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

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moonshine
My 19 year old step sister (SS) is trying to recover from AN. She's been ill since she was 14 (although has had mental health issues since around 8 years old), me and my H are her main carers. In terms of her recovery, well it hasn't really been a recovery. She's maintained a low weight for many years, keeping herself at a weight which is out of the major danger zone where she is mostly able to function, but still quite underweight. She saw CAMHS for a few years, then was transferred to adult ED services - both were pretty useless. Most recently she decided to take up the offer of day patient care at adult services. To put a long story short, they fed her barely anything, didn't seem to be a weight gain plan at all, and she actually lost weight (albeit a very small amount). She quit day patient about a month ago.

It has taken ages, but I've finally managed to persuade her to let me feed her and control what she eats (basically magic plate I think). However, she's asked that I create a meal plan and follow that. She says that she wouldn't trust me to do it all free rein, and to be honest I can see why she would want some sort of structure. I haven't told her this but it'd probably make life easier for me to feed her if there was a sort of meal plan in place - I have 2 young children of my own to take care of so life is very hectic!

I have told SS that if there is a meal plan, she will not see it and I will vary it enough so that she can't pick up on any routines (one of the problems with the day patient programme was that the foods were pretty much always the same, so she was able to figure out how many calories they were giving her etc - the rigidity and sameness of it all just fed the ED).

Ideally I do not want to start counting calories religiously, however I plan on loosely keeping track of SS's intake and a meal plan will help with this. The only problem is, I have no idea how many calories to aim for. I apologise for coming here to ask about this but the only dietician in my area is the one at adult services - I tried asking her about how much to feed her and she started telling me that SS is the only one who can recover and she needs to do it by herself!!

Sorry for the ridiculously long post, but I guess this is my question - SS is currently at BMI 16.5 (I know I should go on state rather than weight but the truth is I do not know what her state of mind is like - she is very good at hiding her true feelings, we are working on her opening up to me however that is a long process). She is lightly active, does about 20 minutes walking a day (to and from college). At 19 years old, how many calories should I be feeding her? And is there anywhere/anyone who can suggest a sort of meal plan?

Feels like this will never end...
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K63
Hi Moonshine, well done to you for helping your step sister. There is lots of people here on the forum who will offer great advice.i am presently refeeding my 18 year old d and have had to increase the calory as she wasn't gaining . Also I would cut out the exercise until she is weight restored or at least well above a bmi of 18. I am giving my d three meals and a nutritious drink 125 Msl 300 calories after each meal and two snacks daily so each day's is
Breakfast : a breakfast muffin or scone or boiled egg and 2 slices of toast and a nutriplen drink. 8 am
Snack. : yoghurt. 11 am
Dinner : meat , veg and potatoes or curry and rice or pasta and meat or spaghetti bolognaise.
Desert or chocolate bar or ice cream. Plus a nutriplen drink 13.00
Snack: piece of fruit 16.00
Supper: sandwich with two slices of bread or pitta with filling or wrap with banana , ham and cheese or two sausages or other filling plus a yoghurt plus a nutriplen drink . 18.00
Adds up to about 2,200 - 2,400 calories a day
It took a while to build up to this much as she was resistant to increase she is increasing .5 kgs to .9 Kg weekly on this . I give her the same portions as we all eat and she needs full supervision for all meals and supervision after eating .

Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
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mdmama
It is so good of you to take this on-- I hope it works out for you and your SS.

I kept track of all meals and calories for the first month or so of refeeding my daughter (including the weeks after she was released from a 6-day hospital stay for AN) and then stopped counting the calories because I had a pretty good idea by then of what my standard offerings contained. We started out by aiming for 2,500 calories/day and then increased it to 3,000/day after she came out of the hospital. She was only just 12 years old and weighed 67 pounds when she entered the hospital (she's 93 pounds now), so I would think a 19-year-old would need at least 2,500/day, probably more.
In case it is helpful, I am attaching a few of the meal plans that I relied upon. The measurements aren't in metric (we're in the U.S.) and there are references to American stores and products, but it can give you some idea of how a day adds up. "Boost" is the product "Boost VHC," which I bought on Amazon, and has higher calories than typical grocery store nutritional supplements. "Milk" is in quotation marks on these lists because it was really 1/4 cup half and half, and 3/4 cup whole milk. 
Also-- since the days when we made those plans, we were encouraged by our nutritionist to make sure that EVERY meal included a caloric beverage, as K63 mentioned. When we started to do that, we saw the weight go up even more. Previously my girl had been mostly a water drinker. Now she has either whole milk, lemonade, orange juice, or another juice with every meal and milk with her dessert each evening. "Liquid calories," as our nutritionist called them, are such a quick and relatively easy (for some patients-- including my daughter) way to add heft to a meal.

I hope this is somewhat helpful. Good luck.

_______
D diagnosed with AN November 2015 , the week she turned 12. Gaining slowly but steadily, fingers crossed...
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Torie
Hi Moonshine - Welcome to the forum! So great that you are working to help your ss.

I understand why you would like a more formal meal plan, but I just want to throw this out there: What I found simplest was to feed my d an amount in between what her sisters would eat and what her dad would eat. I've never counted calories so I wasn't good at that part, but I've always plated everyone's meals, which gave me a rough idea what a normal serving looked like. 

I realize that probably won't be a helpful idea for you, but at least it gives you one more post to read. Please feel free to ask as many questions as you would like. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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ooKoo

Welcome to the forum, and well done for helping your Step Sister through recovery.

It isn't easy, and for the better part will seem like a thankless task.

My D is nearly 17 and her colorific intake needs to be 2,500 and upwards for weight recovery. 

It helps my D to have a meal plan, so that she is aware of what is coming up on each day, as for her, it relieves a little bit of the anxiety.  It also really helps her to know what time each meal/snack is going to be.  Any last minute changes to this cause her a lot of stress.

Good luck with the refeeding.  Keep us posted.

UK - South East

19 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions. 
2017: CAMHS CBT. WR, dropped out of 2 different colleges and started an apprenticeship.  Started having grand mal seizures and was diagnosed with epilepsy in Nov 2017. Sacked from job because of this.  Tribunal ensued.
2018 - doing a Psychology degree through Open University and working in retail to pay her way in life. Relapses with eating disorder in June 18 and Nov 18 😢. 

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
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Psycho_Mom
Hi and Welcome!

Please feel free to make your posts as long as you like, and ask as many questions as you need. Refeeding someone is hard and very confusing, and there's lots to learn.

The basic answer to how much to feed your step sister is: as much as she needs to gain. (1-2 pounds a week is a doable goal.) Therefore one usually needs to have some way of knowing whether or not there's a gain. Will you be checking her weight regularly? Some people have managed refeeding without weight checking, but....I don't know how! 

When refeeding my d, I secretly counted calories and kept track. I think I started at about 2500, and then I figured that if I wanted do to gain 2 pounds a week, and it's about 3500 calories to add a pound, that's 7000 more cals a week or another 1000 a day. Which in the early days I added with a smoothie (lots of recipes on this site.) As refeeding progresses tho, caloric needs change. So I kept track of her weight gain and if it slowed, I added more food. For a long while she was having about 4500 a day.

best wishes,
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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strugglingthrough
Our D is almost 18. We found she did not gain until we cut back exercise and increased food lots. We do 3 meals and 3 snacks daily. She now eats the same as father at meals but with puddings or yoghurt or a cookie too, then snacks and drinks on top. Fruit is an extra but doesn't count as pudding anymore. The real game changer for us was swapping water for calorific drinks at all meals and snacks. Smoothies, milk, hot chocolate or juice - 6 times a day.

It's great that you are supporting her this way. Good luck.
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moonshine
Hello all,
Thank you so much for your replies and advice, it's really useful.

In terms of the exercise, unfortunately I am not really able to stop that. SS had a very long phase of compulsively walking for a long time each day, however together we have reduced it to what I would consider to be unavoidable exercise - which is just a 10 minute walk to college and 10 minutes back (H takes the car to work so I can't drive her in). I walk with her to college and back so that I know she isn't doing extra exercise.

She is still being seen as an outpatient at the adult ED services, so she gets weighed there at her appointment each week. Currently she has agreed that I can come in to the weigh in room and see her get weighed so that she can't lie to me when she tells me her weight. 

Admittedly SS does have a problem with 'liquid calories'. She is addicted to diet coke - without at least 1-2 500ml bottles of it a day she starts complaining of awful headaches. The highest calorie drink she will have is those low calorie highlights hot chocolate sachets. Should I be pushing her to quit the diet coke? We never had any fizzy drinks growing up, apart from special occasions, so I wonder if it is purely an ED thing. I'm certain the highlights hot chocolate is an ED thing - she used to love chocolate.

Another question - how do I know what her ideal weight is? I have no previous weight records from before she got ill. Height wise she's always been on the short end of the spectrum, like our mother. Before ED she was slim and petite but I have no clue about her weight trends/centiles etc. Can't go on periods either because they always seem to disappear below around BMI 17, and always return when she gains to around that BMI. Is there any way of me knowing her healthy weight?
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Torie
moonshine wrote:
Admittedly SS does have a problem with 'liquid calories'. She is addicted to diet coke - without at least 1-2 500ml bottles of it a day she starts complaining of awful headaches. The highest calorie drink she will have is those low calorie highlights hot chocolate sachets. Should I be pushing her to quit the diet coke? We never had any fizzy drinks growing up, apart from special occasions, so I wonder if it is purely an ED thing. I'm certain the highlights hot chocolate is an ED thing - she used to love chocolate.


Sounds like she gets headaches from caffeine withdrawal if she skips the Coke. ED sufferers do tend to like caffeine because they think it boosts their metabolism so that's a whole nother can of worms. But if it's best for her to continue with caffeine at this point, there are plenty of other ways to get caffeine - the most obvious of which of course would be regular - not diet - Coke. Could you serve the Coke in a glass and give her regular instead of diet so she doesn't have to stare at the label?

I'm not sure what hot chocolate sachets are, but could you add a little heavy whipping cream (double cream in UK I think) and gradually build up to quite a lot of HWC added to each serving?  

Maybe others will have good ideas for how to guess what might be a healthy BMI for her. I think the main thing is that no one can ever know for sure until the hoped-to-be-adequate weight is reached and see if improvements to state start to appear after a few months at that weight. You could make a guess - a not particularly well-informed guess - by thinking back to what her pre-Ed shape was like: medium, thinnish, or full-figured and see what BMI that corresponds to given her age and height.

It's really great that you walk to school and back with her, especially given that you also have two little ones of your own to care for. Busy days, I'm sure! xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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iHateED
Hi Moonshine,

A few thoughts --

The 10 minute walk does not sound bad, as you are with her and know she is not running and adding any distance to the trip.  Walking at a slow pace can be helpful.  When she is home, make sure she is not secretly doing exercises in her room, like push ups, squats and other quiet movement. 

The diet soda addiction may be a tough one to break.   Perhaps you could start with cutting the amount in half for a few weeks.  I too like fizzy drinks so after giving up my diet soda, I switched to flavored seltzer waters.    You can buy flavored syrups which you can add to the seltzer water to give it some sugar and flavor.  The headaches will lessen as her body gets used to not having as much caffeine.   But I would definitely try to add in some other caloric drinks.   Will she eat cereal with milk?  Or oatmeal made with milk instead of water?   Does she need to know what's in her food, or is she trusting you to prepare it?   If she is willing, I think you should try making her a smoothie and having her drink that once a day.  You can pack sooooo many calories into one smoothie without detection!  

As for weight, I have always heard that at the minimum, a person of small frame, should weigh 5 pounds for every inch over 5 feet tall.   So a person who is 5 feet 4 inches tall should weight a minimum of 120 pounds.  The minimum weight would be higher if the person is an average or larger frame.   Have them check her height the next time you go with her to get weighed.   Also, when she is weighed, do they have her put on a gown and no clothes underneath?  This is very important because many items can get hidden in clothes to add false weight to the scale.  Even her bra should come off!   My d added a five pound weight to her bra and even the ed specialist didn't notice it for weeks!!!!!!  Sadly, this is very common of suffers to do.  The ed makes them do it.    

I know it has been said before on this forum but you will know in your own gut instincts when she is a good weight.  If you are still seeing lots of ed behaviors, she is too low!  Also, don't be alarmed if the initial weight gain goes to her stomach and face.  This is very common.  The body is so happy to have nutrition that it uses it to protect the vital organs first.   My d complained terribly of feeling bloated but over time the weight got redistributed to the rest of the body. 

Good luck to all of you.  You are a wonderful sister to help her get through this illness.   She can and will recover with your help! 
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moonshine
Thanks again for all your advice, it really is very helpful.

I think SS drinks diet coke as a zero calorie alternative to water - which she has disliked all her life! (Our mum had major issues getting her to drink enough while at nursery, school etc.) She seems to have started using it as a way to fill her up, but has become addicted to the caffeine in it.

I have tried swapping diet for normal coke but she could immediately taste the difference even though I hadn't told her and she didn't see me pour it for her. Since then she has insisted on having it in from unopened cans/bottles so that she can open it herself and know that it is definitely diet.

We have agreed that she will reduce to no more than 1 500ml bottle/2 cans per day. I'm hoping to persuade her to quit it completely but she's very very stubborn...

When I make SS's oatmeal or cereal, I use milk. If she does it herself she always needs me there to supervise her and ensure she has the milk (rather than water). She can be extremely subtle and will sometimes try to use a mix of half milk, half water, but I caught her in the act last time it happened and have been extra wary ever since. ED is a sly devil.

She does, at the moment, need to know what is in her food. As much as I try and ban her from the kitchen while I'm cooking or preparing meals, I can't make her leave the room. Distractions don't work - she refuses to engage in anything that could be an alternative activity to her watching me get food. It seems to be a compulsive thing for her to have to see what is going in whatever I'm cooking. She used to insist on making all her own food and meals, but I have got her to start eating family meals. Luckily, she will also let me serve her portion now which used to be a big issue.

SS is 5'3 (160cm) and has been since just before ED started. Runs in the family - our mother was 5'2, I'm 5'4... She is weighed fully clothed, but the ED services ask that patients wear light clothing (no jeans, jumpers etc.) and anything considered heavy like cardigans, shoes, coats, some jewellery, have to be removed. Me and SS have agreed that I can supervise her whilst she gets changed before we go to her appointment each week, so that she doesn't try and fake weight gain. She wears exactly the same clothes to weigh in as well.

I am concerned about bloating and the initial weight gain to stomach etc. SS has major body image issues and I don't know how to help her deal with the (hopefully) inevitable weight gain. Any ideas on this? She has self harmed badly in the past, and I don't want this to start up again if/when she gains - has anyone dealt with this?  
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iHateED
My d used that trick too, of watering down everything in the fridge.  When we were not looking, she would add water to all the milk and juice cartons.  I bought a padlock and would keep the fridge locked when I wasn't home to supervise.   Also locked it every night because she would sneak down and add the water while we slept!  This illness makes them do crazy things but you have to keep remembering it IS THE ILLNESS making them do it.   
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Trytrytry
If you can do the same, have the milk and other ingredients you will use for her have benecalorie or cream or oil pre-mixed in so when she sees is coming out of the containersyou aren't adding. I have also used something called 'polycose' http://www.amazon.com/Polycose-Glucose-Polymer-Unflavored-12-3-Ounce/product-reviews/B000ARPKCG I haven't seen others mention it here but you can put it in water and it dissolves clear and tasteless - add to hot chocolate, it can be added to soft drink, however when I tried it didn't change the taste but it made it flat
You can test yourself to see how much you can add without noticing.
I mention things that you may have to go online to find like benecalorie which adds calories but mixes in without changing taste/texture, adding cream to milk or putting normal milk in the no fat milk container - u could do this when she is at uni.

Will she eat yoghurt - make a yoghurt smoothie buying whatever brand large tub she will have, take some out remove some and replace with cream and oil etc mixed in and mix with frozen fruits, ice then it seems healthy and you can sneak a lot of benecalorie and oils into the yoghurt tub.
Experiment when she is not there, you can add lots of calories without it being noticed - Coke, I can tell the difference between diet and real Coke.
I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
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Psycho_Mom
Hi,

A few ideas:

A basic problem is that your d can't/won't let you be in charge of what she eats and drinks. Yes? Perhaps you could approach this in a laddered exposure therapy type way. For example, would she allow you to prepare an amuse bouche? (That's a tiny appetizer, about one biteful). She would stay out of the kitchen and have no input into what you prepare. But, it's only one bite. (And then on to the meal as you usually do it.)

Do that a few times, and then move on to the next step...you preparing a small snack without input from her. This is laddering, and it's slow but it works.

As for Diet Coke, no, regular Coke is entirely different (pleech, so syrupy!!) And yes, either one will give you headaches for a few days if you stop them. I also found sparkling water a helpful substitute (or tonic water!! how about that? it has calories but it's not sweet.)

best wishes,


D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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Torie
Yes, of course diet Coke tastes different than regular, but the argument doesn't seem to be that she needs diet Coke because it's delicious - she says she needs it to keep the headaches at bay. Regular Coke will do just fine for that.

When in college, we had a beer tasting party (yes, this does tie back in) and everyone blind-tasted all the samples and picked their favorite., but  What was hilarious was that a few people accidentally picked the brand that they always made fun of as the worst possible beer, and when they were given a bottle of it at the end (everyone got a bottle of whatever they'd rated as number 1), but people just really couldn't drink it out of the bottle that had the label and so had to put it in a glass to get through. That's why I suggested putting it in a glass "so she doesn't have to stare at the label." However much she hates it would be that much worse with the label on.

I don't think tonic water has caffeine, but Mountain Dew does. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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