What about Oxytocin?

Being a “senior” and a member of AARP, I regularly receive the AARP Magazine.  The September/October 2010 issue included a short item titled “Go for the Big O.”  Since this topic still interests me, I read the brief paragraph and was reminded that oxytocin acts on many areas of the brain including the amygdala, a region of the brain from which comes the emotions of fear, anxiety and distrust.  Oxytocin, according to this article and other items, has been found to reduce those emotions and to enhance feelings of comfort and safety. 

 

After reading this, I wondered out loud on another website if this hormone could be in some way deficient in those with eating disorders especially since many (I think the figure is in the 60 percent range) with eating disorders previously were diagnosed with an anxiety disorder or had such traits.   

I also reflected I had learned in August while reading a book at my daughter’s house that human breast milk first expressed during feeding contains an abundance of oxytocin that can cause a nursing baby to get drowsy and fall asleep rather than to continue feeding.  I am aware in my family that those who have tried to nurse have had some babies who seemed more susceptible to oxytocin and who failed to thrive until they are placed on bottled milk.  I was one of those babies.  Is there a connection?

I also believe, and will discuss another time, that massage was a factor in my own recovery.  Massage and acupuncture have both been found to increase the level of oxytocin in the body.  Would the introduction of massage into ED therapy make a difference?

Does size matter in this instance?  Those with eating disorders and at least borderline personality disorder (which I prefer to refer to as emotional disregulation disorder) have been found through functional MRI’s to have smaller amygdala’s. (I need to find this article again.)   Is this important?

And finally, to raise a topic that gets some people angry and others interested because the traits seem to run in families, too, that have individuals with eating disorders, a recent study published in Nature indicates that oxytocin may be deficient in those with symptoms along the spectrum of autism disorder.

So, why did I put this word on my list to write about? Well, those with ED's tend to isolate, right? and they often are overwhelmed with anxiety, fear and distrust. 

And much to my surprise and delight, this was brought up on the Monday professional day following the NEDA conference.  Several of us parents and an accupuncturist spoke up and mentioned that we suspected oxytocin may be a factor and we wondered if any of the researchers present – Drs. Treasure, Tchanturia or Kaye – were aware of any studies or might be interested in following up with a study of their own?

Has anyone (research scientist) done a study that involves subjects with ED's taking a very small dose of oxytocin to see if it makes a difference? Has anyone followed a number of people with ED's who have received either/or both massage or accupuncture and recorded that this made a difference?

The use of a medication would need to be heavily controlled under medical supervision, it would seem to me, because I am also thinking about impulsiveness for those who also have been diagnosed with BPD and would worry that this would increase behaviors that are detrimental for them.  But maybe there's something to this?  Maybe oxytocin would help?

I hope someone passes this  question along to researchers out there.  I keep hoping there will be a medication developed or that already exists that will assist those in the throes of their ED's who once they are re-nourished will have access to a medication to help them stay in recovery.

 

Data and Long-Range Studies

I have been very excited by the media coverage devoted to Family-Based therapy, particularly the article by Roni Caryn Rabin in yesterday’s New York Times (Tuesday, October 19, 2010, on page D5).  This and other articles are highlighting the research by Dr. Daniel Le Grange and his colleagues at the University of Chicago published this month in the Archives of General Psychiatry.  Since I also subscribe to the Wall Street Journal, I was quite surprised to find a similar article in the first section of the paper – a major advance in terms of recognition of eating disorders as medical emergencies and worthy of immediate attention.

As I’ve often mentioned, I wish I had known about this 22 years ago but since I didn’t, one of my goals is to spread the word so parents of those who have developed eating disorders more recently can take advantage of this research and work to get their children on the path to recovery.

This kind of publicity ties in with the opening address made by Dr. Russell Marx during the Professional Day offered by Princeton University on Monday, October 11, 2010, following the NEDA Conference.  Dr. Marx, who was also the chair of the NEDA conference,  highlighted five points that he believes are critical for the continuing progress of research and practice in this field.

The five points are:

Educate – he noted, for example that we all have access to new information technologies and information channels that can be utilized to educate and inform.

Integrate -  too often there’s a disconnect between parents, therapists, medical doctors, nutritionists, psychiatrists and others involved in the care of one with an eating disorder.   Constant communication between and among all members of the team is critically important and all involved must be open to change and new ideas.

Advocate – this word explains the point and the more all of us step up and speak out on behalf of those affected by these disorders, the more publicity we’ll gather and the more support the field will gain.

Innovate – when one considers that it can take 17 years from the release of study results (the basic research) to the utilization of those results (clinical approaches in treatment), we need to find a way to get those ideas out there sooner to encourage further innovation based on the outcomes of experience in the clinical/residential setting.  So again I note how exciting it is that the media picked up on the results mentioned at the start of this post.  Kudos to Harriet Brown, too, for her unflagging energy to gather opportunities to speak about her new book, Brave Girl Eating, that espouses Family-Based Therapy.

Validate – so much of the information “out there” right now is anecdotal.  Some of the information, in fact, may no longer be correct.  For example, it is quite possible that the number of people dying from eating disorders is going down because of improvements (still a long way to go) in treatment protocol and insurance coverage.  More and more institutions and funding organizations are demanding outcome measures to accompany grant requests.  These outcome measures create value.

Dr. Marx noted that the Cystic Fibrosis Foundation has made huge strides in all of these areas and has data on 93% of the patients who have been diagnosed with cystic fibrosis.  Imagine if this could be done for those with eating disorders!!

Which leads me to my observation that there just aren’t enough long-range studies let alone data sets on eating disorder outcomes for patients who have sought treatment.  This information becomes especially  important when new or existing medications or techniques are used or innovations are put into practice.  Following results of the use of, e.g., Cognitive Remediation Therapy or Family-Based Therapy or residential placement where a number of different therapies are put into play at once or the use of a new or existing medication, and putting this in a database could help to speed up choices of treatment and eliminate those things that aren’t as effective.   A lot of treatment based on earlier research is occurring right now but there’s no central gathering place for this data nor probably have any standards been set so that anyone in the field can access it, understand it and then utilize it.  Doors need to be opened and information shared if we are to make progress against these deadly diseases.

Upon my return from the NEDA conference, I discussed Dr. Marx’s important talk with my husband who is an IT executive.  He alerted me to a consortium using the acronym CDISC   This acronym stands for Clinical Data Interchange Standards Consortium. “….CDISC is a global, open, multidisciplinary, non-profit organization that has established standards to support the acquisition, exchange, submission and archive of clinical research data and metadata. The CDISC mission is to develop and support global, platform-independent data standards that enable information system interoperability to improve medical research and related areas of healthcare.  CDISC standards are vendor-neutral, platform-independent and freely available via the CDISC website.”

Imagine if all researchers used these standards!!! And then worked with people knowledgeable in the development of databases to make information on eating disorders accessible to all.

Most assuredly, progress would occur much faster and the people involved in the field of eating disorders could implement advancements sooner on behalf of our loved ones. 

"I think the problem is the way I think." - Cognitive Remediation Therapy

I had never heard of Cognitive Remediation Therapy (CRT) before the weekend of the NEDA conference and I didn't even hear it first from a lead researcher and the conference presenter on this topic, Dr. Kate Tchanturia.  Rather, I was fortunate enough to encounter a nurse researcher who until recently was working at a Boston area hospital and who had already used Dr. Tchanturia's technique and materials with some of her own patients with success.  She and I spent a long dinner together on Saturday night discussing the research so I was primed to hear Dr. Tchanturia not only on Sunday but also during the Professional Day presentations on Monday.

My list from the conference includes the words "stroke" as well as CRT.  I deliberately used the word "stroke" so the reader will understand that the eating disorder adversely interferes with the brain's function  and its development.  I wanted to remind myself that the first thing I thought of when I thought of the word "stroke" was the need for a person to relearn tasks.   Portions of the brain actually shrink during starvation.    Dr. Walter Kaye presented a lot of material on the brain and I'll touch on that in a future post but right now I want to look at this technique specifically.

Many parents have heard that once anorexia (AN) has gotten a foothold, the patient cannot utilize medications well because the brain isn't working correctly.  It's not clear to me, having witnessed what can only be described as bizarre behavior,  that any therapy can really be  effective if a person is severely malnourished.   Links I've provided in earlier posts have information that indicates cognitive problems start to occur when the person isn't eating correctly.  However, studies have shown that CRT can be utilized even when the person's Body Mass Index BMI is far below the normal healthy range.

Dr. Tchanturia and her colleagues found in an initial study published in the Annals of General Psychiatry (5 June 2007),  that "...patients with AN are able to reflect effectively on their thinking style ...." even while malnourished.  The technique involves simple things as well as games that many of the participants have found to be fun.  Among them is the simple task of first writing with your dominant hand and then doing so again with your other hand.  The object, among other things, is for the person to recognize that with practice they can change the way they think.

Here is the latest paper by Drs. Tchanturia and Lock.

Imagine being able to learn to actually think differently so you're not as susceptible again to triggers that lead to anorexia and bulimia!!! Imagine if one could identify those with a potential to develop an ED (looking at a variety of factors) and provide them with tools to live healthy lives using known traits positively.

I have downloaded several papers and will be reading thoroughly about this before trying to synthesize it into a report that a non medical person can understand.  One of the comments I heard several times at the conference from different parents was they were having difficulty understanding the "science" of it all and wanted descriptions in layperson's terms.    I'm going to make an attempt at it and come back here later!  I truly think this may be a key element to a more effective recovery.

Me, myself and I - Taking Care of Myself

There have been times in the past several years when I've felt like three people .... probably even more.  Like most people, I have several character traits (more on the difference between traits and states in a future post) that guide how I live.  I've been quite driven for most of my life and tend to live life with passion that has often gotten the better of me.  This takes energy and as time has gone on, I just don't have as much of it anymore.  I look back at some of the things I did in my thirties, forties, and fifties and am amazed, actually.  What a full life I have led and am blessed to continue to lead!!!!

When I began this latest journey against a formidable foe - the eating disorder - that had taken over my daughter's life, I quickly got pulled into a storm that just about capsized my boat.  To survive I learned (and it took a lot of time and work) that I could not rely on all the techniques I'd cobbled together over the years.  I thought it might be helpful to list some of the things that kept me afloat.

I love living here in the southwest.  I moved here in the summer of 1970 and was immediately introduced to the outrageous thunderstorms that accompany the monsoon season.  Our home looks out over the desert to the south and we often get to watch these storms as they make their way with lightening, fierce winds, and often lots of dust:

 We also get to view amazing sunsets.  This photo was taken by my husband in our backyard one evening this past August:

We get to spend a lot of time outdoors.  Granted, in the summertime, that outside time comes early in the morning before the temps climb into the 100's, but for the rest of the year the seasons here are delightful.  In a later post I'll go into more detail about my own recovery but the "tools" I use include weeding, tending to our yard, bicycling,  hiking, walking, and until a couple of years ago running -- both on the roads and into the mountains, often trotting along by myself because I tend to be slower than others.  Getting away and just being, feeling myself co-exist with the elements is a rather astonishing experience and very healing.   To give you an idea, here's a photo taken by a friend of mine with whom I used to run a lot:

I also love to read, having just completed Olive Kitteridge by Elizabeth Strout read on the plane between Arizona and New York City, and now Three Cups of Tea by Greg Mortenson and David Oliver Relin, begun on the way back.

These tools help a lot but six years ago I turned to another organization here at the suggestion of a family member - Al-Anon

Most people associate Al-Anon with family and friends of those with alcoholism.  In fact, many who attend -- at least here -- have family members and friends who are struggling with all kinds of illnesses and substance abuse, including eating disorders.  I joined because I could not find a support group for parents of people with eating disorders and I didn't have the energy to start one.  The experience, strength and hope offered by the wonderful people who attend has changed my perspective and taught me a different way of living.  I'm learning how to detach with love and at the same time remain an ally and advocate so I'm available to help when the situation arises (which is still often).

I've connected with a terrific therapist whose experience includes working with people with eating and other disorders as well as the loved ones of them.  Working with her, I'm learning (everything is a process when the possibility of death is there every day) techniques to help me stay grounded and to respond rather than to react.  I find it helpful to distinguish between these two words:  react makes me think of a bubbling and at times potentially harmful chemistry experiment conducted in a lab with a hood over my head.

Other things that come to mind include spending time with my beloved husband (we have incorporated at least one weekly date night during which none of this is mentioned); with friends (God bless them all) for lunch or hikes or visits to museums and galleries which our city has many of; meditation; walking our dog; going to symphony, plays and movies, and anything else that one might define as taking care of oneself.  I've learned that the instructions by flight attendants is as important on the ground as it is in the air, which includes put on your own oxygen mask first.  I must come first.  What a novel concept.  For most of my life I did not.

Other blogs on this subject offer helpful reminders to focus on life other than the illness when having the opportunity to spend time with my family member.  Marjie Ruth, a group facilitator in Florida, sends along words of wisdom about once  a week.  I'll see if she has a link to all her posts and provide it here when I get more organized about all of this.

It's easy to get swept away by the effects of this disease and become as obsessed as the person with the disorder.  If I want to live, I need to ground myself and live mindfully in the present. I need to be at peace in myself.

Thich Nhat Hanh writes in Peace is Every Step: The Path of Mindfulness in Everyday Life,

''Peace is every step.

The shining red sun is my heart.

Each flower smiles with me.

How green, how fresh all that grows.

How cool the wind blows.

Peace is every step.

It turns the endless path to joy."

May you have a beautifully peaceful day.