacks per day, minimum.

Results

Weight was restored within 2 weeks.  Weight monitoring continued through the freshman year of high school to ensure that Jack met expected gains in weight and height.  As weight was maintained and growth achieved according to expected gains as shown by lifetime growth charts, he was allowed more freedom to portion his foods, choose snacks, and have flexibility in terms of timing of snacks. Breakfast, lunch and dinner were usually prepared and served family style.  Snacks were usually chosen and prepared by the boy, a developmentally appropriate option when no eating disorder is present.

Two years later Jack has continued to develop normally, gaining expected height and weight. He eats a wider variety of foods and is less concerned about textures and new tastes.  Given the positive family history of anorexia nervosa it is especially appropriate to catch weight loss in a growing sibling early.  Weight loss, whether intentional or not, is a significant trigger for initiation of eating disorder pathology.


Conclusion

These two situations may have been cases of anorexia averted.  Certainly there is no evidence that either child was harmed in any way by the parents taking charge of meals for a limited time.

A common worry expressed by parents of children with early or mild symptoms of an eating disorder is that they do not want to take it more seriously than necessary.  They worry that intervening aggressively early on may somehow make things worse, that over-pathologizing will build the child’s preoccupation, and that they will waste time and money.  FBT, done in the context of the home with guidance by a therapist or other clinician with FBT training, is less disruptive and relatively low cost especially as compared to other eating disorder treatments.  FBT may be particularly potent when initiated early in the disorder.  Research indicates and our clinical experience supports that intervening earlier is much easier, faster, and cost effective than treatments for well-established eating disorders. 

We believe these case studies illustrate the great potential that FBT offers for early intervention.








Lauren Muhlheim, Psy.D., CEDS is a psychologist in private practice in Los Angeles who works primarily with clients with eating disorders. She is certified in FBT and works extensively with families in her practice. She was a founding co-chair of the FBT Special Interest Group of the Academy for Eating Disorders. She has held various positions of leadership within the Academy for Eating Disorders and currently serves as Board Director for Outreach. 
www.laurenmuhlheim.com
on facebook: https://www.facebook.com/Dr.Muhlheim; 
on twitter @drmuhlheim 


 Therese Waterhous, PhD. RDN, is a dietitian who specializes in the treatment of eating disorders and has a private practice in Corvalis, Oregon. She is the author of Academy of Nutrition and Dietetics Pediatric Nutrition Practice Group’s online care manual chapter on eating disorders and Practice Paper. She is also a founding co-chair of the FBT Special Interest Group of the Academy for Eating Disorders and is a professional advisor to FEAST. She is the Director of the Disordered Eating/Eating Disorder subunit, Sports, Cardiovascular and Wellness Nutrition Practice Group and is also Vice President, Willamette Valley Oregon Chapter of IAEDP. 
On twitter: @ThereseStorino