Tabitha Farrar talks to Dr Graham Redgrave about the research done at Johns Hopkins looking into higher weights and a faster rate of refeeding patients with Anorexia in an inpatient hospital setting. The conversation includes:
- Refeeding intakes, traditional expectations versus new developements
- Problems with low target weights
- Relapse prevention programs
- Lower rate of relaspe for patients who reach higher BMIs in treatment
- The case for higher caloric intakes once the risk of refeeding syndrome is past
- What refeeding syndrome is, and research around this
- How and when treatment fails patients.
- Why we need to challenge the current guidelines pertraining to refeeding intakes
Link to the orginal study: https://www.ncbi.nlm.nih.gov/pubmed/25625572
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I’d really like to listen, but there is music that is in the foreground of this podcast and I can’t hear you speaking. I’ll check back later!
Hello – try re-downloading now, should be okay
Great job Tabitha – educating about the importance of much higher caloric/lipid needs for those to recover as well as higher BMI’s of 22-23
This is why clinicians who fear feeding:
too much
too fast AND making someone’s weight range too low as well as not realizing that even a few pound loss puts you into negative energy deficit and all the EDO thoughts/feelings/behaviors return, become habitual and escalate over time.
I hope Dr Redgrave learned from your experience and knowledge what happened to YOU and to so many others since most of the treatment world set the caloric needs and weight range too low and don’t realize someone is in relapsing STATE changes with even 5 pounds loss. What we learned is 5 pound lower than the lowest end of accurate weight range – is a relapse because all the anorexic thinking and behavior comes back, is rigid and entrenched.
I like that Dr Redgrave realized that “We haven’t got it right yet for you” instead of calling it treatment resistance. I wish that there were research to address the need for clinicians to set higher weights and higher caloric needs. It is important for clinicians to realize it is “the treatment failed” rather than a failure of the one suffering with this neurologically based brain disorder and intense fear of eating and gaining weight. For him to understand that the patient feels like a failure when it is really the provider who failed the sufferer is honest.
How to think about your illness if you have been sick a long time? Perhaps Hopkins EDO physicians can send their clients to you Tabitha, so they are not white knuckling.
You give them HOPE to overcome their food fears – and you provide the support to do so.
Individuals do not fail treatment. Treatment fails. I think that this is vital terminology. We don’t tell a person whose tumor doesn’t stop growing that they have failed treatment. Other medical illnesses frame failure as being the fault of the treatment not the person. Shows the contempt for mental health patients when we blame the patient for not getting well.
Thank you for your comment. Things have to change.
Amazing and hugely pertinent at this time for me (a discussion with the dietician in a couple of hours regarding a “maintenance meal plan”. I will certainly be referring to this discussion and your experience as I doubt my “set-point” or true healthy weight is a bmi 19 (i.e my target weight). I hate having to do this process in an institution- yes it’s tough battling it alone but like you said, you didn’t have the fear of others judging you which is so often the case whilst surrounded by ED clinicians. I’m not even in hospital for my ED and will be here long after reaching a healthy weight due to other difficulties, so it’s my choice as to what I do next and whether or not I allow the AN to hide behind the dieticians advice of a target bmi 19…thank you so much for your alternative view. It really could be key as to why I have not been successful in EDU inpatient admissions before. Alot to digest (sorry for the pun)
So brave Emma! It is not right that a person with AN has to fight to be given a higher target weight or higher intake. But this is what we are up against at this time. You go!
I’m so glad you stood your ground, Tabitha. I groaned out loud when I heard him talk about the exchange-based maintenance diet he puts patients on when they reach their [undoubtedly too low] target weight. UGH!!! Why do these “experts” insist on putting those of us with brain-based anorexia on any kind of restrictive diet??? Believe me “exchanges” are just another euphemism for portion CONTROL. Oh, but it’s “flexible” –HAH! I hope he connected the dots with your 200ml milk example, but I’m afraid not.
This quote sums it up nicely:
“Being on exchanges was very confusing for me because I was supposed to be getting away from rules and rigidity around food while I was being taught to have rules and rigidity around food.”
Excerpt From: Rebekah Hennes R.D. “Real World Recovery.”
Oh, and the answer to “why?” Because, despite all the degrees they still don’t know any better and they need people like you, Tabita, who will speak up and educate on full recovery. THANK YOU.
This podcast really hit home for me….at some point while listening, the idea that it is absolutely RIDICULOUS to set any kind of upper limit on the amount of food someone in recovery from an energy deficit state should be eating finally ‘clicked’ for me. The notion of keeping one on a very strict meal plan while in treatment really screwed me up, and it only served to reinforce my (already distorted) ED rules. Thank you for bringing awareness to this issue and for having the courage to speak out against the current paradigm the eating disorder treatment community seems to blindly embrace…..
Please know how much you are appreciated!
Excellent interview! Thanks to Dr. Redgrave for his wise and compassionate comments. I agree when he said it would be nice to have a scan or blood test or something that could predict the truly healthy BMI threshold for a person. He said for some people that might be 22-23 or 19 for someone else, or presumably anywhere in between. But I know of a number of people who need to be at a BMI in the “overweight” category in order to be free of ED’s torture, including my own daughter. And I am sure some need to be 30+.
I watched my daughter struggle towards recovery for years as an adult, after manifesting restricting AN at age 11, and having treatment fail her as a child and teen. Starting at around age 18, she did what you did, Tabitha. She start eating lots of food, binge eating, then restricting, and cycling back and forth. She had a couple of AN relapses in between lots of weight gain, even doubling her weight from her lowest at one point. She tried for years to have a BMI below 25, resulting in much suffering and chaos. It took her 10 years, and LOTS of heavy duty eating, to really balance out in the 26 – 28 range, which is what is healthy for HER.
So even any more forward-thinking program with a goal of a BMI of 23 would have failed her spectacularly. And, of course, all of the programs she was in, which had lower expectations, did just that.
Good point Kris B about your D needing to be at a higher weight to be less tortured by her ED and functioning well. I think it is a rare person who can be below BMI of 22/23 to gain strong remission. So that was the minimum – not what all should aspire to as many need to be at higher weights for brain healing and free of ED thoughts/feelings/behaviors
I hardly heard the Dr have a chance to speak..it all sounds like the female wanted to tell her story, nevermind the conversation.
“the female?” I assume that you mean me Mel?
This was recently posted over at FEAST. Pehaps you can get this doctor on your podcast and teach him a thing ot two.
The title sounded promising as well as the opening remarks, but I felt it all went downhill from there (e.g., a bmi of 20 is too scary for adults with severe and enduring AN . . . Providers need to let the patients design their own tx programs . . . If they want to gain only a kilogram or two from a bmi of 14, be happy with that).
When anorexia doen’t remit: a new paradigm giving hope for the future
Dr. Stephen Touyz
https://m.youtube.com/watch?v=gB4cyoNWDo8&feature=youtu.be
P.S. Looks like this comment goes along with your new Slack discussion blog post on effective/ineffective treatments as it looks like one of the Slack members is experiencing this frustrating “management” modality aimed at “severe and enduring” AN sufferers. Choosing the treatment, choosing the bmi with which one is comfortable — WHY is this considered cutting edge treatment for adults when the Dr. says he woukd never prescribe this for a 12 year old? What happened to do no harm??? I am so glad this member found you, Tabitha, and that she wants full recovery despite her shoddy treatment providers.
I couldn’t help but think no wonder the group of seven did so poorly — the target weight was set too low at 20 for full brain recovery. Instead the conclusion was that 20 was too high and scary so we shouldn’t be expecting adults to achieve that “ideal.” Let them settle at well below 18 and teach them to function there UGH!!!
How about showing us the results of 7 who are supported above and beyond bmi 20 to the person’s natural overshoot weight AND supported for at least a year more . . . then let’s see those recovery statistics.
Wonderful podcast, it was just what I needed to hear at this point in my recovery journey. Energy deficit can be so addictive and consoling, energy surplus can feel yucky and shameful for me. Learning to sit in the discomfort and not jump back on my feet is the place of growth I am working toward and this discussion gave me greater hope! Thanks again to Tabitha and Dr. Redgrave