3/24/19
As many of us have learned, unless you live in a city or area that offers a hospital with an up-to-date eating disorders treatment facility, when your family member's [FM] electrolytes are found by lab work to be dangerously low or his/her behavior indicates something is awry, the place to go for help is the nearby hospital emergency department [ED]. There one can obtain a lab order for blood work and, if necessary, electrolyte replacement and professional attention as well as admission to the hospital. This important visit can be life saving. A process to streamline this is needed. Better yet, would be a clinic or hospital wing with staff trained to provide immediate care.
However, since the ED often has a line of people waiting for care ranging from things (observed this most recent visit) like uncontrolled vomiting, pain from kidney stones, high fever and coughing to broken limbs, heart attacks and concussions, the practice is to triage each patient. This process evaluates the person and the immediacy of his/her need for attention. In other words, just because you came in before the next person does not mean you'll be seen before that later arrival. Then the person is seen usually by a nurse practitioner or doctor who places orders for procedures. These first two steps can sometimes consume at least an hour or more of time. The lab order needed requires a ready phlebotomist to draw blood and the lab analysis can take an additional 30 minutes or more. Next steps can be delayed even further if the ED doctor(s) have many patients and have not been alerted to the results.
As those of us have learned as we support our FM, many times there's nothing "visible"
during triage to evaluate their place in line unless our FM has collapsed and been taken to the ED by ambulance. Even then, as I have again recently been reminded, that method of transportation does not guarantee immediate action because there's still the question, "why are you here"? In one instance, for example, FM was slurring her words and the ED doctors accused her of drinking alcohol when in fact her sodium level was 119. Fortunately FM was alert enough to strongly object to the incorrect diagnosis and knowledgeable enough to demand a blood draw because FM knew what likely was wrong. Perhaps a medical ID bracelet would be a good idea?
Having observed all of this many times, I have made certain that we have information in hand that can potentially speed up the process from triage to electrolyte replacement. The most recent visit still took more than 3 hours from triage to set up, a time delay which could mean the difference between life and death for someone whose system cannot tolerate dangerously low levels.
Following is a suggested process that could be implemented at a hospital ED. I have found it helpful to bring along a copy of the Academy of Eating Disorders Guide to Medical Care that provides critical points for early recognition and medical risk management in the care of individuals with eating disorders. You can access this guide here, download it and print it or you can order copies from the AED (see the website for more information).
(1) your family member with an active eating disorder, for example anorexia subtype bulimia involving starvation combined with binging and purging or water loading (meaning drinking water prior to being weighed to increase his/her weight or even drinking water to feel full), needs to have a standing lab order in place from his/her PCP for at a minimum a Basic Metabolic Panel taken at least every two weeks and perhaps more often.
(2) The laboratory that receives the standing order must provide you or if an adult, your family member, as well as your doctor with the results immediately if a dangerously low reading is obtained. Be aware of what low levels are. This report needs to be available electronically, if possible, so you can download and print the results to take to the hospital ED. Time can be of the essence. The report may indicate "LL" for very low level. Often the report will highlight low level items in a separate list on the report.
(3) if you/your family member are alerted that the levels indicate immediate electrolyte replacement, upon arrival at the hospital ED, during triage provide the lab report and highlight the low electrolyte information. Often I have learned the low numbers do not trigger the response you hope for so if I am present (and if not my FM knows to say) I call attention to the number and now state, "I need a phlebotomist to perform a blood draw and electrolyte replacement as soon as possible, please."
(4) Next step is with the medical professional who orders the necessary lab draw and any other tests or alerts deemed necessary. Often, because ED's are usually very busy, FM will be told to go back out into the emergency area to wait rather than taken to a room. If so, please encourage FM to stay put and within earshot to hear his/her name.
(5) FM is taken to a room or bay area and preparations are made to draw blood and to have an IV port inserted for administration of fluids with electrolytes. The blood draw specimen goes to the lab. Expect an additional wait of 30-40 minutes at this point.
(6) if the levels of both sodium and potassium are unsafely low (my FM once had a low of 115 for sodium (Na) and the hospital called me and prepared me for her possible death before I got there) your FM will receive the necessary electrolytes by IV. It's extremely important that the sodium level be increased slowly and carefully (this information is explained in the above booklet). In my FM's case, she is unable to tolerate the pain caused by IV administration of a potassium solution and demands an oral solution instead. NB - if your FM is known to self-sabotage by purging whatever s/he is given or drinking water from the faucet in the bathroom, alert the staff and request a commode in the room. Ditto if the FM requests food once food and drink are permitted. Your FM may be attached to a heart monitor especially if the potassium reading is dangerously low. Years ago (2011) FM was mistakenly given a sodium solution for several hours and her levels went far above normal. Fortunately there were no side effects possibly because FM's system was accustomed to these huge swings. You can learn more about this at the link eating disorders and central pontine myelinosis.
(7) if the level of eg potassium was found upon admission to the ED to be 2.5 or less, the ED personnel should request a followup blood draw before discharge from the ED or admission. I now always ask for this blood draw especially because our FM gets the solution orally and if the ED is inclined to discharge him/her directly home rather than admit her/him to the hospital.
(8) if levels were found to be very low, best practice would be admission to the hospital floor and oversight administered by a hospitalist who is well-versed in the care of someone with an eating disorder. Most recently my FM was very fortunate to have a hospital floor nurse who knew immediately that another blood draw was needed to establish next steps. Again, the booklet will prove very helpful. The goal at this point will be to stabilize your FM and increase his/her electrolyte levels to the minimums and develop a plan for discharge and follow up with his/her PCP.
I also recommend (and have been distributing) the recently released (Routledge, 2019) book Sick Enough - A Guide to the Medical Complications of Eating Disorders by Jennifer L. Gaudiani MD, CEDS, FAED. This has been at considerable expense to me but I believe that in addition to possibly saving the life of my family member, the book just might educate other medical professionals who have the curiosity to learn more about eating disorders. I have learned here in Tucson that many doctors, even those attending in local psychiatric hospitals, have received minimal training in the medical aspects of eating disorders, nor have they a reasonable understanding of what goes on in the mind of someone fighting an eating disorder.
Information is provided about eating disorders, particularly of adults, to parents and other loved ones written by a parent who is in recovery from an eating disorder.
Welcome
When I created this blog, I was "getting on" in my early sixties, hence the blog name. However, my adult daughter's eating disorder and co-occurring emotional dysregulation disorder and other co-morbidities - ongoing for about 33 years - became and was our focus as we attempted to help her get into recovery. By learning about, reflecting on, reading about, attending conferences and writing about eating and brain disorders, I created a place to blog what I've learned. I hope this blog will be of use to others, especially families of and adult sufferers themselves to help them get into recovery. I update posts from time and the update date will be present at the top of the post.
Sadly, my daughter passed away in early October 2021 mainly because her body became so malnourished that she was immunocompromised, contracted a severe infection that was not properly addressed during an earlier hospital stay the month before, and developed an overwhelming non-covid pneumonia following surgery to save her life. I believe she should have been able to receive palliative care but Arizona, our country, and even the professionals trained in the treatment of eating disorders, particularly anorexia, are not "there" yet. I address the issue of palliative care in a recent post below, initially written in November 2021. I am not a certified eating disorder specialist. I am an Expert by Experience and college-educated with a BA in Community Work with an additional certificate in a one-year program in Business Administration from the same institution.
I am passionate about all of this because, as Shakespeare wrote in The Taming of the Shrew, Act 4, Scene 3: "My tongue will tell the anger [and sadness] of my heart or else my heart, concealing it, will break. And, rather than it shall, I will be free even to the uttermost, as I please in words."[2016]
Travel Guide
If you're new to my blog, I recommend you begin on the right side and take a look at the "Of Note" offerings. Read Dr. Cynthia Bulik's recent published interview (5/4/22) "Rethinking Eating Disorders" if you want to print an easy-to-understand professional's expert opinion about anorexia for your family doctor or the therapist. [Early intervention is absolutely critical. For those whose eating disorder is categorized as entrenched or severe and enduring, read the editorial comment by Stephen Touyz and Philipa Hay for a new approach about treatment. It is possible for your loved one to recover! I have also attached a link here for additional papers on the subject of severe and entrenched eating disorders. If you are a family member or friend of an adult with an eating disorder and have been at this for awhile, I refer you to the posts within the title "Adult Eating Disorders and Recovery Tools" found in the Index on the right hand side of this site. As well, in the "Of Note" section take a look at those posts with an asterisk. If you're a parent and need support, look for posts in the Index about parent support or parent toolbox.
In my opinion, the best book to buy, to refer to constantly and to share with members of the medical/psychiatric profession is "Sick Enough: A Guide to the Medical Complications of Eating Disorders" by Jennifer L. Gaudiani MD, CEDS, FAED. "Dr. Gaudiani aims to improve medical diagnosis and treatment, motivate recovery, and validate the lived experiences of individuals of all body shapes and sizes, while firmly rejecting dieting culture."
I recommend two groups who will support you on your journey - F.E.A.S.T and the National Alliance for Eating Disorders. Both maintain websites and Facebook private groups.
Friday, May 4, 2018
Thursday, March 30, 2017
Severe and Enduring Eating Disorder (SEED) News, Developments and Commments
Updated 3 29 2018
As readers here know, a member of my family has been struggling with anorexia nervosa/bulimia nervosa combined with severe depression and anxiety since her teens.
A year ago she spent five weeks in a local medical hospital while her providers earnestly attempted to find a bed for her in a Level 1 (as it is called here in Arizona) psychiatric hospital as well as to a well-known eating disorder facility to no avail given the complex nature and longevity of her diagnosis.
During her stay, as a layperson although I have worked hard to be well informed (citizen advocate) on the subject, I met with push back and a certain level of patronization when I would inquire about lab results, her weight, and behaviors as well as offer suggestions. As a result, I often sought, as her Court appointed legal guardian, to obtain the ongoing medical records in order to learn clinically what was going on. Much of what I asked about I know is important information for those who practice in the field.
So, I was quite delighted to learn that the Journal of Eating Disorders has just provided Open Access to an article just published this year titled "Outcomes of an inpatient medical nutritional rehabilitation protocol in children and adolescents [up to age 23] with eating disorders". Peebles et al. Journal of Eating Disorders (2017) 5:7 You can access the full article here:
In 2015, the Journal of Eating Disorders provided an important commentary on SE-AN titled "Severe and Enduring Anorexia Nervosa: in search of a new paradigm", an editorial comment written by Stephen Touyz and Phillipa Hay found here : [Touyz and Hay (2015) 3:26] My take-away from the article was that providers need to focus on a 'recovery model,' the goal of which is to "....draw upon the patient's strengths and competencies rather than merely paying attention to what is 'wrong' with them." The authors propose that "....Most patients with SE-AN are unlikely to fully recover. Some do but they are in the minority. It is therefore extremely important not to focus solely upon symptom reduction, but also to take into account a more holistic model of care....to take cognisance of the person as a whole by improving not only quality of life, but overall general functioning, employment and access to suitable housing as well." I was hopeful, as I read their commentary, that additional research would be done and articles published to assist providers. And so, apparently this is happening as the reader can find in the Peebles et al article above as well as the following that I've quickly put together here.
One may be of interest to therapists - Predictors of Therapeutic alliance in two treatments for adults with severe and enduring anorexia nervosa found here. [Stiles-Shields et al. Journal of Eating Disorders (2016) 4:13]
Another is titled "Listening in the Dark:why we need stories of people living with severe and enduring anorexia nervosa" and can be found here. [Conti et al. Journal of Eating Disorders 92016) 4:33]
I believe, as a family member, it's very important to hold on to hope. I also am observing that a person with a severe and enduring eating disorder displays a tremendous amount of courage to keep going rather than to throw in the towel. I think we as a society have a responsibility to stand by that person.
As readers here know, a member of my family has been struggling with anorexia nervosa/bulimia nervosa combined with severe depression and anxiety since her teens.
A year ago she spent five weeks in a local medical hospital while her providers earnestly attempted to find a bed for her in a Level 1 (as it is called here in Arizona) psychiatric hospital as well as to a well-known eating disorder facility to no avail given the complex nature and longevity of her diagnosis.
During her stay, as a layperson although I have worked hard to be well informed (citizen advocate) on the subject, I met with push back and a certain level of patronization when I would inquire about lab results, her weight, and behaviors as well as offer suggestions. As a result, I often sought, as her Court appointed legal guardian, to obtain the ongoing medical records in order to learn clinically what was going on. Much of what I asked about I know is important information for those who practice in the field.
So, I was quite delighted to learn that the Journal of Eating Disorders has just provided Open Access to an article just published this year titled "Outcomes of an inpatient medical nutritional rehabilitation protocol in children and adolescents [up to age 23] with eating disorders". Peebles et al. Journal of Eating Disorders (2017) 5:7 You can access the full article here:
In 2015, the Journal of Eating Disorders provided an important commentary on SE-AN titled "Severe and Enduring Anorexia Nervosa: in search of a new paradigm", an editorial comment written by Stephen Touyz and Phillipa Hay found here : [Touyz and Hay (2015) 3:26] My take-away from the article was that providers need to focus on a 'recovery model,' the goal of which is to "....draw upon the patient's strengths and competencies rather than merely paying attention to what is 'wrong' with them." The authors propose that "....Most patients with SE-AN are unlikely to fully recover. Some do but they are in the minority. It is therefore extremely important not to focus solely upon symptom reduction, but also to take into account a more holistic model of care....to take cognisance of the person as a whole by improving not only quality of life, but overall general functioning, employment and access to suitable housing as well." I was hopeful, as I read their commentary, that additional research would be done and articles published to assist providers. And so, apparently this is happening as the reader can find in the Peebles et al article above as well as the following that I've quickly put together here.
One may be of interest to therapists - Predictors of Therapeutic alliance in two treatments for adults with severe and enduring anorexia nervosa found here. [Stiles-Shields et al. Journal of Eating Disorders (2016) 4:13]
Another is titled "Listening in the Dark:why we need stories of people living with severe and enduring anorexia nervosa" and can be found here. [Conti et al. Journal of Eating Disorders 92016) 4:33]
I believe, as a family member, it's very important to hold on to hope. I also am observing that a person with a severe and enduring eating disorder displays a tremendous amount of courage to keep going rather than to throw in the towel. I think we as a society have a responsibility to stand by that person.
Friday, February 24, 2017
2016 - The Year that Congress Passed and President Obama Signed Eating Disorders Legislation
On December 13, 2016, President Barack Obama signed H.R. 34, the 21st Century Cures Act, into Law. This historic bipartisan legislation included included key provisions from the Anna Westin Act (S. 1865/H.R. 2515) including clarification of existing mental health parity law to improve health insurance coverage for eating disorders and life-saving residential treatment, early identification of eating disorders training for health professionals, and enhanced information and resources to help early identification of eating disorders by the public.
This legislation passed the House of Representatives with a 392-26 vote and then passed the Senate by 94-5. I believe all Arizona's senators and representatives voted in favor. Amazingly wonderful!
A one-page summary of the Anna Westin Act can be found here accompanied by a personal account of my trip to Washington, DC to lobby for this legislation, also here. Amazingly, the Anna Westin Act received the bipartisan support of 101 Senators and Congressmen (36 Republicans and 65 Democrats) including, from Arizona, Rep. Kyrsten Sinema and Rep. Ann Kirkpatrick who signed on as co-sponsors of the bill.
A very special thank you to them and to Senator Amy Klobuchar [D-MN] and Congressman Ted Deutch (D-FL] who introduced the legislation in 2015 along with their colleagues Senator Kelly Ayotte [R-NH], Congresswoman Ileana Ros-Lehtinen (R-FL], Senator Tammy Baldwin [D-WI] and Senator Shelley Moore Capito [R-WV].
[Blog note: I spent most of 2016 advocating for my family member while she spent more than 180 days in hospitals and ER's as we attempted to keep her alive through legal means as well as imploring her mental health care provider and an insurance company to help her. This periodic hospitalization continues. We are grateful for the care including the important involvement of a special team and the coverage for that care that she has received, for without it, I truly do not think she would be alive today.
As you will learn here, our State Legislature has done nothing to provide Medicaid Coverage specifically for eating disorders because the one piece of legislation that could have started Arizona on the road to providing coverage died in a subcommittee.
I am so very thankful that the 21st Century Cures and Mental Health Reform Act incorporating the Anna Westin Act became law and to the many people who made it happen, starting with Kitty Westin whose telephone number was given to me years ago by a nurse here in an ER. Kitty, the mother of Anna Westin who died more than 16 years ago and after whom the eating disorder legislation is named, picked up the phone at her home and talked with me perhaps for a half hour giving me encouragement to keep going in spite of enormous odds.
Perhaps something now can happen in Arizona so people with an eating disorder diagnosis will get the life-saving treatment they need and early so they will not go through what my family member and we have endured for so many years.
Again, those with what is known as Severe and Enduring Eating Disorders (SE-AN) deserve a chance and opportunity to get into recovery. I recommend reading this piece found in the "Of Note" section by Stephen Touyz and Philipa Hay, published in the Journal of Eating Disorders (2015) 3:26.]
This legislation passed the House of Representatives with a 392-26 vote and then passed the Senate by 94-5. I believe all Arizona's senators and representatives voted in favor. Amazingly wonderful!
A one-page summary of the Anna Westin Act can be found here accompanied by a personal account of my trip to Washington, DC to lobby for this legislation, also here. Amazingly, the Anna Westin Act received the bipartisan support of 101 Senators and Congressmen (36 Republicans and 65 Democrats) including, from Arizona, Rep. Kyrsten Sinema and Rep. Ann Kirkpatrick who signed on as co-sponsors of the bill.
A very special thank you to them and to Senator Amy Klobuchar [D-MN] and Congressman Ted Deutch (D-FL] who introduced the legislation in 2015 along with their colleagues Senator Kelly Ayotte [R-NH], Congresswoman Ileana Ros-Lehtinen (R-FL], Senator Tammy Baldwin [D-WI] and Senator Shelley Moore Capito [R-WV].
[Blog note: I spent most of 2016 advocating for my family member while she spent more than 180 days in hospitals and ER's as we attempted to keep her alive through legal means as well as imploring her mental health care provider and an insurance company to help her. This periodic hospitalization continues. We are grateful for the care including the important involvement of a special team and the coverage for that care that she has received, for without it, I truly do not think she would be alive today.
As you will learn here, our State Legislature has done nothing to provide Medicaid Coverage specifically for eating disorders because the one piece of legislation that could have started Arizona on the road to providing coverage died in a subcommittee.
I am so very thankful that the 21st Century Cures and Mental Health Reform Act incorporating the Anna Westin Act became law and to the many people who made it happen, starting with Kitty Westin whose telephone number was given to me years ago by a nurse here in an ER. Kitty, the mother of Anna Westin who died more than 16 years ago and after whom the eating disorder legislation is named, picked up the phone at her home and talked with me perhaps for a half hour giving me encouragement to keep going in spite of enormous odds.
Perhaps something now can happen in Arizona so people with an eating disorder diagnosis will get the life-saving treatment they need and early so they will not go through what my family member and we have endured for so many years.
Again, those with what is known as Severe and Enduring Eating Disorders (SE-AN) deserve a chance and opportunity to get into recovery. I recommend reading this piece found in the "Of Note" section by Stephen Touyz and Philipa Hay, published in the Journal of Eating Disorders (2015) 3:26.]
Tuesday, June 21, 2016
Policy Statement of Support by the American Medical Association (AMA) re Eating Disorders and Treatment - Parity
Bravo to the American Medical Association for this announcement! This adopted policy augments the work of President Obama's Task Force as well as of those working for adoption by Congress of the Mental Health Reform Act of 2016. More information about the Task Force and the MH Reform Act here in my blog.
June 15, 2016
AMA Urges Equal Health Care Access for Eating Disorders
For immediate release:
June 15, 2016
June 15, 2016
CHICAGO – The American Medical Association (AMA) adopted new policy today urging equal health care access and payment for eating disorders. Although current federal law mandates parity in benefit levels for eating disorders, many payers do not offer parity of services, effectively excluding eating disorders from mental health parity.
"Eating disorders have the highest mortality rate of any mental illness, but too often a patient's care is determined by their insurance company instead of their health needs," said former AMA Board Chair Barbara L. McAneny, M.D. "With only one in 10 patients with an eating disorder receiving treatment and with psychological intervention widely accepted as a critical component of care, ensuring mental health parity in benefits will save lives."
The policy builds on existing AMA policy related to eating disorders, mental health parity and body image. The AMA already encourages payment for physical and behavioral health care services on the same day and for Medicaid to pay for those services in school settings. Additionally, the AMA supports increased funding for research on diagnosis, prevention and treatment of eating disorders, including research on the effectiveness of school-based primary prevention programs for pre-adolescent children and their parents.
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