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Zodietitian

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Reply with quote  #1 
Hi,

I’m Zoe, a dietitian and lecturer in the U.K.

I’m not an ED specialist but I’ve found this forum a great source of help over the last few years in supporting a family member with anorexia nervosa so 🙏 thanks.

With colleagues we are currently reviewing the teaching our student Dietitians get on eating disorders. They have about 10 hours. It is really the basics for qualifying as a general dietitian as to work in an eating disorders team you would expect a dietitian to have lots more specialised training. We focus on general inpatient nutritional treatment really ie tube feeding etc plus a bit about what ED is, causes, treatments, etc.

What I wanted to include though was some do’s and don’t’s when working with children and adults with eating disorders - what not to say, what to say etc.

I’d love some of you to let me know what you would like our student dietitians to know.

If it’s ok I will share some of your responses verbatim (anonymised) as I think hearing from the ‘horses’ mouths’ is most powerful!

So please let me know:

- What would you like dietitians to understand about being someone with or a family member of someone with an eating disorder?
- what have dietitians done or said that was useful (or what do you wish they had done or said)
- what have dietitians done or said that have been not so useful or even harmful - what could they have done differently?

Thanks in advance.

Zoe
Ellesmum

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Reply with quote  #2 
Hi Zoe,

For me it would be that the the person with an ED is pretty much incapable of making decisions. We had a first meeting with a dietitian last week and she placed too much emphasis in what my child is comfortable with. Well the fact is my daughter is not comfortable with eating anything at all so it was not helpful for her to be told half fat milk is OK. I'm trying to get as many calories and nutrients into her as possible. These kids often will simply not listen to parents but are much more likely to listen to someone they see as an expert.

Their minds are not fully functioning so bombarding the person with facts and figures is pretty much 'in one ear and out of the other' although I do notice my daughter responds much better to 'you need calcium for this and vitamin B for that' rather than 'you need X calories' they are obsessed with calories and it overwhelms them.

It would be helpful I guess to watch some videos and listen to some talks to try and get inside the mind of a person with ED, knowledge is power and empathy is important to understand what your'e dealing with. Firm but kind all the way!

I would have found it helpful to be able to speak in private for a moment to explain a little of my daughters character and also to make clear that I need back-up. Us parents become experts too very quickly and wrong advice or approach can quickly unravel our hard work (and it really is hard work)



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scaredmom

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Wow thank you for asking. I went to my dietitian after d gained all her weight back and more and tried to teach her what she should have done. Here in my Canadian city I think she had to tell us the Canada food guide and did not tell me how to bump up calories. I only found that here. I went to the grocery stores and many different ones and found where they had the more caloric muffins . Then the other store had the better calorie bagels and which tortilla brand was more calories etc...
This deititan should have done that homework for all the ED families before ours. I did it for them. I found out here about which ice creams to use and again my team should have taught me that. This would have saved me a lot of anxiety and truly , terror that I was doing it all incorrectly Also when discussing diet she showed us plastic food sizes with d in the room. So then at home d who was 11 at the time tried to measure. I think that was wrong,wrong,wrong. I was trying to get a lot into her I did not need d to measure. I was so angry and went and spoke to the team and gave a lust of where to buy what foods that were common to all households and were more caloric. Then the dietitian said she did not know she had to be explicit!!!
I think asking the parents what the typical meals are first then teaching how to add calories to that prior to increasing volume would have been helpful at the beginning. Then when d’s mind got better and she had gained a bit then I was able to increase volume of food.
I am typing on my phone sorry if there are typos.

Thanks for doing this. I think it is important
Kali

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Reply with quote  #4 
Dear Zoedietician,

I'll be happy to answer these questions in the hopes that it help someone.

Quote:
They have about 10 hours. 


First, I believe that 10 hours of training is just not enough. This is a complicated illness and this is too little training. I think that if dietitians are interested in working with ED patients then there should be additional training. They can also be reading on their own. 
Here are some of the books which can be helpful:

Help Your Teenager Beat an Eating Disorder by James Locke and Daniel LaGrange

Anorexia and other Eating Disorders: How to help your child eat well and be well by Eva Musby

When your teen has an eating disorder by Lauren Mulheim.

Decoding Anorexia by Carrie Arnold


- What would you like dietitians to understand about being someone with or a family member of someone with an eating disorder?

Eating Disorders are brain based, serious illnesses with the highest mortality rate of any mental illness. Families are uniquely positioned to be able to help their children become well again by refeeding and their efforts should be supported by the dietitian. Having a child diagnosed with an eating disorder is a shocking and difficult experience for a parent and parents need support from all treatment providers and this will benefit their children.


- what have dietitians done or said that was useful (or what do you wish they had done or said)

We found our dietitian helpful as an additional voice in the chorus surrounding my d. which was encouraging eating. IMO A dietitian should never recommend anything less than full fat dairy products. Blind weighing may sometimes relieve stress on the patient. Although our daughter saw her weight throughout her initial weight restoration phase and currently does now, there was also a point where we were restoring some weight at home and it was more helpful for her to not know what she weighed. I believe that the decision to blind or open weigh should be taken into consideration depending on the patient. The dietitian should review the patients's historical growth chart if there is one, and use that to help determine a target weight to shoot for. Target weights should not be set too low and a low target weight range should NEVER be communicated to a patient. A BMI of 18-19 is not optimal for the majority of adults for example and is not an indicator of recovery. Most of our children needed to be brought up to a bmi of at least 20.5 or even much higher to experience remission. The dietitian was also helpful with portion sizes and went over how much needed to be eaten with each meal. She had plastic food in her office and would load a plate with appropriate portions to demonstrate. We did not follow a strict meal plan and we did not measure any food. We took the nutritional guidelines presented by the dietitian and incorporated them into our feeding at home. The dietitian should encourage the patient to let their family take over their meal preparation. They should encourage 3 meals and 2 or 3 snacks a day. The only job of the patient is to eat until weight restoration and they should not be preparing their own food and should stay out of the kitchen. Sometimes we have had to feed our children high calorie menus, from 3700 to 6000 calories a day and a nutritionist should not support a caloric level for meals which does not result in a weight gain of at least 2 pounds a week steadily. There should also be a period of weight maintenance after weight restoration where the family continues to be in charge of feeding. Do not encourage the patient to take control of their food or to eat independently until the patient has been weight restored for some time. Then for example, start by encouraging them take responsibility for taking their own snack for example or taking a couple of lunches on their own with friends or at school. If they then lose weight, the family steps in again to make sure the weight stays on and takes back control of the eating. Encourage all patients over 18 to include their family in treatment and make sure all the proper paperwork is signed so that if your patient shows up very underweight or is losing weight rapidly or is clearly too ill to be able to listen to the dietitians advice, you can communicate with their caregivers and let them know what is going on and come up with a plan. Even though our daughter is an adult, I have permission to speak with her team so when I see that there seems to be weight loss or issues I can reach out to them with any concerns I might have. Also, know when to refer the patient for a higher level of care if the refeeding efforts are not working. It is not the families fault in that case but the illness may just be too strong to be able to be treated in an outpatient situation. 

- what have dietitians done or said that have been not so useful or even harmful - what could they have done differently? 

Our personal experience with dietitians has been positive for the most part and they have been valuable members of the team. Her goal weight was set by the treatment center she was in, I believe it to be correct, and we told the dietitians what it was and they agreed. So we never let them set a goal weight which was too low, which is a common problem in treatment. My d. is a young adult and for her it is appropriate to see a dietitian but for younger children it may not be. One dietitian we had did try to encourage my daughter to take more control of her eating too soon and it resulted in weight loss, at which time I stepped in and fed her more. 

Anyway, hope this is helpful to someone out there.

warmly,

Kali


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Torie

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Reply with quote  #5 

Thank you for asking!!!  Wow!

In my dream world, the dietitian would meet with me without my ED-kid.  S/he would ask, "How can I help you?"   I would say, "Please tell my kid that I know what she needs, and that she needs to eat whatever I serve her.  And please call her therapist and direct her to stop talking to my d about anything related to food/calories/weight/size/ shape etc." 

I think every one of us would have a different wish list for our dietitian so it would be great if we could be asked individually.

The best help I found was this forum, so it would be great to let people know we are here.

Thank you again for asking.  xx

-Torie


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mimi321

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Reply with quote  #6 
That most will need 3000-3500 calories to gain, and some even more. Whatever the regular formula dietitians use to calculate required energy does not apply to ED kids. Learn about hyper-metabolism. If a parent tells you something in confidence about what they are giving their child, do not tell said child. 
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Ellesmum

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Reply with quote  #7 
Quote:
Originally Posted by mimi321
That most will need 3000-3500 calories to gain, and some even more. Whatever the regular formula dietitians use to calculate required energy does not apply to ED kids. Learn about hyper-metabolism. If a parent tells you something in confidence about what they are giving their child, do not tell said child. 



A very good point from Mimi321, please understand it is not 'breaking trust' to lace soup with olive oil or add cream to yoghurt, it is done with love in the same way we used to hide medicine in our babies milk or toddlers food, for their own good.
We are charged with keeping our children alive and by doctoring food we do just that, exactly as if it were antibiotics in our toddlers juice.

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tina72

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Reply with quote  #8 
They need to read the books mentioned above and to understand that AN is a biochemical disease and that the metabolism of an AN patient is totally different to what they learned before.
They need to learn how to make people gain weight and not only to lose weight. Some patients need 6000 calories a day. They need to learn how to put so much calories in a very small amount of foot.
They need to learn how to make people gain weight that does not want to do that.
They should work with the parents. The patient does not need a dietitian in the early days. Later on in recovery it might be helpful.
They should not talk about weight, shape, calories or "healthy food" to patients. There is no unhealthy food for someone who is dying of starvation.

I am sure I will add something tomorrow that I forgot today.
Thanks a lot for asking. I wish some more dietitians would be interested in this disease.

Tina72


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teecee

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Reply with quote  #9 
In my ideal world I would love for the dietician to meet with me first to discuss our family eating habits so that I could ask questions about portion sizes and what balanced meals actually look like.
I thought we had a good varied diet until I met our dietician. She educated us very well - not assuming anything eg when she told us D needed a sandwich as part of lunch she specified how many slices of bread and how to butter the bread. Sounds simple doesn’t it but we had different ideas...through ignorance really.
She taught us about portion sizes...handfuls rather than scale measurements.
She got us to bring our crockery in so she could see plate sizes and advised us on how to portion sizes on the plate. She was great.
The only thing I struggled with understanding was why she accommodated tummy ache moans and fullness rather than explaining to my D that this was normal for ED and not to worry but keep feeding.
She told me about the effects of caffeinated drinks on absorption of nutrients.
She was a very gentle person with lots of compassion but was firm when needed and knowledgable. She explained things in terms of why full fats were needed (calcium to prevent osteoporosis and for brain recovery) to us as parents and our D. She explained the difference between complex carbs and carbs and gave us advice on chopping and changing brands and not sticking to one. When our D would explain she was waking up hungry in the night she would explain that complex carbs would fill her up longer to last the night. When D could see this working she trusted the dietician more.
She would conduct meetings with us mostly. On some occasions she would see D for 20 mins alone then invite us in to discuss the agreed meal plan (this was much later in the refeeding process not at the start) and if we had any issues she would take these on board.
The valuable thing for me was that I could ring her in between meetings to let her know if something wasn’t working and she would change small things but agree to discuss and implement big changes at meetings. I felt completely included. That was a big deal to us as a family.
Thank you for doing this.
Hibiscus

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Reply with quote  #10 
My thoughts would be:
Never to comment that people don’t seem very underweight, people do not have to be skeletons to have an ED.
Consult with carers rather than patients , or at least have a separate session with them.
Avoid discussion of calories, talk about food servings required , no need to specify the sizes with the patient.
Help carers learn how to add hidden calories to meals, cream, cheeses, oils, fats etc without discussion in front of patient. The faster weight is gained the shorter the torture.
Back the carers up, be guided by them.
Educate themselves about what an ED does to the person and their carers.
Many people are confronted by weight gain, be supportive of blind weighing if asked. This has been a game changer for my D.
Many many more things. Thanks for asking.
kazi67

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Reply with quote  #11 
Hi
My d would not drink water when she first became ill
I had to lift the glass to her lips, then we managed to get her drinking 3 glasses of full cream milk a day (no easy feat)
I took A LOT of time off work to help my d recover, (financially this illness has cost our family a bucketload) as loving parents we are fully invested in our child’s recovery (no matter the age)
I think dieticians should realise this and realise the fact at any age (my d18 at the time) they DO NOT think they are sick
They actually see themselves as being fat ( their brains are not functioning) body dysmorphia is experienced
by many
Al foods are good, get off the “healthy” buzz word my d became anorexic by starting to “be healthy” and not eat any junk foods at all

What wasn't helpful: when the dietician (non ED specialised) said to my d she didn’t have to drink all that milk whilst looking at me like I was some kind of idiot for “making” her drink all that milk
There was no suggestion of swapping with a yoghurt or other dairy product instead of the milk (I was speechless)

I used to get my d to drink smoothies when she woke or I woke her and she went back to sleep once it was all finished since that dieticians comments she no longer drinks smoothies and this was a very good way of getting nourishment into her
To undermine me, her mother like that was mind blowing, we stopped seeing her and I sent her a lengthy email explaining why, I was ANGRY for a very long time

Getting the weight on as quickly as possible is best
most of population struggle to loose weight HOWEVER anorexics struggle to gain weight (duh)
There is no point in trying to “side” with the patient
Anorexia is a serious life threatening illness
Patients see themselves as fat and do not think they are sick
They have a fear of food but food is the medicine so it must go in

Once my d was hospitalised the choices were taken from her in the beginning
She had NO control, ED was confronted
She was not allowed to negotiate at all
Once she was able to eat her meal plan she was given limited choices
Would you like scrambled egg or poached? No change of mind at last minute

This was a highly experienced ED dietician, she was not afraid of the ED

My d hated the dietician at the hospital ion the beginning now she know she completely understands ED and what she is talking about and highly respects her and can see now her first dietician should not have said to stop the milk

I would suggest if a dietician knows nothing about ED to refer onto someone who does and to try to understand the damage they can do by making the wrong comments to patients because off ED rigid/literal thinking, once something is said by a “professional” it’s considrred gospel by the patient and for the under 18 patients that it’s more likely best to only meet with the parent/carer

There really needs to be more understanding of this illness by dieticians
I think they spend so much time trying to get weight off patents and stopping high fat unhealthy food choices that the ED patients confuse them
3 balances meals and 3 balanced snacks everyday and this must include high calorie/fat foods
There are no unhealthy, high fat bad choices with ED


Ronson

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Reply with quote  #12 
I would like the dietician to speak to parents in private first and work with them. Tell child they need x, y and z in their diet if requested by parents. Also help debunk some of the healthy eating stuff they are learning at school - go into schools pls x
toothfairy

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Reply with quote  #13 
I think every clinician should read this book
https://www.amazon.com/When-Your-Teen-Eating-Disorder/dp/1684030439

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krae

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Reply with quote  #14 
I think that all young, hopeful, people who wish to help with eating disorders should at least read everything and all the links on this forum, to become well informed on how debilitating this illness is to the child involved and their family. It is a hateful illness that should never afflict any child and their family. But it does and there is little help out there for us in the midst of it.
krae

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Reply with quote  #15 
Except for this forum, which is a lifesaver, emotionally and sanity wise.
Zodietitian

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Reply with quote  #16 
Thankyou everyone for all your really useful comments and suggestions. Please keep them coming! Zoe
KLB

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Reply with quote  #17 
I have only just started this horrible journey with my son but in the short time I've been on this forum I have learned a LOT. I have read and read and read and read. And what I want a dietician to do is this.........

Understand causes are multimodal and there is a biological connection. I want you to tell me it isnt my fault, it isnt my husbands fault, it isnt even really my son's fault. It's a disease, with signs and symptoms, that can be, at a fundamental level, fixed with medicine. Food is that medicine.

A starved brain is not a rational, logical or emotionally controlled brain. You cannot talk to someone with a starved brain in the same way you can talk to someone else.

Empower the parents to take control of everything food related and empower them to be a part of the treatment team, but dont forget they need support too. To empower them to do those things you need to offer education and resources in the form of nutrition advice for rapid weight gain - give advice for boosting calories in meals,calorie dense meals/recipes, particular brands that are more calorific, information on why fat is needed for a starved brain/organs, why calcium is needed, why protein etc etc so I can use that information myself, so I can be an extension of you at home.

I want you to give me a booklet full of high calorie breakfast, lunch, dinner and snack ideas/recipes that is applicable and relevant to my son's case, with foods and ingredients I can easily buy in the local supermarket and won't have me spending hours and hours in the kitchen. I also want this booklet to contain ideas for substitutes if my son doesn't or cant eat a particular food.

I want you to tell me to get rid of all diet foods in the house, to keep my son out of the kitchen, to take away any choices regarding food from him because his starved brain cannot make those choices. I want you to tell him that his parents are in charge and theyre only going to feed him food that is safe to eat, to help his body recover.  I want you to not talk about targets or limits or numbers with him, only to me and my husband.

I want you to tell me and show me how to coach my child to eat what I put in front of him. I want you to tell me how to tackle the huge list of fear foods he has. I want concrete and proven techniques to try and I want to know when to start doing this.

I want you to make this as easy as you can for us.
tina72

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Reply with quote  #18 
"I want you to give me a booklet full of high calorie breakfast, lunch, dinner and snack ideas/recipes that is applicable and relevant to my son's case, with foods and ingredients I can easily buy in the local supermarket and won't have me spending hours and hours in the kitchen. I also want this booklet to contain ideas for substitutes if my son doesn't or cant eat a particular food."
YES! I would have wanted such a booklet, too! Great idea, KLB.
Tina72

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Kali

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Reply with quote  #19 
KLB,

What a great post!

Kali

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scaredmom

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Reply with quote  #20 

KLB, 

This is so eloquent and so true!

XXX

toothfairy

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Reply with quote  #21 
1/You can have a serious life-threatening Eating Disorder at any weight.
You can for example have anorexia at a bmi of 30, although the term used is A-Typical Anorexia.
2/ Recovery is a state not a weight. Expecting somebody to be in recovery at target weight of BMI 19 is like expecting everybody to be the same shoe size.
3/ Brain healing takes a long time. A very well respected ED expert in the use advises approx 4000 calories for 4 years.
4/By allowing the patient to take charge and refuse food groups and working around the patients fear without insisting on exposure by eating the specific food is colluding with the illness.
5/ Expect the patient not to like you. If Patient  does not like you, you are probably doing a good job "poking the beast" and standing up to the anorexia.
6/Use a lot of caution Allowing Sport and exercise , it can often be part of the illness, and keep the sufferer sick.
7/ Some patients become hypermetabolic and need 10,000 calories per day to re-feed.
8/Patients can "waterload" and hide weights in their clothes before weighing.
9/Child is not allowed to  go food shopping or cook or be in the kitchen while food is being prepared.
Here are some tips -

A.Parent/carer prepares meals - no negotiation

B. Toilet before meal and no toilet for at least an hour afterwards.No Flushing.
 
C.No Napkins or clothing with pockets where food can be hidden.

D. Use of leverage will often be required -Internet, tv - whatever they hold dear is to be removed if they refuse to eat, until they have eaten. If they're older and are not financially independent.
 
E.Separate the two - The sufferer is not the ED.

F. Carer needs to detach from the situation during meals and not get drawn into emotional discussions.Eating the food is not up for negotiation.

G. Remember that the child wants to recover - the ED is stopping them, and the illness is much bigger than the child.

H. The child needs your permission to eat. They need you to stand up to ED as they do not have the strength to do so themselves

I. 3 meals and 3 snacks per day (supervised) - do not deviate from this. Add time limits to the meals (as a guide/goal!). Ours (and the hospitals) was 30 mins for meals and 15 mins for snacks. In the early days this could extend A LOT. 

J. Do not tell the child how many calories they need and do not allow them count calories.

 
K. Don't back down.
 
L. Making decisions / choices is extremely difficult for them (painful to watch). This is true in areas outside of food too. If you've tried to hand over some control of a meal or snack and notice that they are struggling, that is an indication that it is too soon and that you need to be making those decisions for them.

M. Sometimes distraction helps during meal times. That can come in the form of games,TV, music. Whatever it is you control it and it only continues with eating.

N.if child is purging they will need a huge amount of supervision after meals. Purging is so dangerous.

Here are some tips on treating purging from a very highly regarded ED Clinician in the USA.

-. Often, they simply cannot be left alone, ever. For anything. So – parents need to enlist help from friends/family/church etc to take care of OTHER things in the house – like laundry, food, siblings, pickups/drop offs, etc, so that parents/caregivers can full-time focus on their child and keeping them safe. Family medical leave, etc, should be used to max. If not possible to leave work, then school or other family members have to substitute as supervisors when necessary. Kids need to be watched in bathroom, in all places of house. To make this workable, parents usually will have kid sit in a common area of home near them as they work and get stuff done. But no bathroom or alone time, ever, until purging wayyyyy better.

-. Parents usually have to employ same maneuvers at night, changing sleeping arrangements in house so that child is not sleeping near a bathroom, and a parent is sleeping near her on an air mattress or other bed, blocking the path from child’s sleeping place to door that could go to bathroom or somewhere else to purge.

-. If child is recently discharged, running/exercise would not be prescribed in any form yet. First form of activity would be school and no others would be added until purging under control and at a goal weight and in school with that going well, first form of activity would be PE or iceskating with friends or bowling or something social and mellow – NOT running.

-. Close followup is needed.

-. If you suspect purging, it likely happened. She/he will need to understand that if you suspect she/he purged, she/he needs to replace the food.

-. Nothing eaten counts unless a designated adult saw it get eaten – so her/him telling you that she ate a banana or anything doesn’t count – it only counts when it is witnessed; otherwise it will just be ‘extra’ and she still has to eat prescribed food in front of you.

-. These behaviors are dangerous and lethal. EVERY effort of you, your team, your extended support system, your school system, should be on containing them and treating them just as swiftly and stringently as you would if he/she was using drugs right in front of you, or running into traffic. She cannot stop on her own, and he/she cannot be reasoned with about them. The containment has to be all around him/her.

 
Regarding Lab work, often the labs can look ok but the patient can be critically ill, so lab's alone mean nothing.


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toothfairy

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Reply with quote  #22 
Here are a few short videos 







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toothfairy

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Reply with quote  #23 
Here is a link to the AED guidelines which I believe is important for all Clinicians treating ED.
http://www.nyeatingdisorders.org/pdf/AED%20Medical%20Management%20Guide%203rd%20Edition.pdf

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toothfairy

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Reply with quote  #24 
Lastly, here are a few meal coaching videos to help  the clinician understand what re-feeding may look like at home.






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toothfairy

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Reply with quote  #25 
I love this too
https://www.melaniejacob.com/blog

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