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

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sandytoes
Looking for any thoughts or advice on our situation. Like a few of the threads lately, we are not one of the lucky families where weight restoration fixed everything. All it did was change the number on the scale..

Almost three years since diagnosis, D is a healthy weight and a BMI that no treatment center would consider her a candidate for treatment. She wouldn't meet the criteria for an eating disorder even, I'm guessing. Although she still has extremely disordered thoughts and rules about eating. Only eats certain foods, a lot of checking with us to see if amounts are okay. So, disordered eating, not eating disorder. 

We are without meaningful professional help right now. We monitor food and do weigh-ins. D eats plenty of what she is comfortable with. We are struggling with what the next step is. Or if there is a next step? (One clinician told us we were lucky and to appreciate that we re-fed our child and go live life.) We followed the Kartini idea of weight-restoration without 'treat foods'. We model 'normal' eating in our house. The rest of us eat chips, ice cream, etc. D claims she will be fine if she never has cake for the rest of her life. I wrestle with this because I think food is attached to positive memories (birthday parties, holidays) and obviously I don't want that for her, but the reality is that the diet she eats (any meats, fruit, veg, rice, brown bread, milk, etc.) is the diet that most doctors would recommend for everyone and anyone for best health. We are inundated with this information everywhere we turn. I would never force her to drink a Coke now, so why force a milkshake? (I do understand during re-feeding that calories in is all that matters - I am not talking about re-feeding, I'm talking about right now.)

Some of you suggested to us three years ago, that that first plate of spaghetti was going to be just as hard as a piece of chocolate cake, so just do it. We couldn't, it didn't feel right to us, and thankfully Kartini's model supported what we were comfortable with. It seems impossible/wrong now, at this stage to go back to the days of food tantrums and force chocolate cake. She's not illogical, or ill from malnutrition like in early re-feeding. She can explain her choices intelligently.

Does anyone have experience with anorexia morphing to orthorexia? Do you think talking with a qualified nutritionist would be beneficial, to explain that the brain needs fat, etc? Do you think we are candidates for UCSF 5-day? (I've read it's helpful for kids who are stuck, but I can imagine the potential damage if we happen to be with a group of early re-feeders who fear all foods.) Do we wait for it to click eventually? 

I've read about Temperament-based Treatment of eating disorders and it's fascinating. Just because I need variety in my diet (and life!) doesn't mean she does. If she is fine to eat the same four breakfasts and the same three lunches for the rest of her life, as long as the calories are going in, does it matter? 

This was a ramble. If you need clarification on anything to better chime in, please let me know. With thanks. 
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sk8r31
Just to refresh my memory...is your d a teen or YA?  I think it would certainly be worthwhile to contact UCSD to chat with a therapist or intake specialist to see if the 5-Day Multi-Family program would be a good fit for your d and your family.  Have heard good feedback on Temperament-Based Treatment model; sounds worthwhile to explore that option too.

Personally, I think that continuing life with disordered eating, as opposed to an ED, is still challenging and has the potential to morph back to an ED.  If possible, you want to help your d to live up to her full potential, enjoying life to the fullest and as free from ED-related thoughts as she is able to manage.

Sending warm support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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blondie
I read a fascinating book on this recently as this is definitely something my sister struggles with - it's called "Orthorexia: When Healthy Eating Goes Bad" by a ED specialist dietician called Renee McGregor. It not only explains the condition but also gives good advice for starting to tackle it - it might be worth you and, even better, your daughter reading it?
What I found with my sister though was that it was only when she was ready to tackle some of her "food rules" (eg got fed up with missing out on things she really loved - even if she wouldn't admit it) that she made progress - and it's slow progress but gradually she is tackling them with the support of her treatment team
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Foodsupport_AUS
It sounds like she has moved to a functional form of anorexia. She eats foods in a limited range, she maintains a healthy weight but I suspect if you required her to gain some more weight ( and she may still be underweight for her) then you would get very significant push back. Getting treatment at this stage is I think incredibly difficult, she doesn't look ill, and her behaviours allow her to function and appear "normal". She of course has anosognosia. She can't see she is ill and can explain everything you are concerned about. I suspect though she would have a lot of trouble for example travelling to some countries. She would struggle to eat, that says her eating is truly disordered because normal people can and do adapt to whatever is available. Normal people do celebrate with others, and that in all societies includes food. No dietitian tells people to ONLY eat from a limited list of foods. 

I agree that looking at those treatment options mentioned above may be worthwhile. I know of someone whose D  very much like your daughter was stuck but functional, and they have seen great results with the TBT program.  
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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scaredmom
Hi there,
From what you wrote l am concerned about her thought process. And agree with Foodsupport and sk8r31 that she should get some professional help.
The points brought up that she has such a limited diet as a young person is a bit worrying. And yes food is associated with good times and it would be nice for her to eat and enjoy it. 
I also agree with Foodsupport above about her current weight may be too low for her as well.
I wonder if ED is still in charge here and that more intervention and professional help is required.
I feel that to be truly recovered one could eat anything anywhere anytime without worrying.
all the best
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)
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Mamaroo
We also followed Kartini Clinic's recommendation of no treats or take aways during refeeding, but like you, have realised that for full recovery she needed to eat all those things. We used a ladder approach where we built on things she already ate. For example, she ate yogurt without a problem. The next step was to freeze the yogurt, which she was also able to eat without a problem. Then I bought frozen yogurt which looked like an ice cream, and finally bought an ice cream. It took several months until she was able to eat an ice cream without complaining, but now she loves it.

For food such as pizza and burgers, I would make it myself from scratch at home and then when she was comfortable eating it, I bribed her to have it at a fast food restaurant. 

For things like chocolate, sweets and chips, we would buy a chocolate block and divide it between all family members and tell her just to taste it. Rinse and repeat and after several weeks she was able to eat it.

We stressed that we wanted her to be able to eat normally and have a social life, which means being able to eat what everyone else is having. 
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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debra18
Is she involved in any type of activities and hobbies? I found that piano lessons is helping my daughter move on. Also is your daughter able to understand that she doesn't need to eat something like pizza on a regular basis but she needs to be able to if that's what her friends are having. Can you try having that type of discussion with her?  My daughter always preferred healthier foods but could go to a party and ate what is there. She is at that point again and she is grateful that she can do that.
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debra18
Your daughter was treated at the Kartini clinic or you followed their method? What did they advise to do after the time period passed? Also when you say only the number on the scale changed does she have other behaviors left, sh, anxiety, or the only issue is that she is limited in the foods she eats?
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gesaweyh
This sounds very familiar to us. My daughter, soon turning 18, started with orthorexia about 6 years ago. After a while she lost a bit of weight which I luckily immediately recognized and was able to stop. My daughter got an appointment with a psychologist but this person did not really see a problem with orthorexia, and due to too many "hard" cases, the treatment was soon stopped. We were fighting for 4 years, keeping the weight but the thoughts had always been there. Then the weight crashed a year ago. Within a very short time anorexia had fully developed. She was admitted to hospital where she had to stay for 3 1/2 months. When the weight was almost restored she could leave the hospital. Then the real hard time followed with several suicide attempts but she kept eating, always staying just a little bit below her target weight. How that worked? By giving her "healthy food". And there we are again. Since December she eats about 3500 kcal of "her" food but whenever I try to change just one single very small thing she refuses. It is a severe orthorexia with a tremendous dependency because it is only me who can give her five meals per day which she is ready to eat. Everything else does not work. And the monster is extremely strong. When I try to hand over to another person, another suicide attempt is coming up. Having this extreme dependency since December is unbelievable. Yes, I should be happy that her life works when it is according to these extremely strict rules, her weight is healthy, she is doing sports and successfully continued with some courses in school BUT such a dependency is definitely not sustainable. And here the problem comes - it is hard to tell anyone how she suffers with all her thoughts and her orthorexia. In the hospital they only look for weight parameters, and when she is there she is such a nice and cooperative person. Noone sees how she suffers. Luckily, she receives still psychological help, and after a year now we found a person who seems to work for her. It is a person who understands that thoughts can make you extremely ill. Having experienced all the suffering from "only thoughts" I have a hard time to see that someone going from anorexia to orthorexia will work out without professional help. And the professional help needs to understand that orthorexia can be a severe illness, in the worst case leading to suicide if the patient gets the feeling that he/she is not understood. I really wish that you can find a person who can help. It is an extremely long-lasting fight.
GW
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sandytoes
Hi all, thanks for your replies. To answer some questions:

sk8r31 - D isn't yet 16. Blondie - I've ordered the book, thank you for the suggestion. Debra18 - we did not go to Kartini, we just aligned with their beliefs, and saw a way to re-feed that made sense to us. And honestly, I thought that once her brain was no longer starving and she was no longer ill, the eating cookies would return naturally. At 30 pounds less, she pulled at fat that wasn't there. As many have said here, the child actually feels less fat the more weight they put on because the brain is healing and they aren't seeing things incorrectly. I naively assumed that other irrational behaviours would go away with weight-restoration too, like a fear of cookies. So that may answer your question about other issues, debra18, not just the scale number changing. She's a complex case with serious pre-existing anxiety and depression. This has complicated dealing with this illness because we don't have the leverage of friend time or phone time, she does neither and cares about neither. When your child doesn't want to live and a book gives them a twinge of joy, you are hardly going to use that book as a bargaining chip to make them eat a cookie. She has numerous solitary, creative interests, but on days when the depression is terrible, she can't bring herself to do anything.

gesaweyh - I feel your pain. If someone saw my grocery bill they would die. It is expensive to be orthorexic. My D has a similar unhealthy dependence on us and we are endlessly searching for a professional to help us navigate. Friends and family who don't live in our four walls have zero understanding about what day to day life is like here. With the food limits she has, we are unable to visit people, let alone travel anywhere.

I have contacted UCSD, they don't seem to have any dates until perhaps the Fall. I am waiting to hear back from UCSF. We need a kickstart with the food piece, but ultimately we need someone to triage her issues to address the most pressing first. Many in-patient places for depression won't accept a child with an eating disorder, as they aren't equipped to monitor food intake. Finding a skilled, experienced clinician who understands depression, anxiety and doesn't have 1990s beliefs about eating disorders is extremely challenging. I know I'm preaching to the choir!
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sk8r31
Hoping that there may be spots available at UCSF for summer.  It does sound very challenging at present, and there truly aren't enough evidence-based, up-to-date clinicians available to treat EDs.  Treating the co-morbids of depression or anxiety adds another layer...

UCSD does also have residential and IOP options, as well as the 5-Day Multi-Family program.  Wondering if that higher level of care may be something to consider?

Sending warm support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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mommiful
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Does anyone have experience with anorexia morphing to orthorexia?  


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Do we wait for it to click eventually? 


There was a paper on this: The prevalence of orthorexia nervosa among eating disorder patients after treatment, which concluded: 

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Orthorexia nervosa symptoms are highly prevalent among patients with AN and BN, and tend to increase after treatment. ON seems associated both with the clinical improvement of AN and BN and the migration towards less severe forms of EDs. It is necessary to clarify if ON residual symptomatology can be responsible for a greater number of relapses and recurrences of EDs.


It seems that it's hard to tell whether orthorexia is a stage in gradual recovery from anorexia, or a risk factor for relapse, or both.

Tabitha Farrar's Love Fat describes her experience with orthorexic eating as she moved from anorexia to full recovery. It might be a helpful read. The parts about orthorexia come in the later part of the book.

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Do you think talking with a qualified nutritionist would be beneficial, to explain that the brain needs fat, etc?


In my experience with nutritionists, you're more likely to get reinforcement of the orthorexic message than accurate information about the value of fat. Tabitha's book has a bunch of material on the benefits of fat, too, by the way.

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I've read about Temperament-based Treatment of eating disorders and it's fascinating. Just because I need variety in my diet (and life!) doesn't mean she does. If she is fine to eat the same four breakfasts and the same three lunches for the rest of her life, as long as the calories are going in, does it matter?
 

I looked into Temperament-based Treatment of EDs too. I liked many aspects of the program, but I didn't like the idea of accepting that my daughter might live such a narrowed life for the rest of her life. I want more for her. I want her to be able to to travel to foreign countries; to eat things without knowing, or giving a second thought to, what's in them; to go to potlucks without bringing her own food; to go out for drinks after work or out on a date or to a business lunch without worrying what people will think of her food choices; to enjoy foods, including treats and special foods, as some of the pleasures of life; and to share in family traditions around food. I want her to be healthy enough to have children, and also to be free enough to bring her children up in a household where food can be a simple, daily practicality, while also being something to enjoy, to celebrate with, to be thankful for. I can see that the approach of having just a few meal plans may make it possible for people who have suffered for years and been unable to fully recover to live a relatively full life. It may be a stepping stone for some and a long-term solution for others. It's certainly better to live in this constrained way, than to remain unable to function and medically at risk. But I still believe that full recovery is possible for my daughter, so I didn't feel comfortable with the idea of settling. That's just my take on where my daughter is at, though. You know your child best.

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tina72
Tabitha Farrar also does coaching. Normally with adults but maybe worth a try?

I also think that recovery from AN is not only WR and get back to a healthy weight but also working down all fear food and all anorexic behaviour and thinking. If we would not do that I think we would also be in that state that only the number on the scale changed. So if your d is really on a healthy weight (that must be checked first - many professionals think they are healthy when they are just not underweight) it is really important to work on those other issues to get rid of all ED behaviour.

These issues do not fade away themselves after WR. They need to be worked on and tackled like fear food. Normal eating includes sweets and cake and burgers now and then. It is a question of amounts; no food is "unhealthy".
I see it the same, a dietitian will probably only tell her that it is great that she wants to eat "healhy".
A young girl that says she does not want to eat any cake in her life any more - how sad is that?
Keep feeding. There is light at the end of the tunnel.
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