F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Zodietitian
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
Quote
Ellesmum
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)


Ellesmum
Quote
scaredmom
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
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
Kali
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

Food=Love
Quote
Torie

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

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
Ellesmum
mimi321 wrote:
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.
Ellesmum
Quote
tina72
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

Keep feeding. There is light at the end of the tunnel.
Quote
teecee
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.
Quote
Hibiscus
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.
Quote
kazi67
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


Quote
Ronson
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
Quote
krae
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.
Quote
krae
Except for this forum, which is a lifesaver, emotionally and sanity wise.
Quote
Zodietitian
Thankyou everyone for all your really useful comments and suggestions. Please keep them coming! Zoe
Quote
KLB
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.
Quote
tina72
"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
Keep feeding. There is light at the end of the tunnel.
Quote
Kali
KLB,

What a great post!

Kali
Food=Love
Quote
scaredmom

KLB, 

This is so eloquent and so true!

XXX

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
AUSSIEedfamily
FOOD IS MEDICINE. Psychology/Psychiatry/Therapy on a starved & malnourished brain is pointless.

Read up and understand in great detail Anosognosia
ED Dad
Quote
Torie
toothfairy wrote:
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.


Good point, and I would take this one step further:  The person doing the day-to-day work of feeding is getting battered in the process and is constantly in the position of being the bad guy.  It is a big help (and kindness) if this bad guy role can be shared with the professionals so that the parent has someone to "blame."

Thanks.

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
scaredmom
bump for rixi
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
deenl
Just reposting one of toothfairy's links.

https://tabithafarrar.com/2017/06/anorexia-recovery-problem-intuitive-eating/?platform=hootsuite



I resent the assumption that there is one 'best' way to eat. In our family 2 people love to eat and can tend towards overeating due to a disorder, 3 do not get strong hunger cues ever (only 1 of them has an ED) so for all of us regular meals in regular amounts (but with increased calorie count for person in recovery) is best. Intuitive eating is not a healthy goal for any of us. Delicious, pleasureable, social, and yes functional meals are our how we stay well.

Warm wishes,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
Quote
kazi67
YES deenl
Can you be my d physc/dietician??? Please

It’s not rocket science is it? Why do they beat around the bush with all this intuitional eating BS?
Seriously I think all dieticians need to visit an ED IP clinic to see how difficult it is for the patients to eat and then once they do start eating it is still not easy it’s a constant battle everyday
I just don’t get why you would even suggest to eat intuitively too early
What exactly is the rush
Intuitively for my d is not much (duh) might be why she has anorexia
Or now my d is confused and thinks she’s bingeing [frown]
Which she is not but in her mind she thinks she is

Seriously as I said above please can all dieticians actually go and sit with a patient and watch the anxiety /crying and self harming or anxiety induced vomiting and reconsider if you would suggest to eat intuitively until WELL into recovery!!!!!

Alternatively speak with the parents of patients and actually LISTEN to the hell we have been through before you stuff up all our hard work

Sorry
Rant over


Quote

        

WTadmin