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CED123

Sorry – this is going to be a big ramble…

I need a big handhold and am hoping you might help.  Actually what I need is someone to tell me I am not being useless, but I fear that is not possible - in which case I hope someone can help me be better.

My daughter has anorexia and has been in outpatient treatment (in the UK) since middle Jan, after 4 days on bed rest. Currently hovering somewhere about 80-82% so not critical but still not great.  In school but off sport, and very distressed about further weight gain.  She has a meal plan and is generally sticking to it in her own way. Some things she just won't eat (eg the biscuit snack), but she will eat similar calorie options (but of course not more calories!) and so we are kind of stable but not gaining very fast, and always pitching a little low.  And a bit stuck in calorie counting. but she is drinking an ensure shake each day too.

My main angst is that I think we are just being rubbish – all the books say that you need to take total control but it just seems impossible to do that with her.  She just has complete meltdowns and refuses to eat the snack or whatever. We are in FBT but there is no support – it’s basically the meal plan and then my daughter being talked at for an hour.  Her therapist has been happy with progress being slow but maybe he is right as when I upped it one week (and got a whole 700g!) she just lost it.  We had to slow again as she had exams too and we were just all falling apart. But now her exams are over we need to up it again and I worry that we are just too rubbish to manage this. I’ve asked to change therapist and now we seem to just be in a holding pattern where they think she is stuck and aren’t really trying to do anything until we get on someone else’s list, which might take a while. I think we need to keep going and get her weight up.  We have a review meeting in a few weeks but I don’t know where that will get us but basically my plan is to stick with what she is eating, but add something else to get back to more gain.  And then just try to push on through.

but the guilt at being rubbish is just really hard.

thanks to anyone responding and sorry if I'm slow to answer - have to avoid children.

 

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scaredmom

hello CED123,
I welcome you formally to the forum. I hope you find the support you need. 
And yes we can hold your hand through this. 

 A few things as I read your post, and take what you want and toss the rest that does not fit your situation or circumstances. She needs to eat more and you have to be in charge. She needs more calories and meal plans if she knows about them may keep you stuck. She or her ED will hang on to meal plans, they like the rigidity, it gives some comfort when inside they feel chaos. 
Some of us have had to take them out of school altogether and get special accommodations. 
YOU ARE NOT RUBBISH!! It is the illness! 

Yes I agree with you to get the weight up. IF you feel you need a new therapist, you need a new therapist. I would suggest that you interview them first and make sure they are on the same page as you. 

The thing with ED is that unless you are an ED specialist and have studied this, none of us are! We are their parents and to change how we parent them overnight to deal with ED is the most unnatural thing to do. We need to morph into a different person, with different expectations that we had from before. 

Mamaroo, uses the term "benevolent dictatorship" where you set the rules and expect 100% compliance. (I love that term)

So how can we help you to get her better?

What are the struggles you and her have? 

What is she eating, we can help?

We are all ears and this forum has the biggest heart. We can help and we want to.
XXX

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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CED123
what I would like is someone to say what we are doing is ok but I don't think that's true...  🙁

how do you manage to take control? is it ok for her still to make her sandwich if she is eating it? i don't think i can do benevolent dictatorship. 
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scaredmom

You are getting your D help and you care. So that is great!

I know it is hard to get your armour on and fight ED we are all really scared at first. And it takes time for some families to get their rhythm. I "just" had to get it done and yes there was fighting as I took control and it was not fun. And I had to do it. We all find our own way. 

What do you feel we can help you do? Most find that having the child make their own food is not the way to go. All food prep etc belongs to the parent. 
Have you read Eva Musby's books and videos etc.. They are great and can help you too. 

Many have to sit and sit and sit with their child to get them to eat. IT is a hard magic trick to find out how to ensure the child eats. I sat and replated food that was tossed a few times and just sat there.. My D would give in and eat. Other children did not eat at all and they had to take the child to the hospital. 

I would take control first of all the meals. Many have added oils, cheese, cream to the "normal" foods to get the weight up. l
What is she eating, we can help you.
XXX

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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CED123
currently she is eating:

Breakfast

2 weetabix + 200ml semi skimmed milk
200ml fruit juice

Yoghurt (instead of at lunch)

Mid morning

Nothing currently
[at one point 2 Belvita duo crunch]

lunch

Wholemeal bread roll (large) with 2 slices quorn chicken, tomatoes and lettuce

I small fruit

Mid-afternoon

Giant or 2 crumpets

Ensure plus shake

Evening meal

Typically 75-90g uncooked rice /pasta (so ~200g cooked) plus eg chilli, chicken in sauce; or veggie sausages x2 plus mash
2 tablespoons veg

2 scoops alpro ice cream

2nd small fruit

 

Before bed

200mls semi skimmed milk plus cereal (eg shredded wheat bitesize)

 

 

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Ellesmum
It’s as tough as hell and you didn’t sign up for this so you’re certainly not rubbish but I well remember feeling the same.

I asked for blind weighing most of the time so as to keep my d calmer and I added lots of things like cream, Complan and ground almonds to the foods she would eat at first, as weight came on slowly I got bolder at adding things and slowly she became more lucid and logical and I could start to add variety and got braver at insisting she ate.  

It it takes a lot of courage to agitate ED, they kick back at being kept out of the kitchen etc. It can seem easier to give in but this just prolongs the agony for both you and her 
Ellesmum
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Ronson
Hi

You are not rubbish - this is really hard.  So my observations would be as follows. 


We switched to blind weighing and that really helped us - when there were big gains there was no backlash and we have seen consistent weight gain. 

I spoke to CAMHS and we decided that I would see them to chat about how things are going but d has no contact except for weights and vitals.  This has worked for us - I’m not saying it will for everyone but it is a suggestion.

The dictatorship bit is hard but actually what they need.  Once you know it’s what they need it becomes easier.  
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CED123
with blind weighing, do they not worry more that they have put on 100kgs?
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Ellesmum
Just saw your meals,  so I’d swap out the milk for whole, changing cartons if necessary, add oil to the chicken sauce,  any oven baked food can take a fair bit of oil to coat (it disappears in the cooking) castor sugar dissolves in juice well.  Double cream can be stirred into yoghurt easily.   I don’t know ensure shakes but perhaps they could take extra double cream or blend in Complan?  If she’ll eat the weetabix mushy then Complan can also be stirred in here.  Extra cream in her mashed potatoes. 

Just a few ideas of the kind of things I did in the early days.
Ellesmum
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Foodsupport_AUS
You are doing the best you can right now. It is really tough, but you are right she needs to be gaining more. She has a long way to go with weight gain and at the current rates I would suspect it is going to take two years or more. Of course she loses when she gains weight that is normal ( we had a major melt down over 50g) so sometimes it doesn't matter how much they gain. 
You have already said that you know you need to try something different, and I think we all agree, because at present it is keeping her "stable" but not really improving her health. 

I am a parent who could never take over completely with my daughter. Any meals that were off plan were not touched, and we had so many hospitalisations for not eating in the end it was just better to go with an agreed plan. I agree that asking for blind weighs is a good idea. There will be resistance at first, as there was with my D but ultimately it was what allowed her to gain weight without constantly hearing that she was. We gave minimal feedback on weight with blind weights. She was only told if she had lost weight as she knew that meant she was closer to readmission.  I would also recommend switching preferably to you preparing all meals, along with switching to full fat milk. She will be very resistant to this and it may take some time, but ultimately it is what is going to allow you slowly but surely increase her intake, which is of course what needs to happen. If at all possible avoid pre-prepared or pre - portioned foods. It fits right into ED and makes it incredibly hard to increase food intake. Make sure there is butter on the roll at lunch time. If at first there is resistance you could use guacamole or hommus instead - they seem more "healthy" , when you make your mash - only add butter. It tastes delicious and is much better than adding milk, butter and oils also soak well into rice. 
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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CED123
Thanks all for thoughts. Off to bed now but will continue reading tomorrow.
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Ronson
Our experience with blind weighing has been that she has not asked her weight and shown no interest. It was as though once the figure was taken away it was no longer of importance - I found it very strange but it has worked 
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Hesic1092
I dnn't have any answers for you, but can very much relate to what you are going through.  My D was diagnosed AN in December 2018 and has gained about 2 kgs over the last 4 months.  but slowly and weeks of gain were always followed by a week of a small loss or staying the same.  I've tried a few times to take over control of her food and her behaviour escalates greatly,   Screaming, pushing, freaking out basically.  I know its the ED reacting and not her, but doesn't make it any easier.  She seemed to be eating better when I gave her control, but I know it wasn't helping to get rid of ED.   Today is day 1 of FBT for us and I'm determined I'm going to get through this and control her food.  Not sure how I'll do it, but I have to find the resolve 
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needhelp
You are NOT rubbish!!  Although it seems the goal of an ED to make you feel that way.
I am not sure I can offer suggestions - as my daughter came home from school.  She worked with 3 professors to keep 3 classes (I was encouraged that she was like, "this is NOT going to stop me" - although, that honestly didn't jive with some of the other stuff she said - but it was nice to know SHE was still in there.  The trick she found for getting food into herself was being distracted by watching videos.  Ironic - because she never was into television - but - whatever works.  Odd that she watched cooking videos - mostly cake videos - but again - the distraction kept her at the kitchen counter, and she ate.  We all sat for dinner together.  She did eat - but at first, it was often followed by the post meal remorse -- but, despite the heartbreaking drama of that - inside I reminded myself that she had just taken in a certain amount of calories - so that part was good.  Can you take her out of school and have her do classes on computer for a bit - allowing you more control and food around?  What are your plans for the summer (totally don't mean to stress you out with that - just wondering if you might be able to find more ways to get more calories in her -- it's hard at school).  Also, she still does blind weighing when she goes to the doctor for an annual visit (and I call and remind the doctor and nurse that she will do a blind weigh in and NOT to say her weight).

We are here to hold your hand - I think we have all had our hands held, and still need that at times.  You are safe here - we get it.  Please be kind to yourself - ED will be plenty nasty.  Your daughter is so fortunate that you are working so hard for her -- she will realize that in the future - they just do : )
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debra18
There is a video on YouTube called Eating Disorder Meal Support. I found this very helpful. I discussed with my daughter the night before what she would eat and allowed some negotiations that we're calorie equivalent like a cup of whole milk or two cheese sticks. When the meal came there was no negotiation. My daughter did not miss school. She was supervised in a private room. Also Eva Musby has very good videos.  It's a long journey but it gets easier.
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CED123
Thank you all - you are alll really helpful. I have the Eva book, and have even spoken with Eva a couple of times, but am still struggling to put it into practice.

The 2 years has really resonated and I think you are right.  plus seeing this morning how she is underserving milk and juice, I do need to take control somehow.  she has just gone completely ballistic about my even watching her milk and asking her to add more  - which underpins why we need control but also how difficult it is going to be.  she is so completely miserable and of course thinks we are totally to blame, which makes it really hard. plus she has younger siblings so it's hard on them too. we're away next week (in a hotel - it's going to be hell), and have the review the week after, so I can't realistically do much before then.  I'm hoping after the review I can present it as the ED team's plan FWIW.

school is actually good for her I think - it's a distraction (she's very academic).  she is usually almost normal after school for a little while and weekends are much worse.

Hesic1092 - we are pretty much on the same time lines. I realised in November/December and she was diagnosed and in the ED team in jan.  gained about 1.4 kg in total since then. perhaps we can handhold each other.
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tina72
CED123 wrote:
I need a big handhold and am hoping you might help.  Actually what I need is someone to tell me I am not being useless, but I fear that is not possible - in which case I hope someone can help me be better.


We are here and we are actually quite good in handholding and cheerleading and I am glad that you found us.
And you are not useless at all. To be honest you are the most important person in FBT and refeeding and you are her ticket out.

CED123 wrote:
My daughter has anorexia and has been in outpatient treatment (in the UK) since middle Jan, after 4 days on bed rest. Currently hovering somewhere about 80-82% so not critical but still not great.  In school but off sport, and very distressed about further weight gain.  She has a meal plan and is generally sticking to it in her own way. Some things she just won't eat (eg the biscuit snack), but she will eat similar calorie options (but of course not more calories!) and so we are kind of stable but not gaining very fast, and always pitching a little low.  And a bit stuck in calorie counting. but she is drinking an ensure shake each day too.


Is she gaining about 500-1000 g a week? If not you will need to add more food to get her WR asap. The sooner you get the weight on the sooner her brain recovery starts and you get your old d back.

CED123 wrote:
My main angst is that I think we are just being rubbish – all the books say that you need to take total control but it just seems impossible to do that with her.  She just has complete meltdowns and refuses to eat the snack or whatever. We are in FBT but there is no support – it’s basically the meal plan and then my daughter being talked at for an hour.  Her therapist has been happy with progress being slow but maybe he is right as when I upped it one week (and got a whole 700g!) she just lost it.  We had to slow again as she had exams too and we were just all falling apart. But now her exams are over we need to up it again and I worry that we are just too rubbish to manage this. I’ve asked to change therapist and now we seem to just be in a holding pattern where they think she is stuck and aren’t really trying to do anything until we get on someone else’s list, which might take a while. I think we need to keep going and get her weight up.  We have a review meeting in a few weeks but I don’t know where that will get us but basically my plan is to stick with what she is eating, but add something else to get back to more gain.  And then just try to push on through.


Sorry to hear that your FBT therapist is not that helpful as he should. Did he tell your d she has to eat what you serve without negotiation? Ask him for more support and for appointments without your d.
It is normal that she has meltdowns and screems and hit you and throw things when you try to take over but you need to do it. It must have consequences when she refuses snacks or meals. And incentives when she eats what you serve. It seemed impossible for mostly all of us to do that (my d was 17 and nearly adult when we started FBT) but it IS possible when you stay strict and when you are convinced that you can do that.
When the therapist is happy with slow progress that would ring my alarm bells. He should know that it is evidence based now that fast progress and fast weight gain is best. 700 g a week would be totally normal and great to see EVERY week. It was also senseless to slow down during exams because the exams took a lot of energy from her and my d needed to eat an extra snack during exams because she lost 1 kg just by learning.

You need to get her to eat 3 meals and 2-3 snacks to keep her bood sugar constant and to see constant weight gain. Tell her you have taked to another professional (Eva) and she has told you what to do and you are an expert now (fake that until you believe it yourself) and you will do magic plate now and serve all meals and she has nothing to do but eat them. Try to go through this hell that will follow and keep insisting in eating and following the rules. Most parents experience a big fight, then a less big fight the next day and then less fight when they stay strict.

Keep feeding. There is light at the end of the tunnel.
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tina72
CED123 wrote:
with blind weighing, do they not worry more that they have put on 100kgs?


We changed to blind weighing too as I had really no chance to get her WR with open weighings. As long as she knew her weight she was torpedoing all my efforts. When we started blind weighing that was a game changer here. Like ronson said, she did not even ask for her weight any more and was not interested in it at all. Up to now 2 years in recovery she says she does not want to know her weight and her dream is to not need to be weighed at all in future.
Keep feeding. There is light at the end of the tunnel.
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tina72
CED123 wrote:
I do need to take control somehow.  she has just gone completely ballistic about my even watching her milk and asking her to add more  - which underpins why we need control but also how difficult it is going to be.


Get up a bit earlier, prepare breakfast for all and put the plates on the table. We started to have magic plate for all family members and that worked. We live with the inlaws and grandpa said he feels like living in a restaurant or hotel now 🙂.
You need to be a dictator. You are in charge, you chose what and how much. You would not go to see the cook and discuss portion size in a hotel or restaurant. Same here.

CED123 wrote:
school is actually good for her I think - it's a distraction (she's very academic).  she is usually almost normal after school for a little while and weekends are much worse.


They all are academic and highly intelligent or even gifted. That is part of the ED genom. Is her lunch supervised in school?
Keep feeding. There is light at the end of the tunnel.
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tina72
CED123 wrote:
currently she is eating:

Breakfast

2 weetabix + 200ml semi skimmed milk
200ml fruit juice

Yoghurt (instead of at lunch)

Mid morning

Nothing currently
[at one point 2 Belvita duo crunch]

lunch

Wholemeal bread roll (large) with 2 slices quorn chicken, tomatoes and lettuce

I small fruit

Mid-afternoon

Giant or 2 crumpets

Ensure plus shake

Evening meal

Typically 75-90g uncooked rice /pasta (so ~200g cooked) plus eg chilli, chicken in sauce; or veggie sausages x2 plus mash
2 tablespoons veg

2 scoops alpro ice cream

2nd small fruit

 

Before bed

200mls semi skimmed milk plus cereal (eg shredded wheat bitesize)

 

 



My ideas:
Breakfast: too much liquids, too low energy food. More carbs needed (Porridge?). No semi skimmed products and full fat cream yoghurt (greek version).
Mid morning snack: why does she have none? Needs to be nearly the same as breakfast.
Lunch: forget lettuce and fruit and vegetable. More energy food. Can you introduce a homemade fruit smoothie to drink here?
Mid afternoon: change ensure plus to a homemade milkshake and add a muffin
Evening: add canola oil to the rice (sucks in), add cream or oil or butter to the sauce
Bedtime: Full fat milk
Keep feeding. There is light at the end of the tunnel.
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CED123
and do I do both fights in one - ie taking control and changing foods completely? or take control but mainly stick to her safe foods, and re intro other foods later? 
I know from past weeks that I have more chance of adding belvita/shakes (ie increasing the foods she does eat) than getting her to eat a muffin for example.
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CED123
tina - (don't know how to quote, sorry). her lunch is not currently supervised in school. 
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Ellesmum
CED123 wrote:
tina - (don't know how to quote, sorry). her lunch is not currently supervised in school. 


This is something to look at urgently, if the school has a nurse or pastoral lead they should be happy to supervise. Mine has the bulk of her lunch supervised and can then join her friends for extras.  

I started on safe food with added extras and kept bulking up the calories until I saw slight improvements in her mental health, by the end her small bowl of oats that were ostensibly 150 calories were more like 700 so bold was I at flinging in extras.  
Ellesmum
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debra18
I also started on foods my daughter considered healthy like oatmeal, brown rice and whole wheat bread. Changed over to food she used to eat slowly. I started at 1000 calories and increased until she was gaining at about 2300 calories . Had to increase twice when she got stuck( by adding more to her shakes) until 3000 calories. As I increased, all of the behaviors started popping up like hiding food and spitting.
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tina72
CED123 wrote:
and do I do both fights in one - ie taking control and changing foods completely? or take control but mainly stick to her safe foods, and re intro other foods later? 
I know from past weeks that I have more chance of adding belvita/shakes (ie increasing the foods she does eat) than getting her to eat a muffin for example.


Sorry, I was off for lunch here 🙂.
There is no rule about that but in most cases it is better to take the bull by the horns and to fight that all through at once. You need to fight anyway so you can make it worth it. If a muffin is fear food for her (make a list what is fear food that she won´t eat now but ate before ED) then start with safe food and increase portions and work on fear food later. There is no right or wrong, you need to find out what works best.
If her fear food list is longer than the list of food that is safe you need to tackle that earlier (for example if rice and noodles are fear food you will get a lot of problems to get weight on without that).
Keep feeding. There is light at the end of the tunnel.
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