Our Body's Microbial Garden

I took the title of this post from the title of an article written by Carl Zimmer that appears in today's New York Times (Tuesday, June 19, 2012, pp. D1-6) titled Tending the Body's Microbial Garden.   We can either nurture or interfere with the balance of our microbiome, a collection of apparently "....100 trillion microbes that call us home."

Just last week, the mail brought me the most recent issue of Scientific American Mind (July/August 2012).  The cover advertises that inside I'll find information about Gut Microbes Influence Moods.  Moheb Costandi, author of the article "Microbes on Your Mind"writes about, among other topics, the existence of the enteric nervous system found in the intestines that communicates - actually the neurons in the intestines communicate - with the neurons in the brain through the vagus nerve.  He notes that "by the age of three the gut contains a full complement of approximately 100 trillion microbes...."  (p. 34).

Fascinating.  Think about the presence of receptors for the neurotransmitter serotonin in the gut.  Serotonin manufacture in the brain.  Does the human body in partnership with these microbes create neurotransmitters?  Help the body maintain a healthy balance of these neurotransmitters?

Recently I bought but have not yet completed Sebastian Seung's book Connectome - How the Brain's Wiring Makes Us Who We are (Houghton Mifflin Harcourt, 2012).  Just the brain's wiring?  Something else?

Whoa!  What's going on here?  As I've learned recently at a NEDA conference from those who are doing research into eating disorders, outcomes often take 20 years to reach the public press let alone those who treat us.    Science fiction?  Fact?  Possibility? Ridiculous?

Can we shape our biome?

Our children's biome?  The answer is, in fact, "yes".  Mothers do help shape their children's biome.

Want to learn more about this?  Listen to the recent TED lecture by Jonathan Eisen titled Meet Your Microbes.

Thinking about Dr. Eisen's lecture, Will we someday be able to buy a probiotic drink like those now found in the supermarket or take a pill from a bottle bought off the shelf at the pharmacy and change what's going on biochemically or neurologically in our bodies?  I know we already can but this takes this process to another level.  Perhaps we are doing that already based on recent small clinical trials in France and Ireland that examined the antianxiety effects of probiotics.

All of this sure is interesting and with the availability of online data, shared data, grant-making bodies like the NIH that publish the data, and so forth, hopefully larger and larger strides will be made to uncover and treat illnesses like diabetes, eating disorders, autism, anxiety disorders, schizophrenia, bi-polar disorder and even the common cold, something I picked up on my recent trip.

Guest Post by Dr. Julie O'Toole - Inpatient Eating Disorder Treatment Checklist for Parents

If your child or adolescent is admitted to a hospital for the medical complications of an eating disorder, you need to carefully assess adequacy of care at that hospital.  

Common sense would dictate that we not become aggressive, belittling or demanding of professionals on whom our child is temporarily dependent for medical intervention, however you should not hesitate to inform yourself, rely on your intuition and experience and ask questions.  The days of “because I said so and I am the doctor” are gone in medicine, or should be.

There are basically two types of medical hospitalizations for eating disorder crises: 1. the emergent kind at the nearest hospital, regardless of that hospital’s specific eating disorder expertise and 2. the urgent kind in a hospital which you have sought out specifically because of their expertise in treating the complications of eating disorders.

In the first kind of hospitalization, you may need to be patient until imminent danger of death has passed and then arrange transfer elsewhere.  An example of this might be an admission to an internist, pediatrician or hospitalist at a community hospital for dehydration, electrolyte imbalance, severe inanition (wasting) or syncope (fainting).  We had an adolescent patient referred to us once whom the police had found semi-conscious at the side of the road, grossly starved and cold.  This extreme is what I mean by an emergent admission for inanition. If such an admission is needed and the hospital team does not have an AED handbook for medical care, provide them with one.

The second kind of admission (urgent, experienced or specialist hospital) is more usually done for a patient who may or may not be expected to die without such care, but who is in any case compromised medically and/or may reasonably be feared to be in danger of re-feeding syndrome if re-fed in another setting.  Such patients might be expected to meet AAP admission guidelines for orthostasis, bradycardia, etc.

The following is a check list I am proposing for parents to use in evaluating the adequacy of their child’s hospital care:

1. Does the hospital team resent your involvement as a parent?  Are you blamed for your child’s illness?  Is your hospital contact with your child severely limited?  If the answer to any of these questions is “yes”, move this hospital to the “unacceptable” pile and seek care elsewhere as soon as you can.
2. Who is principally in charge of your child’s medical care?  This needs to be an attending physician or nurse practitioner.  If it is a team of doctors who rotate, ask who will be responsible for communicating daily with you about such things as weight progress and labs.
3. How often is phosphorus checked?   This will need to be daily (or more often in the Intensive Care Unit, aka ICU) as long as calories are still being adjusted upward.
4. What does the doctor/team consider a preliminary goal weight?  Most hospitalizations are not long enough to achieve full weight restoration and ultimate goal weights usually only matter this early in the hospitalization in those cases where a need for weight restoration is ignored, for example where the doctor/team argues that the “patient’s BMI was too high to begin with” (!!).  For most patients the issue addressed under Point 5 below is much more critical.  I strongly recommend that weight goals not be shared with the pediatric patient either by the staff or by the parent.
5. Although it is common for a patient to actually lose weight for the first 2-4 days of re-feeding due to fluid shifts, after that the weight curve should be steadily upward.  Ask:  who will calculate weight gain and is it done daily?  Excellent weight gain should average 0.2 kg/day.  If it is lower than that see Point 6 below.
6. Calculating calories/food intake:  the majority of patients hospitalized for an eating disorder will have lost weight relative to their own norm.  This means they will enter the re-feeding process hypometabolic as the brain tries to conserve energy in a time of famine.  Once you begin re-feeding, however, the metabolic fires will jump up and the patient will need many more calories than ever before.  It is critical that calories/food are titrated to weight gain, so that if the rate of gain is much less than 0.2 kg/day more food will be added.  Fat must never be allowed to be restricted.  On this specific point your questions for your treatment team are:  What is the start point for caloric intake (low is fine)? How will the calories be increased? By whom? How often? And—importantly—is phosphorus checked during this time?  I strongly recommend that discussions of calories/exchanges/fat grams not be shared with the pediatric patient by the staff or by a parent.
7. How are meals supervised?  I can’t tell you how often kids report back to me that they were able to hide food or spit out medications because of a lack of adequate staff supervision.
8. Aftercare should be discussed from the outset, after about 24 hrs of hospital care.  Everyone is usually too upset for the first 24 hours to take in much information about aftercare planning, but in order to maintain the gains made in the hospital and prevent re-hospitalization, it will be important to hand-off the pediatric patient to an outpatient team whether that team is a “Maudsley” style team, a day treatment team or other.  How will the hospital team plan for follow-up care and communicate with those providers (including the family of course!)?
9. What criteria do you use for discharge?  
10. How do you monitor access to the bathrooms in the hospital so that my child is safe from exercise or purging? Experienced teams will always have a plan for this.  It matters.
11. Are patients with very low heart rates or personal histories of fainting monitored on telemetry?  We have had a handful of patients who experienced “asystole” or stopping of the heart, which caused them to “faint”.  Had they not been on telemetry we might have just ascribed this to “dehydration”. On the cardiac monitor we were clearly able to see how, in some vulnerable patients, the heart can be acted on by a simple stimulus such as a blood draw, standing up from lying down, etc. with an episode of cardiac arrest.

So to recap the questions:

1. Does the hospital team resent your involvement as a parent?
2. Are you blamed for your child’s illness?
3. Is your hospital contact with your child severely limited?
4. Who is principally in charge of your child’s medical care?
5. Who will be responsible for communicating daily with you about such things as weight progress and labs?
6. How often is phosphorus checked?
7. What does the doctor/team consider a preliminary goal weight?
8. Who will calculate weight gain and is it done daily?
9. What is the start point for caloric intake?
10. How will the calories be increased? By whom? How often?
11. Are calories increased to meet any loss of weight or stagnation in weight gain?
12. Is phosphorus checked during this time (of caloric increase)?
13. How are meals supervised?
14. How will the hospital team plan for follow-up care and communicate with those providers?
15. What criteria do you use for discharge?
16. How do you monitor access to the bathrooms in the hospital so that my child is safe from exercise or purging?
17. Do they keep their patients with bradycardia (low heart rate) on telemetry?

I myself answer these questions on a daily basis, as does my partner.  I am relieved and happy to see a parent with a written list of questions for me, as that means I can easily be held accountable for getting to all of their concerns.  Expect no less.

[Re-printed here with the permission of Dr. O'Toole who is the founder and medical director of the Kartini Clinic for Disordered Eating.]

Genetically Programmed Body Size

If you missed this post written by "Kathy" and published on Dr. O'Toole's Blog, as well as linked on Laura Collins' blog, the above link will take you to another opportunity to take a look at one mother's struggle to accept her daughter's genetically programmed body size or set point.

I remember when I was finally recovering from my eating disorder in my early thirties, I realized that I was staying healthier and thinking much more clearly when my weight stayed above a certain point.  [I try hard on this blog not to mention numbers as that can be triggering for some readers.]

When I dropped below that point, either bronchitis or a solid cold would take over and intellectually, my abilities seemed less "there."  My body spoke to me.

Even later, when I remarried and reached my later forties, my doctor was jubilant (no kidding) when I finally reached the point that he believed, based on research, etc. was best for me. 

As I mentioned in an earlier post, we're all like snowflakes; each of us is different.  Encouraging our loved ones to gain or regain the necessary weight can sometimes be really, really difficult.  But, I think (and learned), it's worth it.  Kathy's post (click on the link in the first paragraph)  illustrates the benefits of doing this and very importantly, as well, reveals her own struggles in the process.

Report - Day Two - The First Annual F.E.A.S.T. Symposium: The Map Ahead - November 3-4, 2011

Following breakfast on Friday morning, we all moved on to the ballroom to hear remarks by a panel of four women representing the United States (Colleen Wise), the UK (Rachel Polonsky and Maria FinnisChataway) and Australia (Bridget Bonnin) moderated by Susan Ringwood, the Chief Executive of BEAT as well as a member of FEAST's Professional Advisory Panel.  Their goal was to "put parent concerns and assets on the map:  the law, healthcare policy, advocacy."

(For a look at everyone serving as 2015 board members of  F.E.A.S.T., go to this link.)

After introducing themselves, each spoke of the idiosyncracies of their country's treatment policies, insurance coverage, availability of health care as well as level of care.  Insurance was not an issue in the UK or Australia whereas trying to find funds to get treatment for loved ones in the United States was described as a totally different (as we know) situation.   Colleen brought the house down by remarking she regretted that she was the only one on the panel without an accent.  Her remark actually cut the tension for we were all in for an emotional ride over the next hour while each described her personal experience.  I could see heads nodding around the room as we identified with the journeys being presented.  I could not help but cry when Colleen articulately described what happened in her household and to her daughter who was a healthy and happy teenager until she developed anorexia. 

As has happened before and I know will continue to occur, we again were reminded of the different ways that eating disorders appear with or without prior observable behaviors such as anxiety and with or without the profile that many refer to including perfectionism, obsession to detail, high-functioning, self-criticism and other traits.

Following a much-needed break, we all regrouped and were introduced to Laura Discipio (ANAD), Chevese Turner (BEDA), and Doug Bunnell (formerly NEDA; also Renfrew).   Laura Collins set the stage for an open forum with several questions:

• Why can't we all just get along?
• Do parents have a special role in identifying and challenging ideas in the professional world?
• How can parent activists work with professional and patient activists?
• Whose shoulders do we stand on? (learning from long-time activists)
• Where the the new parent activists going to come from?

These are important questions and the interest shown by those present in developing responses and thinking about the future illustrated how dedicated everyone in the room was to setting the stage for next steps.  Concern was expressed about the evident (and historical) fragmentation of the Eating Disorder community and the desire to find common ground in order to effect change.  We acknowledged again that we do not have one specific way or path and that we need to work together and continue communication among the organizations.  Suggestions included exchanging board members, looking for opportunities to partner on projects, devoting ourselves to answering the needs of families and their loved ones.  We agreed that everything is complex, that there's much to learn about the treatment of eating disorders, and a lot we don't know.  Regarding the last point of the list,  we recognized that parent activists will come and go as their lives move on.  Many are suffering from PTSD and need a break before returning to add new energy to the work of F.E.A.S.T. and other organizations.    [Many remarks were made during this session; I do hope a transcript will become available in the near future so the suggestions can be prioritized and evaluated.]

This discussion could have continued for the rest of the day, I think.  It also strikes me, as one who used to lead discussions like this, that future meetings might include a white board or large pad of paper, easel and marker to quickly write down a brief summary of different points made.  A suggestion for next year?!

This intense hour was followed by business meetings to which symposium participants were invited.  These included an International Registry Project, a Medical Education Task Force, and Australian and UK Task Forces.  I hope progress reports will be issued.  I was particularly interested in the Medical Education Task Force but needed to take care of some personal business and could not attend.

Following lunch we were summoned by chimes to the ballroom at precisely 12:55 pm to be seated to welcome Dr. Thomas Insel, Director of the United States National Institute of Mental Health and our keynote speaker.

Dr. Insel began by discussing the National Institutes and Centers of which there are 22, all funded by our Federal Government.  Their charge is to support research for all medically causes illnesses; $31 billion of taxpayer funds are invested annually.  The National Institute of Mental Health focuses on the research and SAMHSA provides the services.  Specifically,the mission of NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure.  I've provided links here to both organizations since a better understanding of their role and mission will guide those of us who need to know to whom to go for what.

Just going to the responsibilities of the Office of the Director is an eye-opening experience! And the link to the current state of eating disorders is also interesting.  Many of Dr. Insel's comments can be found on these links as well as in his blog.  Dr. Insel's recent essay titled No Health Without Mental Health is especially poignant and refers to the Patient Protection and Affordable Care Act discussed yesterday by Jeanine Cogan of the Eating Disorder Coalition.  Brain Development is his latest topic.

Having highlighted many document that provide the information Dr. Insel drew upon during his talk, I'll list some of his points I found salient to where we're going.  He noted,

We are on the cusp of a major revolution in the understanding of mental illness and specifically of illnesses such as eating disorders, schizophrenia, bipolar disorder and autism.  These are biologically based brain disorders.

One might refer to brain disorders as circuit or functional problems; an arrhythmia of the brain.

These are developmental disorders, as well.  We need to study and get a better understanding of what happens in the brain when a person develops one of these disorders especially since these disorders predominantly begin in young people with identifiable onset as early as 14 and 75 percent by the age of 24.  Since these disorders appear while a young person's brain is still developing, what does the change do to the brain?  to the normal development of the brain?

Other illnesses progress along trajectories.  Often, the symptoms we observe are the last things we know about as the brain continues to adapt until a severe stage of the disease emerges.  Clearly, early intervention will yield the best outcome.  For example, in schizophrenia most boys develop the presence of psychosis by the age of 19; girls about the age of 21-22.  Psychosis is a late stage. 

Are there similar trajectories for eating disorders?  Are there identifiable cognitive changes?  biomarkers? risks that one can highlight and address?  (Interestingly, a news item today notes Computer analysis of brain scans could help predict how serious or long term a psychotic patient's illness may become and help doctors make more accurate decisions about how best to treat them, researchers said on Monday.  In a study in the journal Psychological Medicine, scientists from King's College London's Institute of Psychiatry and University College London's computer science department found that using computer algorithms to analyze MRI (magnetic resonance imaging) brain scans can predict a patient's outcome.  "This is the first step toward being able to use brain imaging to provide tangible benefit to patients affected by psychosis," said Paola Dazzan of King's, who co-led the study.)

The study of genomics and epigenomics will yield breakthroughs within the next five years in the areas of diagnosis, treatment, and the preparation of the workforce.

Re diagnosis, previously mental illness was diagnosed by consensus.  We are moving towards gaining the  knowledge of what underlies those behaviors and symptoms.  An illustration of advances made in the field of medicine includes the fact that there are now six types of breast cancer, all treated differently.  Antibodies are developed as early as the age of 2 that lead to diabetes later on.

Believes that there may be a wide spectrum of eating disorders for which different kinds of treatment may be necessary.

Frankly, I was delighted by this observation coming from Dr. Insel since I speculated about this on my blog a few months ago reflecting on scientific knowledge provided to me by Martie Fankhauser, a neuropsychiatric pharmacist  who I consulted when I wanted to learn more about the brain from a neurochemical point of view.  Since there has been no new medication for many years to treat ED, non-medication therapy is really important.  [Note that the current estimate to develop a new drug is $1 billion.]

Lock and Le Grange have demonstrated that one can turn an eating disorder on its head using FBT.  Families are part of the solution, for sure.  Fifty percent of those who use their method recover in one year; what about the other 50 percent.  Can this be scaled up in a larger study to understand why? 

Re training - many in the field of eating disorders do not understand the concept of evidence-based treatment nor is their training scientifically based.  Change must happen.  Retraining must occur.  Perhaps an entirely new discipline in medicine will develop related to brain disorders - Clinical Neuroscience, for example.  Required re-accreditation in the field of eating disorders may be a possibility.  There is a general lack of understanding of the severity of these diseases.  Expertise is needed in the training of patients to cognitively override the diseases of eating disorders.  

Dr.Insel closed his presentation by noting that although the field has grown tremendously, much remains unknown.  [Some were able to capture his talk thanks to the live videostreaming that occurred during the entire conference. At least one section is reproduced on the Around the Dinner Table website.]

[While trawling the internet today - 12/6/2011 - I came across this vimeo thanks to the provision of it to the public by Jane Cawley.  Here Dr. Insel notes several of the points he touched on in his talk.]

Dr. Julie O'Toole, MD, founder and medical director of the Kartini Clinic, author of Give Food a Chance and a member of the F.E.A.S.T. Professional Advisory Panel moderated a panel brought together to determine where parents want the eating disorder world to go.  Dr. Insel was joined by Jeanine Cogan (EDC), Susan Ringwood (BEAT), Stephanie Bauer (Academy for Eating Disorders), and Dr. Richard Kreipe (AAP, Professor of Pediatrics and Adolescent Medicine).

Question:  How do we convey the severity of this disease without highlighting the usual sensationalistic photos and descriptions?

• Having data and stories of patients and family members.
• We need a big media push emphasizing eating disorders as a public health issue
• Our common task is to get people healthy first and foremost
• The field must partner with parents and listen to parental concerns.
• Keep the best interest of the child/young adult/adult in mind.

What other steps can be taken?

• Create a Consensus Panel 
• Develop Criteria for a Center of Excellence
• Study Sibling Risk
• Need scientific agency media push
• Train more pediatricians/adolescent specialists
• Distribute the revised AED booklet as widely as possible
• Disseminate techniques, knowledge and methods to parents

This discussion evolved into somewhat of a free-for-all and many comments were offered.  The transcript will undoubtedly add much value to the final report on the symposium.

A highlight of the afternoon was the announcement by the Board of a new "Magic Plate Award."  Laura Collins was surprised and very touched to be the first recipient.

Following another break and the raffle winner announcements (books and manuals donated by Gurze Books), a surprising number of people (given the late hour and travel requirements of many attending the conference) gathered in a smaller room to hear the stories of four recovered people who answered questions about their experiences including what helped and what didn't.  Carrie Arnold, Olympia Collins, Katie Cullinane, and June Alexander shared much about their lives when they were fighting eating disorders and offered solutions towards recovery based on what worked for them.  Questions ranged from family relationships to negotiating college education as well as treatment.  Each presented a different journey, a helpful offering towards understanding the variability of eating disorders.

I needed to leave early to join my son for dinner at Union Station.  He traveled by train down from New York City to spend some time with me - a wonderful surprise.

I look forward to next year's conference and applaud Laura Collins and other F.E.A.S.T. organizers who put together an educational and progressive experience.  I've never attended a conference quite like this before and am sure that much will evolve as a result of the discussions - formal and informal - that occurred.

Reflections on the team approach - massage therapy

Earlier, I wrote a piece on the team approach to be utilized when a person has been discharged from a residential treatment facility and clearly needs ongoing assistance in the process of recovery that often can take up to seven years.

I've also written twice about oxytocin and this hormone's potential/possible value to the recovery process.

I'm proposing the addition of a skilled massage therapist to the treatment team.  By skilled, I mean someone who has taken some sort of certification in the knowledge about eating disorders and body dysmorphic disorder that can accompany the symptoms of one with an eating disorder.

I believe that part of my recovery was thanks  to the monthly massages I obtained early in my recovery process.  To add a bit of a story to this proposal, I was a single mom at the time and could not possibly afford the luxury of a massage.  Fortuitously, my next door neighbor needed someone to haul out her trash bin and I was strong enough to do it so she paid me.  Each month I accumulated enough money to get a massage.  Touch.  How important that was.  The feeling of wellness that seemed to course through me each time.  Now I know at least part of that was due to oxytocin.  The feeling of lying there and becoming acquainted with touch on my body in a  non-threatening way.  The feeling that I was worth it.  The feeling of where my skin was and how my muscles felt being stretched.

I enjoyed a massage this week and talked about all of this with my massage therapist who is skilled in this area.  She recounted her treatment of those who needed a kinesthetic sense of their bodies.  Imagine if folks could be gradually introduced to their physical sense of self through the wise and trusted treatment of a massage therapist.  Imagine coupling this with the work being done in group and individually!

Nutrition: the brain and neurotransmitters

3/24/19

When I posted this originally, I wanted to take a brief look at the brain and in general the importance of neurotransmitters, the chemical messengers in the brain.   The most familiar to many parents on this journey is serotonin but there are other important neurotransmitters, as well, among them dopamine, norepinephrine and GABA which is really a derivative of an amino acid.  For those who want to learn more, here’s a great synthesis.

I note that serotonin is/may be familiar because one of the first lines of offense for eating disorders other than food are medications called SSRI's (or selective serotonin reuptake inhibitors) like prozac, celexa, lexapro and zoloft.  Take note, though, that many of these medications will not work or will not work effectively until the brain itself is functioning better through nutrition.

This chart linked above reveals that these chemical messengers – the neurotransmitters -- don’t just exist indefinitely in the body.  Rather, they are manufactured in the body which means we must eat foods that are known to help create these messengers.  This is why a full complement of protein, complex carbohydrates, and fats (lipids) is so very important.  We need brain food.  Our brains need on average 500 calories of glucose each day from complex carbohydrates (so the glucose is released slowly throughout the period between eating) to carry out its functions. 

The brain itself is composed of about 78 percent water, 10 to 12 percent lipids (fats) and smaller percentages of protein and carbohydrates and salts.  Again, it’s what’s in the food we eat that matters.  If, for genetic reasons, our bodies do not manufacture enough or manufacture too much of these substances or if we don’t utilize these substances or if the medications we are given interrupt this balance to our detriment, problems develop.

So, for example, for our bodies to manufacture serotonin, we need an essential amino acid.  Amino acids are the building blocks of protein and essential amino acids must come from food sources.  L-tryptophan is necessary for our bodies to manufacture serotonin.  Food sources include dairy and poultry including eggs, especially.  And, if one is taking a medication to block the reuptake of serotonin (e.g. Celexa, Lexapro, and Zoloft) so the neurotransmitters remains available to the neurons (and is therefore depleted eventually), these nutrients are even more important to synthesize more serotonin. 

In addition, remember that serotonin decreases dopamine activity in the brain so the person presumably feels more relaxed and less anxious.  However, if we aren’t eating well to produce the serotonin in the first place, our levels will drop and dopamine, that is manufactured by the body and that is also stimulated by caffeine and nicotine, for example, will predominate.  Excess dopamine can cause anxiety, insomnia, shaking, increased blood pressure, irritability and anger among other things.   Folate and Vitamin B12 are also required for the manufacture in the body of neurotransmitters.  It all works together and an imbalance can cause havoc.

Moderation and a healthy food plan is key.  As material provided by Martie Fankhauser indicates and as the Maudsley Method advocates, “….Work with the healthcare professional [in this case your loved one’s entire team] to be sure that nutrition, sleep (to help the body manufacture more neurotransmitters), exercise (to activate neurotransmitters and to convert melatonin back to serotonin), sun exposure (to combine with cholesterol to manufacture Vitamin D) and hormone balance are brought to maximum potential.”

For me specifically (anorexia/subtype bulimia), I figured out and Martie corroborated this for me in detail, that to prevent the urge to binge and purge, I needed to eat a full breakfast that did not include simple sugars but rather included a good balance of protein, complex carbohydrates and lipids.  I chose eggs and dairy for my protein and lipids as well as fruit for complex carbohydrates.  Later in my recovery when I gained confidence that this method worked, I added whole grain bread and higher protein cereal.  I avoided anything “sugared.”  I also made sure to supplement this with my vitamins and minerals and during the day snacked on foods that would not spike my sugar but rather would introduce, through complex carbohydrates and protein with lipids (like peanut butter), nutrients gradually during the day.   I frankly didn’t know what I was really doing at that point from a nutritional standpoint, but it seemed to make sense so I did it.  I am not saying this will work for everyone with bulimia, either, since we all are different.  But, it’s worth investigating as part of the package.  And, as I’ll mention when I talk about serotonin, there is a serotonin receptor in the gut that encourages vomiting when one creates too much, perhaps from overeating.  One can wonder if our ancestors developed this protective mechanism to avoid becoming too overweight, therefore slower, and therefore unable to go out to hunt and gather.  I hope more research continues about this very interesting neurotransmitter that is so important to bodily function.

In the Spring of 2007, when my loved one was rapidly losing ground and I was convinced that something was going on besides “just” starvation, I learned about the National Alliance on Mental Illness from a friend whose adult daughter was also struggling with a brain disorder.  NAMI maintains a terrifically informative website on which you’ll also learn about a class offered by chapters nationwide called NAMI Family-to-Family Education.  I signed up for the class and was taken through an immense amount of valuable material by two women whose family members had brain disorders and who received training to help us new parents navigate the mental health system with tools and understanding.  We all became educated advocates as a result of this class.   

I would highly recommend it to anyone whose loved one has an eating disorder because eating disorders have been shown to be the result of brain dysfunction, too.  There is a lot of stigma associated with mental illness.  We must get beyond that if we are to help those whose brains aren’t working “right.” 

 

In addition, as I’ve written before and others are emphasizing as well, if upon return to (through testing) that nutrition is maximum but behaviors regarded as abnormal or unusual (as was the case for my loved one) are still continuing, then it’s time to get another psychiatric opinion (or more) to evaluate if another brain disorder is present (what’s known as co-morbidity) in which case the eating disorder may have been your loved one’s way of coping with other imbalances such as an anxiety disorder.

A good example of this compound issue is Marya Hornbacher whose memoir Wasted  (Harper Collins, 1998) was followed ten years later by her book Madness (Houghton-Mifflin, 2008) in which she reveals that she was later diagnosed with Type 1 rapid-cycle bipolar disorder.  Hornbacher's memoir builds upon and adds important information to the earlier published and insightful memoir by Kay Redfield Jamison titled An Unquiet Mind (Vintage Books, 1996).

The fourth week of the NAMI class was devoted to brain biology and the underlying reasons for brain disorders from a chemical point of view.  Each class lasted a couple of hours.  I think it would be helpful for NEDA and other groups that offer conferences on eating disorders to include this session or one like it to educate parents about the workings of the brain and why nutrition is so very important.

Here is a very simple brain map on which you can click to illustrate which areas of the brain are keys to behavior and abilities.  Carrie Arnold's book Decoding Anorexia - How Breakthroughs in Science Offer Hope for Eating Disorders (Routledge, 2013) offers a detailed and in layperson's terms the functions of the different areas of the brain.  More recently even more details have been learned by those studying fMRI brain scans.

Clearly, if the brain is starved (remember, the brain itself needs 500 calories each day to function and it needs the neurotransmitters, that are dependent on nutrition and synthesis by the body, to work), everything falls apart.  If the brain’s chemicals are all messed up by binging and purging (electrolytes and nutrients are vomited  which means the body/brain regulatory systems in their frantic efforts to bring the body back to balance start setting off alarm bells)  biochemical balances that are also key to everything working right are disrupted, too.

Wise nutrition is key.  

When the Financial Well Runs Dry

This post will be updated occasionally as I continue to find sites and references.  The piece includes comments following the financial section re obtaining care.
[March 2019]

I celebrated when I heard the news that with the passage of the Health Care Act, families can include their dependents on their health care plans for a longer time - until age 26.  And, your son or daughter does not need to be living with you in your home, either.  I've noticed that some private plans and the State of New Jersey (at least, there may be others) actually already extend that age until 30.  

Now, of course, one of the remaining hurdles is to provide parity in health coverage for those with brain disorders/mental illness including eating disorders.  The Eating Disorder Coalition and others are working towards that goal.  A recent decision re Wit v UnitedHealthCare written about by Steven Dunn on his blog www.adadsjourneywitheatingdisorders.home.blog  addresses this case and its ramifications.

On the insurance point, incidentally, Susan Maccia wrote an article for the Parent and Family Network Newsletter Fall 2011 issue titled, Insurance 201:Single Case Agreements outlining how to obtain special clearance for out of network treatment or out of state (e.g.) treatment.  There is precedent for this, even within Medicaid.

Here's a link to one woman's successful journey to effect change in her state (Missouri) as well as to obtain treatment for her daughter.  Annie Seal's story provides important tips on how to proceed.
 

In the meantime, and until your state or country enacts changes in the law to require insurance companies to pay for whatever treatment is necessary, what's a family to do when private health care coverage is not available for their adult loved one?  The Wall Street Journal among other media has occasionally run articles about people who have needed to declare bankruptcy upon exhausting all their funds.  Other families, whose members have working years ahead of them, have  chosen to completely decimate their retirement plans in favor of keeping a loved one in treatment.  What about people who are still in this battle and are retired or disabled themselves or literally cannot afford to exhaust their retirement funds.  What are other possibilities?

The first is to sit down and take a complete look at your financial picture and your age and ability to keep working.  If you're reading this, you have access to a computer and to sites like those offered by eg MetLife (there are many more and this is not an advertisement; I just happened to see it in the paper) or you can purchase software like Quicken  that has a planning retirement function to analyze what you'll need to live on post-retirement. 

This is an important step, too, because you need a complete picture with which to work when you do negotiate with residential facilities, many of which have funds set aside to help families whose means are not sufficient.  Do not hesitate to ask for help and be sure to factor things in like support for another aging family member or one with special needs.

The next is to consider treatment loans.  There are companies in this country that will work with you to finance long-term treatment.  Your doctor's office or local hospital may have literature about available loans.  edreferral.com provides all sorts of information about obtaining financial support - loans, trials, even free scholarships for the treatment of eating disorders including much of what I write about here.  For example, the non-profit organization called Project Heal also raises funds to provide assistance, if possible, to those who need it. 

A  legal ruling in New York State (legal work done by Kantor and Kantor) opens the door for support for nutritional counseling for those with eating disorders.  

At some point, there comes the time when other resources need to be considered and among those available for adults is Medicaid, SSDI and SSI, and other benefits at the State and Federal level such as Section 8 Housing and food stamps as well as private sources such as Catholic Community Services and similar church-run programs.  The Salvation Army is a resource, as well.

Your adult loved one may be eligible to apply for SSI (check on the asset limitations) or SSDI which can take time but is worth the time and paperwork. S/he should be able to find an attorney who will do this for her/him pro bono and as a compensation will receive a percentage of the declaration of support which usually is retroactive from the time your son or daughter sank into this quagmire of an eating disorder. The attorney will help your son/daughter figure this out as part of the application process.  A judge will have the final say. It's possible on at least the first go-round that the judge will deny your application. Your loved one (and you) needs to know not to give up! The attorney should know this, too, as it is not unusual.

In the meantime, if necessary for your family encourage your daughter/son to sign up for Medicaid which should be available to her/him as a low income/no income individual.  If your adult loved one has worked, s/he probably has paid into the system through payroll deduction and is eligible for these kinds of benefits. Some states offer a low cost health insurance program with a very small co-pay if the person is not eligible for Medicaid.  Many states are struggling with their own financial issues  but it's worth it for your loved one to pursue all these angles.

Once your daughter/son, should s/he choose to apply, is ruled eligible to receive SSI and begins to receive the financial assistance, her/his medicaid health coverage usually becomes part of this entire package.  Keep asking questions.  All states are different.

Your daughter/son may also become eligible for what's known as Section 8 Housing. The application process for this is also long and tedious but ultimately the cost (the rent) is subsidized.  The waiting period can be very long, however. 

Until your daughter/son obtains all/any of this assistance, s/he is going to need to find a place to live if s/he doesn't have one or cannot live with you (for a variety of reasons). S/he or an advocate (usually you) will want to check out long-term group homes or  shelters for those who have brain disorders/mental illness. If one is assigned, her/his mental health provider can help her with this. Usually these places are locked up at night and have someone who leads group sessions and that sort of thing during the early evening. Since they are run by non-profit organizations, there is usually oversight and rules. Often there are chores, so to speak, that they are assigned to do. Other options of course are group homes identified by a mental health provider or friends who are willing to share their home with your loved one for a low rent payment.  The Gospel Rescue Mission is an example here in Arizona.

Your loved one's journey may have included what is known here in Arizona as Title 36 procedures.  Depending on your State's laws, it may be possible for you to have your loved one picked up, taken to a hospital, and legally evaluated for their danger to self.  Some states prohibit this; others have a set time-line during which the person is evaluated.  

If the decision is to keep the person because of their mental/physical state, there is a time period within which next steps must be taken including a decision for a hearing with a judge.  These steps include a more thorough evaluation of, for example, their danger to self.  I'm keeping this general because there's so much variation among states.  

Ultimately, there is the possibility that the judge will rule the person to be SMI, meaning Seriously Mentally Ill, at which point the person can be assigned to a mental health provider that is by law required to oversee the mental health care and treatment of the individual. The judge's ruling may include Court Ordered Treatment. This can include treatment in a residential facility, especially if a precedent has been set.  Again, the laws vary as do the facilities.  Even where I live, those familiar with ED treatment know to which hospital one should take your loved one where they will encounter hospital personnel who are familiar with eating disorders and who are more likely to follow through with commitment and a thorough evaluation.  As I've said before, others are more inclined to simply provide an IV, stabilize electrolytes, and turn the [emaciated and endangered] person back out on the street.  I cannot begin to tell you what it feels like as a parent to watch a facility keep a loved one for only two hours in spite of the person's obviously emaciated condition and then release them.

As more information about eating disorders goes mainstream and doctors and other people in health care are educated, I believe that better and longer treatment will become available. 

Once the Court has declared your family member to be seriously mentally ill, the next step is to find a facility that has a contract with the State for this kind of treatment.  Often one does not exist.  Contact your state legislator or representative for help to find out more information.  If the person is under the age of 18, precedent may have been set by another person needing treatment for the person to travel out of state to good facilities that will accept Medicaid.  Florida, for example, has done this.  Arizona has in the past, as well. These arrangements are known as single case agreements.

Our local mental health community has collaborated in the development of a Crisis Response Center (CRC) at a local hospital where people can go for immediate help and evaluation.  Perhaps yours has done this, as well.  

Some law enforcement agencies require officer training to include working with people who have brain disorders/are mentally ill.  Others do not.  It's important for you to know what is available where you live.

Bridging the Research-Practice Gap

The title of this post was an important focus of the recent National Eating Disorders Association conference held in October 2010 in New York City.  The title of the post is also part of the title of an astonishing new addition to the literature available in the field of eating disorders.  Published by Elsevier, Inc. (Academic Press is an imprint of Elsevier) this year (2010) and edited by Margo Maine, Beth Hartman McGilley, and Douglas W. Bunnell, the book Treatment of Eating Disorders: Bridging the Research-Practice Gap should be (I wish) a required purchase for everyone in the field.

A couple of years ago I read Tipping Point:How Little Things Can Make a Big Difference by Malcolm Gladwell.  I believe we are either approaching critical mass or have reached the point where enough people are paying attention, where enough people are passing along important information to others, where enough people are printing information in major periodicals that in total reach millions of people..... I could go on.  Gladwell's thesis is that a lot of very small actions or changes can lead to major change.  He delves into the facets of his topic and notes certain conditions that he believes must exist as well as the different types of "carriers" that must be present.  It's an interesting read.

Now, we need enough people, so to speak, to reach into their pockets -- corporate or foundations or people -- to fund studies such as that by Dr. Walter Kaye who now has DNA samples from more than 4000 people with ED and their relatives as well as a lot of information about their behavior.  

[I think it may be time that I take a look at his and others' work.  I've been reluctant because most who call out for help are more interested in the "how do I help this person get well."  The question, "how did this happen" is multifaceted and it does involve genetics, especially involving the brain.  I also think that once cognition has improved for patients, that they as well as their parents need to get a grasp on how the brain works to work together with their brains and body to get well.  There's a great book about this concept, too.  I need to find it on my bookshelf.]

I'll get back to my original point in a moment but I do want to say that Dr. Kaye does need funds to support the analysis of the data his team now has.  More on that in a post of genetics.

So back to Bridging the Research-Practice Gap.   This book is current.  One of the laments often expressed during the NEDA conference was the time it takes to get from publication to use of the information by the team of someone with an eating disorder.  This book literally speaks to that.   The great thing (one of, anyway) about this book is that the chapters are written by many different people so the reader can select a subject and get a good handle on an aspect of eating disorders.  For example, in the Overview Section, Margo Maine and Douglas W. Bunnell lead off with "A Perfect Biophysical Storm: Gender Culture, and Eating Disorders (p. 3)". I have already read two items in Section III (Special Populations); one titled "Borderline Personality and Eating Disorders: A Chaotic Crossroads" (p. 217) by Randy A. Sansone and Lori A. Sansone and a second by Amy Baker Dennis and Bethany L. Helfman titled "Managing the Eating Disorder Patient with a Comorbid Substance Use Disorder (p. 233)."  Amy Baker Dennis presented these two topics at the NEDA Conference in October and her and others' thoughts are represented in these two sections.  There's a section on Family Issues including thoughts written by well-known people like Kitty Westin whose family won their case against Blue Cross/Blue Shield after their daughter died from the effects of an eating disorder and before adequate treatment was approved by their insurance company and who used the funds to establish a Foundation.

This morning I read another chapter in Section V (Mind, Body, and Spirit) by Kimberli McCallum titled "The Case for Integrating Mindfulness in the Treatment of Eating Disorders" (p. 387).  Outstanding!!!!!  A thorough look at the theory and practice of mindfulness and how important learning this technique can be for one in recovery from an eating disorder.  I loved it. I think everyone should learn this technique, actually, which is why I love Thich Nhat Hahn's many books.

Unfortunately this comprehensive volume is rather expensive but I would call it State of the Art and a must read, chapter by chapter.  I've learned one can save a fair amount of money by ordering it from Amazon.  Perhaps others will begin to discount it to encourage a wider readership. 

Dental Issues for those with Eating Disorders

Updated 3/27/2019

To start the discussion, this terrific article was shared with everyone by the author of the Facebook site, "A Voice in Recovery," a site that I recommend to those with loved ones fighting an eating disorder.

The article appears on the PR Newswire so if it disappears as a connection to the link, I'm posting a few comments here because I suppose you could call me one of the poster children for those who have recovered from an eating disorder.  

All these "secrets" I am sharing about myself here...  The thing is, one is only as sick as one's secrets as the saying goes for those not in recovery and again, if I can get one more person to seek help for their eating disorders, that's one less person who at the least will suffer from dental erosion and at the most die.

To quote the first two paragraphs of the article,

"While the connection between oral health and systemic health has been well-established, what most people don't know is that dentists often are in a position to detect systemic conditions.  According to an article published in the October 2010 issue of AGD Impact, the monthly newsmagazine of the Academy of General Dentistry (AGD), dentists may be the first health care providers to notice evidence of an eating disorder, such as anorexia nervosa, bulimia nervosa, binge eating disorder, and pica.

"That's because the first signs of an eating disorder can manifest in the mouth.  Sensitivity, tooth erosion, dry mouth, a high number of cavities, and enlarged salivary glands that cause swollen cheeks are signs that a patient may be suffering from an eating disorder."

Incidentally, a number of anti-depressants that are prescribed for those with eating disorders also can cause dry mouth, creating a perfect environment for tooth decay.

My situation was compounded by my early-1950's life in the jungles of South America where we could not get fresh milk (the cows were found to be tubercular) so we had to drink KLIM, powdered milk that came in a can that one would mix with water.  We kids drank other things, too, like UVA, a delicious grape soda or limeade right off the trees with lots of sugar.  A recipe for disaster.  On our first return trip to the States, my mom took us all the dentist and I was found to have fourteen cavities and this was pre-eating disorder!!!!!  Those were the days of the drill bit and no high tech stuff like numbing the gums before the novocaine injection, either.  As you might imagine, the dentist's was the last place I wanted to go for a very long time.

Fast forward to high school when I started binging and purging as well as restricting.  Now my stomach acids started to do their thing and worse, I would brush my teeth immediately after binging only to learn years later that brushing on an acid covered surface erodes the enamel even more.  So, don't!!!  As the above linked article notes, swishing out one's mouth with water to reduce the acidity is very important. 

Most of my teeth now have had root canals and most are capped.  If I suddenly had the genie in the bottle appear before me and ask what I might want for my three wishes, one would be an entirely new set of teeth. 

Take your child to the dentist or suggest to your young adult that a trip there is imperative.  Have them read what I just wrote.  A smile and good alignment is worth more than one ever can imagine, especially in the job market, and especially when you get out the check book to pay for the work involved to restore your teeth.

Consider, too, that teeth are part of the mouth/jaw structure.  One's bite can be severely affected by missing teeth.  Replacement with implants are expensive but do help.  Dentures work but aren't the same.  Take care of those teeth!!!

P.S.  My dentist has recommended three things to use to counteract the dry mouth effect of a medicationI am taking and all of these are available over the counter at your local pharmacy without a prescription:  a dry mouth mouthwash (there are two brands on the market and I noticed recently that the pharmacy has its own less expensive brand), a dry mouth toothpaste (this can be price-y but still worth it and also the same brands) and third an anti-cavity alcohol free flouride rinse to strengthen your enamel.  Note that the recommendation is for alcohol-free because alcohol-based rinses further dry out the mouth.  The kids version is alcohol-free and works just fine.  Also, keep your mouth well rinsed with water to keep it wet. 
 

Speaking about chemistry, what about Aspartame?

Everywhere I go, whether it’s out to eat, to the grocery store, or to a corner gas station with the ubiquitous coffee pot, I see packets of sweeteners.  A key ingredient of some is aspartame.  When I visit MSNBC to catch up on the news, I invariably see advertisements for the latest way to reduce tummy fat or lose those extra pounds.  At the grocery store the check-out aisle is lined with magazines purporting to give the reader the secret to a flatter tummy, thinner legs, whatever.  Our country is in the midst of an anti-obesity campaign that is well-intentioned but at what risk to those with eating disorders?   

My mother’s elegant china set given to her in the 1940’s sits in my cabinet with dinner plates almost a third smaller than the set I bought 18 years ago.  Portions at restaurants are always big enough so either my husband and I can share a dish or we inevitably can each take home half of what we were able to eat to enjoy the rest again the next night.  We join friends for meals and watch them order diet sodas along with fries and a sanchwich or coffee with artificial sweetener and a sweet roll.

But the kicker for me is watching someone I love drink 40 ounce diet drinks at least two to three times a day and add packets of aspartame to the soda!!!  Or put several packets in a cup of coffee.  I know that other parents watch their children with eating disorders guzzle diet soda.  Jenni Schaefer talked about her diet soda habit in one of her books. 

What we parents do get is that they are using the fluids of these kinds of drinks to ward off hunger.  This happens several times a day which means that the intake of the artificial sweetener far exceeds whatever the industry presumed when they tested these products for safety.  And, I think more is going on and I am very alarmed about it.

We all have a “reward center”, to put it in the vernacular, in the brain.  Many of us have heard of dopamine or endorphins, chemicals that make us “feel good.”  These chemicals are released for a variety of reasons and affect other levels of other chemicals in the brain, too.  More research is illustrating that the sense of sense of sweetness is rewarding.  In fact, our bodies need sugars in order to function.  The brain consumes about 500 calories a day, most of it in the form of glucose, a sugar.  (Even the Resources for Science Learning article is linked to diet information!)

But what happens when one consumes aspartame?  Does it activate the reward systems?  Does the body know the difference?  Research varies as the links illustrate.

One key question for me is, is this stuff addictive?  I think so.  I do not know if it’s addictive because of its basic chemistry or because the person who gets hooked on it keeps craving more to satisfy the sweet sensation the brain reports while the brain also recognizes that it’s not getting calories.

Other questions include, does aspartame and its by-products harm the brain (other than the fact that a person avoiding sugar along with calories starves the brain)?   Is one more susceptible to addiction to aspartame, the more one starves?

These questions need to be answered.  The average person does not need diet soda.   I’m not sure anyone does, actually.   The industry believes we do and uses billions of dollars in advertising to persuade us to believe we do.  But, we don’t.  Water is life.  Drink that instead.  In moderation.  Moderation….. more on that next time.

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.

 

Food first

In her book Give Food a Chance: A new view on childhood eating disorders, Dr. Julie O'Toole of the Kartini Clinic in Portland, Oregon writes (p. 109), "A solid understanding of the effects of starvation in humans is essential for any physician who cares for patients with anorexia nervosa and other wasting disorders of childhood and adolescence."    How many doctors, therapists and others involved in the treatment of a person with an eating disorder know what happens to a person when they starve?

The obvious answer is that they noticeably lose weight.  But that's not all that goes on.  A fascinating study was begun in 1944 at the University of Minnesota known as the Minnesota Starvation Study.  It culminated in the publication of the results in 1950 by Ancel Keys and his colleagues. Here's a brief summary.  Indeed, it's a medical emergency.  Major changes occur not only in the body below the neck but also in the brain and with those come behaviors that interfere with life and if not interrupted, can lead to death.  Here is a list  provided by the website Something Fishy of things that can happen/are happening.

So how in the world does one encourage a son or daughter to eat when that person is scared to death of food or even has discovered that by withholding food or vomiting food they actually feel less anxious and are loathe to eat as a result?  What do you do when your kid just sits there and refuses to eat?

One solution is to work with your insurance company to get them admitted into an eating disorder residential facility or if their condition is more grave, first into an inpatient setting in a hospital or eating disorder facility.  If you can afford to go this route and/or if your policy will cover this kind of care, it's important to note that research indicates for a behavior to change/habit to change, one needs 5000 hours to accomplish  it.  Many insurance carriers balk at anything beyond 45 days; others will go as far as 60 days and a very few will extend coverage to what I consider to be the bare minimum, which is 90 days.  Five thousand hours is longer than that.

What if you don't have insurance?  What if your carrier doesn't cover eating disorders which are classified under mental illness?  Be prepared for a shock.  I sure was.  The first time I had to work with a carrier was about twenty years ago as a single mom when the cost was $1,000 a day and the theory was that 30 days would be enough.  Interestingly, the lower end of the cost hasn't increased that much and, in fact, some facilities charge less if the family is paying cash.  But ordinarily one can expect to pay anywhere from $1,200 to at least $2,500 a day and even more if extended intensive care hospitalization is necessary.

That's a lot of money when you consider that changing a behavior takes quite awhile.  What's an alternative for at least the nutrition piece and your loved one is still living at home?

And, besides, this is your kid.  Do you really want to send them away from home?

One alternative solution is undertaking this very challenging task at home around your own dinner table.  You might have heard about the Maudsley Method (Janet Treasure et al).   This is also referred to as Family-Based Therapy that incorporates not only eating at home but also involves the entire family.  I've written about this in an earlier post.  Recently the media focused on the results of a study that even made its way into the first section of the Wall Street Journal! This is not easy and the family will need to make some major adjustments.  But, for those who can, it's an incredibly important first step towards recovery and it's been proven to be an effective.

Harriet Brown writes of her family's experience in Brave Girl Eating.  One of the first books I read in this later phase (since 2002) of my involvement was written by Laura Collins titled Eating with Your Anorexic.

For a variety of reasons this technique may not work but it's worth at least investigating if not attempting especially if you remember the words cool, calm and collected.

Two organizations maintain websites to which one can go for help.  One is Maudsley Parents and the other is F.E.A.S.T. reached through Laura Collins' website and more directly through this link.   You'll find tips, recipes, and experience; links to blogs; the opportunity to join a roundtable discussion, and experience strength and hope.

Note that I said "first step."  The result is a better nourished person but is the person ready to face the world?  Are there other things that you can do during recovery?  More on this coming up.

Remember this is a process.