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bajedi

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Reply with quote  #1 
Hi everyone,
My daughter was diagnosed with AN this week. We are going to do FBT but I haven't been 'trained' in it yet, I just have a bunch of brochures to read and the goal of getting her eating more regularly until our first family appointment on the 22nd. 

It is in the early stages (we think). She is around the 20 percentile. She has lost weight over the last six months but not dramatically. She has become increasingly fussy about food over several years but the main restriction is a vegetarian diet (although I never saw that as a 'problem' because half of our family is vegetarian). It is school holidays here and her eating is much better than during school term.

What I am confused about is:
How to handle the fact that she is a teenager so she is naturally sleeping until between 10am and 11:30am. For my other (older daughters) I'd just let them have brunch and then a snack and then dinner but with my d with an ED is that acceptable when I am trying to get her to eat 3 meals and 3 snacks? It would seem to be cruel to wake her early; rest is also important.
Today she got up at 11am and wanted to eat in her room as she sometimes normally would. I got around it by finding reasons to pop in multiple times so I am confident she ate it all - but I realise AN can be deceptive too. Not sure how far to impinge upon her freedom.
I am also confused about the rule of not letting her be involved in choosing food and preparing food. There are things that she prefers to eat, just as there are things I prefer to eat. So won't she eat more if she has some say? Also, all helping with meal preparations has always been a good social family activity. Is it naive to think that we have got this diagnosis early enough that I can make sure she eats regularly, then increase the amount, and at the same time have her maintain and then improve her relationship to food?

Her outward presentation of AN has been to avoid breakfast and not eat as much as she should to be healthy at meals. And to eat just fruit or veg for lunch at school (but this doesn't happen at home).

Is it recommended to go down the path of deciding every detail of every meal or if the diagnosis is early enough can an approach that works with the patient more work? I don't want to make her life miserable and all about every two hours Mum putting a plate of food under her nose - I am scared this will make the ED fight back whereas working with her, but fighting the ED together, feels more manageable. But then I am scared I am being naive!

Help please :/


Foodsupport_AUS

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Reply with quote  #2 
Welcome to the forum, sorry that you have had to find your way here. I am sure you have done lots of research and reading so far, but would highly recommend the FEAST learning center via the link at the top of this page. There are also two excellent brochures put out by CEED for families starting FBT. http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartB_Nov_2017..pdf
And http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartA_Nov_2017.pdf


I would love to tell you that you will be able to do this without drama and without resistance fromyour daughter, however no matter how early in the illness you are it is an inherent part that there is a fear of gaining weight and as such it is going to be up to you to get that happening with very little chance of your D not being very distressed by the process. Yes sleep is important, and it is important that we look after their biorhythms. Teens generally need around 10 hours sleep per day, so if she is not up till 11:30 I assume that means she is in bed around 01:30? It is up to you how you manage the meals and snacks, and if you are OK about giving snacks at midnight, sleeping late may work. Since schools generally don’t fit with this, I would suggest trying to establish an earlier bed time.

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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.
Kali

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Reply with quote  #3 

Hi Bajedi,

Welcome to ATDT.
I hope you will get good support here. I wanted to comment on a couple of your questions.

Quote:
How to handle the fact that she is a teenager so she is naturally sleeping until between 10am and 11:30am.


I woke my daughter up at 9-9:30 am for breakfast while refeeding. Later on, when her weight was better, I let her sleep in and changed the meal schedule to look like this: 11 am breakfast, 2:30 pm lunch, 4 pm snack, 7 pm dinner 9 pm snack. The problem with the condensed meal schedule is that they can feel really full the whole time they are awake, and if the schedule starts at 9 am there is a little more time to digest between the meals. You can see what works for your family. I thought it was important to have her understand that she couldn't skip a meal by sleeping in and that the schedule could be a little flexible while at the same time setting expectation that three meals would always be required. But I didn't introduce the flexibility until she had been weight restored for some time.

Quote:
Today she got up at 11am and wanted to eat in her room as she sometimes normally would. I got around it by finding reasons to pop in multiple times so I am confident she ate it all - but I realise AN can be deceptive too. Not sure how far to impinge upon her freedom.


You are not impinging on her freedom, just insisting on accountability when it comes to food. 
I also would caution against allowing her to eat in her room by herself. One of the symptoms of AN can be that the sufferer is uncomfortable eating in front of other people and in order to challenge that fear eating in front of other people is very necessary. Plus you don't want to have a situation where she is saying she is eating in her room but in reality throwing the food out or hiding it. 

Quote:
I am also confused about the rule of not letting her be involved in choosing food and preparing food. There are things that she prefers to eat, just as there are things I prefer to eat. So won't she eat more if she has some say?


We all have likes and dislikes about food, for example my non-ed son doesn't care for fish. So I don't serve it for him. However the eating disorder can start eliminating more and more foods and you may find your daughter saying she won't eat things she has previously eaten. If there was a food she really disliked several years BEFORE the disorder developed, then, by all means, take that into consideration when planning your menu. But eating a full and balanced diet is most likely going to involve serving her foods she will say she "doesn't like" and that may very well be because of the eating disorder. 

I found that keeping my d. out of the kitchen during refeeding and food preparation reduced her stress. She didn't need to decide anything about food, just show up in the dining room and eat it, which was stressful enough. Because the food required is high calorie and it might upset her to see how much butter or cream I was putting in her food, for example, it was easier when she wasn't there. A good illustration of this is that one day she came down and opened the refrigerator to choose a snack, but was so overwhelmed when she saw all the food in there that she was unable to choose anything and shut the door again. It was easier for her if I handed her the snack. If the food was prepared and given to her she didn't need to make any choices at that time. Later on, when she was doing better she was able to choose food on her own.

Quote:
Is it naive to think that we have got this diagnosis early enough that I can make sure she eats regularly, then increase the amount, and at the same time have her maintain and then improve her relationship to food?


This doesn't sound naive it sounds like your goal. Helping your daughter to eat enough and normalizing her relationship to food. 

warmly,

Kali



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tina72

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Reply with quote  #4 
Hi bajedi,
a warm welcome from Germany and sorry that you have to join us. You will find a lot of help here, just ask what you need or come to vent.
Changes in schedule from holidays to school times and back are difficult at the moment. In those early days I didn´t allow to skip breakfast and she had to get up at 9 in holidays. We would not have got all the meals in if we had allowed to sleep longer. That is the price to pay; during refeeding there are things that are different to normal life. But it is a goal for them to get that normal life back so my d today knows that if she keeps her weight she can sleep longer.
It is not cruel to wake her, it is needed. If she had diabetes and needed insulin you would wake her up for that, too. She can go to bed again after breakfast if she likes. You can give her a big heavy smoothie early in the morning to drink and she can roll over and get to sleep again. They try to get up late to skip meals. So please be careful about that.
If she wants to eat in her room, that might also be ED behaviour. Check wether she hides food in her room. If you are not around 100%, I would think she eats not 100%. They hide food in the clothes, in the locker, under the bed. Normally people eat together at a table and not separated in a room.
That is no question of freedom. Not you cut off her freedom, ED does. There is no freedom as long as there is ED behaviour. If her behaviour is normal again, she can have all her freedom back.
Preparing food and cooking is a good social activity for healthy people, but not for ED patients. If she would see that you add a lot of cream, oil and cheese to everything, her anxiety will go through the roof. It is much easier for her to have the plate in front of her and not knowing what is on there.
Choosing food is the same. Most patients cannot choose food in the early stages. My d could choose wether she would like cherry or vanilla yoghurt and so I let her choose between two things. That gives her the feeling she has something to say. But there are days when even that is a problem and when I see that I choose for her.
If there are things she prefer to eat, that are mostly "safe food" things which means ED allows her to eat that. She will not eat more of it than ED allows her, but she will need to eat more of that. And she needs to eat the "fear food" again, I mean food she ate before ED and is now afraid of (for most patients that is pizza, chips, chocolate, cake). So: when she never liked to eat fish before ED, she does not need to eat fish now. But when she loved pizza before ED and is now afraid of it, she has to learn to eat that again.
Normally patients cannot work with you at that state. You don´t make her life worse, ED is making it worse. If you see weight gain by just make her eat regularly, try that, but most of us needed a lot more food than normal to see weight gain (and to hold it). My d (18) is 5 months WR now and we could not put any single calory down up to now. They need a lot more food until the mid twenties.
Tina72

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Reply with quote  #5 
Welcome to a place no one ever wants to have to be but is happy to find when needed!!!  Lots of info and good solid experience here.

Quote:
It would seem to be cruel to wake her early; rest is also important.


Getting in food is more important.  She can always go back to sleep after she eats.  A lot of us have found waking our kids up and giving them a smoothie or something like that while sleepy actually helps get the food in with much less resistance than when fully awake.

Quote:
Not sure how far to impinge upon her freedom.


Freedom and privacy are for healthy people.  The worst thing her ED could have (and it will want it fiercely) is freedom and secrecy.  A good rule of thumb to follow is if you don't see it eaten, it was not eaten.  I found bags of food in my daughter's room for years of things I was sure she had eaten.  Also you need to monitor for burning off calories eaten with purging, overexercising, laxatives, etc.

Quote:
So won't she eat more if she has some say?


You would think that wouldn't you?  On the other hand she has had say in what she eats and she went down the rabbit hole of an ED.  Her judgement is impaired at this point and she needs help.  I didn't force my daughter to eat things she didn't like pre-ED.  For example she hates green peas and bananas and always has so I never forced her to eat things I knew she historically did not like.  On the other hand, her ED hated things with protein in it like meat, etc.  Those things I served and required her to eat.  I think if you did a survey here probably 85-90% of our kids start out their ED by becoming vegetarian.  If she ate meat prior to ED, then serve it now.  You will get kick back but most of us have found that just saying I'm giving you what you need.  Food is your medicine now.  I know how much and what you need, etc. and not arguing or negotiating makes things a bit easier.

Quote:
Also, all helping with meal preparations has always been a good social family activity. Is it naive to think that we have got this diagnosis early enough that I can make sure she eats regularly, then increase the amount, and at the same time have her maintain and then improve her relationship to food?


This might seem a weird example but if your daughter was an alcoholic and a family activity was making wine, would you expect her to participate?  My guess is no since it would increase her anxiety and make her feel excluded.  At this point, having her participate in making a meal is counterproductive.  It seems backwards but excluding her now will help her anxiety be less in the long run as Kali said above.  Her anxiety may spike up initially but in the long run it will be better for her.  Also remember that treating an ED is a marathon, not a sprint so look at long term goals rather than short term.

Quote:
Is it recommended to go down the path of deciding every detail of every meal or if the diagnosis is early enough can an approach that works with the patient more work? I don't want to make her life miserable and all about every two hours Mum putting a plate of food under her nose - I am scared this will make the ED fight back whereas working with her, but fighting the ED together, feels more manageable. But then I am scared I am being naive!


I hate to point this out but her life is miserable right now with the ED.  Every single second is occupied with thoughts of food, how to avoid it, how to hide how little she is eating, how to get out of eating, etc.  Long-term goals here so start out with you plating and giving her food-3 meals and 3 snacks.  If you let ED choose, I can guarantee you every single meal and snack will be the lowest calorie possible and it is nearly impossible to gain weight doing that.  She can't make good choices right now and needs someone else to make them for her.  ED will fight and she will seem more miserable in the short term but long term is what you're aiming for.  Also you should get every single meal and snack eaten with someone to ensure that all meals and snacks are eaten.  Some here have been able to arrange for snacks and meals at school to be eaten with someone like a nurse or counselor.  A lot of people get their kids for lunch in the car at the school to be sure it is eaten.  Some of us have to pull our kids completely out of school to be sure all meals and snacks are eaten without purging and overexercising.

A lot of people find it helpful to pull their kids out of PE/Gym to minimize exercise too.
Torie

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Reply with quote  #6 
Ho Bajediji - So sorry you needed to join us here.  You have gotten good advice already; I just have a couple of things to add.

Before ED, my d was super honest.  Even so, I caught her dumping her milk down the drain, lying about what she had eaten, and hiding food instead of eating it.  Those are symptoms of the illness.  Expect them, and try not to allow opportunities for them to happen.

Quote:
Originally Posted by bajedi
I am also confused about the rule of not letting her be involved in choosing food and preparing food. There are things that she prefers to eat, just as there are things I prefer to eat. So won't she eat more if she has some say? 


Eating food causes our poor kids to be wracked with guilt ... all the more so if they have to CHOOSE the items.  It is easier for them if we require them to eat - it is almost like an evil terrorist has taken up residence in their brain, and it helps them if they can "justify" eating by thinking that mom / mum made me do it.

PLease feel free to ask all the questions you like.  Although we might not like the memories of the early days, we've all been through them.  xx

-Torie

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

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Reply with quote  #7 
Thank you all so much for taking the time to respond. I don't feel as alone and isolated knowing that I have this active group where I can ask questions. 

I will monitor the frequency of the late wake-ups and plan reasons for her having to be up a bit earlier and see how that works. Avoiding breakfast has been a big thing but she knows that if it's 8am or 11am, breakfast will still be served.

My gut instinct on the eating in her room is that it could be a ruse to hide food so I've eliminated that. It's hard, as I am sure you all know, to deny your kids what they see as a freedom, so getting your advice has given me strength.

When it comes to choosing the food, or being involved in cooking, I am wondering if anyone has had a kid with an ED that does not calorie count and does not avoid high fat/carb foods. She is not choosing foods for with that mindset of diet/low fat foods. I'm not sure whether that is from a lack of knowledge or whether it is because what the ED is just focused on is avoiding meals or not finishing meals. She wants to eat pasta, chocolate, icecream, cheese, eggs. She has reduced the variety of what she will eat but not really dramatically. So we're not in a situation where she feels bad (that I know of) because she knows what she is going to eat is fattening. She does get stressed about what to chose if we eat out and this morning I gave her a choice of three things for morning tea and she asked me to chose. But yesterday she actually ASKED for a microwave pasta dish as her afternoon tea just before I was going to prompt her to have a snack! Has anyone else experienced an ED patient who doesn't avoid high fat foods and does that then make a difference to having them be at least partially involved in the kitchen?

Thank you so much
Fiona


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Reply with quote  #8 
It can be tricky to work out what ED is focusing on. When my D got sick at 13 I thought she had no idea about calories. I was very wrong. My D was still able to eat quite a variety of foods when at her sickest. She was however calorie counting and she knew the calorie count much better than me. It was being calculated continuously. My D had few fear foods, it was all calorie based however. Often the more ED is challenged the more resistance is found, so it is worth seeing how things go with regular meals and intake. If she is asking for high calorie meals that is great, and yes it is unusual for AN. Be on the look out for purging some with this type of illness often eat a lot more than those who are purely restrictive. 

As Torie has mentioned, ED makes our children lie. My D was and still is as honest as the day is long, with the exception of her illness. She hated lying but felt that there was no other choice at the time, and it caused a lot of guilt too. Trying to not give the opportunity for lying eases their minds this way too, even though her ED will still question that you don't trust her. 

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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.
Torie

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Reply with quote  #9 
Quote:
Originally Posted by bajedi
My gut instinct on the eating in her room is that it could be a ruse to hide food so I've eliminated that.


I think it's fine if she eats breakfast in her room - what concerns me is if she eats breakfast ALONE.  Since you have been instructed to do some reading, it might be a good opportunity to explain that you are supposed to stay with her while she eats and for at least an hour afterwards.  (That's to make sure that what goes in stays in, but you don't need to tell her that part.)  You REALLY don't want her to start purging. If she complains that you don't trust her, you might say something like, "It's not that I don't trust you; it's just what I do."  I learned from the good folks here to tell me d (before the meal) to use the bathroom so that she would be able to stay with me for at least an hour afterwards.

Some here have made a nice caloric smoothie, woken up ED-kid hours before normal wake-up time with smoothie in hand - "Here, drink this" - and then ED-kid can roll over and fall back asleep afterwards.  Whatever works.

Quote:
Originally Posted by bajedi
Has anyone else experienced an ED patient who doesn't avoid high fat foods and does that then make a difference to having them be at least partially involved in the kitchen?


Personally, I would keep her out of the kitchen at present.  You can always ease into a different arrangement later, but it is harder to go the other direction.  Many / most here add lots of extra fats to sufferer's portion (butter, heavy whipping cream (double cream in UK), canola oil (rapeseed oil in UK), etc.), and it's prudent to avoid having them witness that. I was surprised to learn (here) that if you stir it in vigorously, canola oil disappears without changing flavor or texture of yogurt, soup, pasta, rice, etc. 

We each have to find our own way.  We can't know what is right for you - we can only tell you our own experiences.  So take what "speaks" to you and ignore the rest.  And please feel free to ask all the questions you like. xx

-Torie

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runmum

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Reply with quote  #10 
This is really useful to me too and so simple. I am now stopping D staying in bed too late. It is hard enough fitting all the food in without the challenge of D not coming downstairs till 12.30pm.

D was an excellent cook but, in hindsight, it was controlling ED behaviour. She seemed relieved when I took over deciding what, when and how much she ate. She (ED!) does always grumble that I give her too much food but I can cope with that.

D was also very honest but I later found out has gone through phases of binning her packed lunch.

All the best x
jamiem

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Reply with quote  #11 
Hi, Like everyone else I’m sorry to see you have to use this forum. However things will get easier over the coming months, as you learn the way. There is just one price of advice I can give you. And it is this:

Get Eva Musby’s book. It is on amazon and her only book so just search ‘Eva Musby’ and it will come up. I have also been having Skype sessions with Eva and I am not exaggerating in saying I possibly could have throttled my 14yr old without the help and insight of Eva.

Once you start reading the book, hopefully everything will start falling into place. That is what has happened for me.

I wish you all the love hope and support you and your child deserve every.

Jamie xx
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