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.

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Pandamom
Hi, I'm new to this group. My daughter (age 15) was diagnosed with restrictive ED in Oct 2019. She started restricting in summer. Her weight dropped 30 lbs from June to Oct. She has been followed by an ED team with Drs, dietitian, psychologist in a reputable health system. I have been refeeding her at home. She completes her 3 meals and 2-3 snacks every day with some difficulty, with some crying spells after dinner. I read the "when your teenager has eating disorder" book at the beginning of her ED diagnosis. The book has been very helpful. I learned most of the things I am doing from the book. At the initial visit with the ED team, her blood pressure, pulse, labs were okay. She was blind weighed at the initial visit, then one week after,  then two weeks after and then a month after. The clinicians didn't disclosed her weight to us. So I don't know her goal in weight and her weight progress. In some visits, the dietitian didn't even say if the weight is getting better or worse. And the clinicans request us not to weigh her at home. Is that normal? Because the book suggests weighting the child every week to check the progress and calories intake. My second question is the dietitian uses dietary exchange instead of calories in making recommendations. There is no mention of calories goals, which is different from the book. Between the 1st and 2nd dietitian visit, I had to increase the vegetable intake (which has low calories) and reduce her starch intake (which is higher cal) to give her 5.5 servings of fruit/vegetables and 5 servings of starch per day. My gut feeling is telling me it doesn't make sense. My daughter will ask for one whole pita (which has lower cal) rather than two slices of bread, but they are all counted as two servings of carb.  Overall, my daughter said the ED voice has become stronger. Her cold and clammy hands had improved. She feels like she gained weight. Since the next dietitian appointment is still two weeks away in mid Dec, I decided to try estimate how much I am feeding her every day. She started with around 1000 kcal/day in Oct, and now I am feeding her about 3500kcal/day. I am not sure if I'm doing the right thing because my feeding strategy is based on the book, but the dietitian has a different strategy. And when I bring my daughter for a visit in mid-Dec, should I ask if her weight has increased? Should I ask about her goal in weight? Would that trigger her anxiety? On the other hand, my daughter had already felt her weight has increased. She needs to buy bigger pants. Many times I read other parents know their kid's weight goal. I wonder if this is a common practice to eliminate all weight-related talk during clinic visits. Sorry about so many questions. I'm very confused what's the standard in treating ED. 
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nel
Pandamom,
Welcome to the forum!  There is so much collective wisdom and experience here (unfortunately), and the topics have been literal life-savers for my D.

It's great that your daughter's weight has already increased and that she's had to get larger pants!  That's definitely a step in the right direction.  However, I've found that as a parent, I've needed to have much more control over my D's refeeding than it sounds like your program is giving you.  First, you absolutely need to know her weight; my D does not know her weight and hasn't since we started treatment because it caused her too much anxiety, but I kept track through all of the weekly doctor visits, and now that she's graduated from those, I do random blind weighing at home.  Second, I found that the dietitians gave us the absolute minimum amounts, and I followed it at the start because it was all that I had to go on.  After reading threads on this forum, I realized that my D needed far more than the dietician was recommending, especially of fats.  I stopped giving my daughter options and just presented her with the food; this way, she couldn't choose the lower calorie item.  I cook all of the food without her in the kitchen, and this was huge!  She constantly wanted to know what I was putting in foods, and she questioned the addition of anything that her ED deemed unhealthy.  Keeping her out of the kitchen while I'm cooking has allowed me to add a ton of high fat/calorie ingredients; there are great threads on here that give you tips on how to sneak in calories and fat.  Shakes are what worked for us; between the cream, yogurt, and bulk protein powder, her shakes deliver almost 1000 calories by themselves.

Best of luck to you and your D!  We're all here to support you.
Nel
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MKR
Hello and welcome!

You will find plenty of wise counsel here - all hard-earned through experience. 

Well done for catching the problem early. That is a significant drop in weight over just four months. But you have spotted the signs. Arm yourself with tenacity,  resilience and patience.  And of course,  love which you already have in spades ❤.  No timeto lose here!

To quickly answer your questions:

1. Weighing - there are different schools of thought. Knowing the current weight might upset the child further (and push her into more intense ED behaviour) but it reassures the parent.
Personally, I bought my own scales, I just had to see the progress or I would go nuts. I  hid them, so my daughter could not use them to track her weight loss (if any). Also, the clinic scales and yours might be calibrated slightly differently, as most instruments are, so go by either yours or theirs.

2. The dietitian has started slowly probably due to such a drastic weight loss. But pretty soon this should be stepped up. 3 full meals and snacks in between. And your daughter should have no say in what she is served. (Easier said than done, but the child controlling the meals = the ED controlling the meals at this stage)

There are lots of tips on F.E.A.S.T. on how to bump up the carbohydrate part of the meal. Eg. butter in mashed potatoes, oil in polenta, cream in yoghurt...

Feel free to let us know how it goes. You can vent here, too. We all "speak the language" 😉

Sending you lots of strength! 🏋️‍♀️🏋️‍♀️

Zylie ❤❤
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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MKR
Oh, and weight goal?  Go past the WR (weight restored to pre-ED). And allow for growth spurts (can cause relapse). And allow for brain recovery for ate least a year. 

Some time after WR your daughter might be ready to engage in cognitive therapy and tackle fear foods etc. But right now, the brsin is mainly in Flight or Fight mode where it comes to food.

My daughter lost 15 lbs in four months. We restored that in six to eight months. The ED behaviour is still popping up, even after two years of refeeding and significant gain (gained 40 lbs in total, ie.26 lbs over pre-ED - mainly from building muscle mass - a new issue now).

Don't allow any leeway, you are in charge now 👍.

All the best ❤❤,

Zylie 
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Pandamom
Thank you so much! This confirms my gut feeling. My daughter is usually not around when I cook. I will explore the oils and creams addition. It drives me crazy too not to know her weight since Oct 13. I can see she gain, but don't know the exact amount. I will try to ask for medical record to see. 

Another question, if my daughter was "overweight" pre-ED, does weight restore means her pre-ED weight? She's 5'1", and her pre-ED weight was 130lbs. 
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nel
Pandamom,
Weight recovered is actually not about weight; it's about state (search for threads on "state not weight").  Most of us have found that our kids need to gain more than "normal" in order for the ED symptoms to go away, and this is where we often differ from ED programs that focus on weight and then release the kids before they're actually recovered, which is one reason there is such a high rate of reoccurrence of ED. 

My D has been in treatment for a bit more than a year, and although she physically is within normal ranges for weight, she still has lingering ED symptoms, though they are decreasing, so I haven't let up.  It's also hard because at this age, they're still growing.  My D is almost 16, and although the doctors said that she'd top out at 5'6" or so, she's grown more than 2 inches in the last year and is now 5'8"; that growth totally makes any concept of "pre-ED weight" invalid.  I'll know my D is there when she can cheerfully eat the things she loved prior to ED like ice cream, pizza, cheese, etc.
Nel
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sandie
Hi there and welcome. I am glad your D is making progress and having 3 meals and 3 snacks. It’s definitely a good sign when she needs a size up in pants. It would drive me crazy also not to know the weight although seems to be working well for your D. Maybe a good idea to contact the clinician before your next appointment and ask them to email the weights to you. Your D does not need to know that. And it is best to avoid discussion about target weights in front of the young person as this can cause lots of problems. 

I asked about weighing at home at home to this forum a couple of days ago and nearly everyone has found this not to be a good idea. 

I am not familiar with the exchange system you describe although I think I have seen criticism of it. Everything I have read says keep fruit and veg to minimum during refeeding as they fill you up and are not calorific as you say. Also I agree with you about needing to give as much calories as possible. Many of us research slices of bread in supermarket as there can be a really big difference in calories per slice. 

You up can add cream to bottle of milk in fridge. Make sure it is whole milk. You can also add ground almonds to lots of things. 

I think you you are absolutely right to be reading up about this illness and listening to your gut. There are family guides on the Feast website you can read also. Check out Eva Musby’s website. Also Lauren Mulheim has a great very practical book. 

I hope you find find this forum useful. It has been an invaluable support to me and continues to be so. Xxxxx
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
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Torie
Hello and welcome.  It sounds like you have excellent instincts for helping your d, and it also sounds like you have been saddled with a dietitian whose knowledge about AN is sadly lacking.  Personally, I would ignore anyone who told me to feed my d x number of veggies during weight restoration.  We only had one visit with a dietitian, but she was a true ED-expert, and she did not talk about needing vegetables - she talked about the virtues of butter and bacon.  

Please feel free to ask all the questions you like - we're glad you're here. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
Welcome to the forum, that you have to find your way here. 

It sounds like there are some great things about your team - the idea that they are focused not on weight but on recovery is a great one. You have done a great job of feeding her so far and 3500 cal per day is a great start and may be what you need. 

Most teams do weigh and use monitoring of the weight as a measure of how things are going. It is a part of FBT - in which the person with ED also knows there weight. You will find much debate here about whether it is a good idea for the person with ED to know their weight - it is a fraught area. 

I would avoid weighing at home - the difficulty with this is it is making weight a goal of and in itself. You want your D to be physically healthy, you also want her to be free of ED thoughts. Weight is not actually a part of this recovery. As for goal weight - no one really knows what that number is. There will be growth charts that may give you an idea, but some kids need more than this, some less and some the same. Your D is still growing and will need to continue to gain weight into early adulthood. 

As for exchanges - there are again pros and cons of this. The idea is that it takes the focus away from calories. They are commonly used in adult units for ED and I know that Kartini clinic for example also uses exchanges. They were also used in our hospital program. If there is no progress you just add more exchanges. Agreed not all exchanges are entirely equal in energy content but in real life that is pretty arbitrary also unless things are exactly weighed and measured - which they should not be.   

The thing I see as most concerning is that you don't seem to have feedback for six weeks on how you are going. It sounds like you are going well and in the right direction but feedback at some point is essential to let you know if you should change. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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ValentinaGermania
Pandamom wrote:
She was blind weighed at the initial visit, then one week after,  then two weeks after and then a month after. The clinicians didn't disclosed her weight to us. So I don't know her goal in weight and her weight progress. In some visits, the dietitian didn't even say if the weight is getting better or worse. And the clinicans request us not to weigh her at home. Is that normal?


Hi and a very warm welcome from Germany! I am sorry that you need to be here with us.
I personally think that you as the main caregiver NEED to know her weight and what she gains. How else can you know if you feed her enough? Most FBT therapists communicate weight and weight gain with the parents. You are in charge until she is adult, so ask for that. If they do not want to tell you, think about changing that team.
It is normal not to weigh at home as many patients have a history if excessive weighings, My d did weigh herself around 10 times a day in the dark days. That is why most parents smash out the scales and patients are normally weighed at the GP or the therapist.

Pandamom wrote:
My second question is the dietitian uses dietary exchange instead of calories in making recommendations. There is no mention of calories goals, which is different from the book. Between the 1st and 2nd dietitian visit, I had to increase the vegetable intake (which has low calories) and reduce her starch intake (which is higher cal) to give her 5.5 servings of fruit/vegetables and 5 servings of starch per day. My gut feeling is telling me it doesn't make sense.


You gut feeling is (as always I want to say) totally correct. It does not make sense to increase a low caloric item like vegetables when a patient should gain weight. Please ask if that dietitian is experienced in making patients gain weight. Please ask what her ED profession is.
I know that some US ED clinics do that exchange thing but Ido not like it. It might work with adult ED patients but even there I see with a friend that she sticks very much to that and it has the same bad effect as calory counting.
Cook and serve totally normal meals. 1/4 meat/fish, 1/4 vegetable (fried in oil) and 1/2 of the plate is carbs (noodles, rice, fried potatoes). Add butter cream and oil on everything and stop weighing and counting - it will drive you crazy. Get as much into her as possible and serve 3 meals and 3 snacks. No meal below 700 and no snack below 300 calories was a good rule to start here.

Pandamom wrote:
She started with around 1000 kcal/day in Oct, and now I am feeding her about 3500kcal/day. I am not sure if I'm doing the right thing because my feeding strategy is based on the book, but the dietitian has a different strategy. And when I bring my daughter for a visit in mid-Dec, should I ask if her weight has increased? Should I ask about her goal in weight? Would that trigger her anxiety? On the other hand, my daughter had already felt her weight has increased. She needs to buy bigger pants. Many times I read other parents know their kid's weight goal. I wonder if this is a common practice to eliminate all weight-related talk during clinic visits. Sorry about so many questions. I'm very confused what's the standard in treating ED. 


If you already feed her 3500 that is great and I would stick to the book. If she is gaining weight with it that is enough proof that you are doing something right 🙂.
I would ask for her weight and average gain but not with her at your side, ask that alone without your d. She already knows that she has gained but she does not need to know how much, that will only increase her anxiety.
Buy bigger clothes and change them in her warddrobe secretly and do not comment that.
Keep feeding. There is light at the end of the tunnel.
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Pandamom
Thank you all of you in giving valuable advice. I, too, wish that they weighed her more often. I will ask for that in the next appointment. The dietitian said it was because of Thanksgivings and Christmas holidays. She is taking a week off in Nov and another two weeks off in Dec. All her appointments are booked. I hope I will be able to see her and get her weight secretly every other week.  
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ValentinaGermania
I do not know wether this is an insurance problem but here and also in UK the kids could also be weighed at the paediatrician or a GP. It is not necessary to do that at a dietitians office...
Keep feeding. There is light at the end of the tunnel.
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