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

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sunny6
We have tried multiple times to move our child to "phase 2" and end up having to take back feeding.  We want to move forward and sometimes I feel that them not seeing the progress in terms of freedom is quite frustrating and sets them back.  However, we have done this for 2.5 years now and have no trust in what they say that they are eating.  When we try, weight is lost.  They say it is their recovery and we need to support them, but again, the weight goes down and we cannot just say oh, try again or you need to eat more without significant resistance.  It is in fact what we tell our child.  If they didn't eat enough out and we ask for them to eat more and they refuse, we tell them that this is an indicator that they are not ready for recovery on their own.  This only upsets them more and can turn into a power struggle where eating becomes the battleground. 

Therapists have said that they know what to do and just seem stuck.  No offer for help, just telling us that we need to send our child to IOP.  Our child is very resistant to therapy of any sort.

How do you successfully move into this phase and how do you learn to trust when everything said to you (even something like wearing a siblings clothes) is a lie?

I know our child is there.  We have seen more of them lately laughing with siblings, but any boundary is met with a fight.

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Enn
Hi sunny6, 
I think every kid and situation are so different. It is a few steps forward and a few back. Many have had to go back to taking control from their kids a few times over. 
I learned to take things really slowly. For example I would give d only two choices for snack, a granola bar or cookies. I do not think d could handle much more at that time. At the beginning when we did offer her some choices it was only a few times per week at the beginning. Overtime we developed a larger repertoire of snacks for her to choose from and I monitored them all. I still do to some extent. It is three years now. 

My d to this day has learned what a good breakfast is or lunch but that only came with the meals I made. 2 pancakes and butter and syrup - not one. That is a given here. She now I guess, chooses what she was given by me over the years. There really is no choice when it comes down to it for my d. Breakfast is a meal I have made her many times over like the pancakes I mentioned. Or lunch is a grilled cheese with 4 slices of cheese, and a juice. Snack is cliff bar, or three large cookies or 4 small, or bowl of chips etc.. all with a drink as well. She knows she has to have three meals and 2-3 snack every day no matter what. That is not a choice.  My d still does not plate her supper. I still do that. She is 15. 
I think the part after WR is harder and more nuanced than WR. That is usually a "hard" goal. This is more creative and it is always best to go really really slowly. It allows them the small successes and builds their confidence and it keeps you on top of even the tiniest of backwards slips, which are easier to recover from.

I hope that helps a bit. I am so pleased to hear that you have seen the light of your child shining through as they laugh with their sibs! How lovely! 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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sunny6
Thanks.  We have allowed our child to make decisions on breakfast, snacks and lunch.  We generally watch them plate and will allow discussion around options or trading items for those meals and snacks.  We still plate supper.

At times, the meals have become very rigid.  There was some weight loss the last 5 months and with everyone home now, we have been working on mastering behaviors and not restricting (that last bite is always the toughest).  So, we have allowed some rigidity as we know right now that they are doing everything possible to resist the behaviors until the behavior anxiety relaxes.  Supper is always varied. We toss in a restuarant meal ordered in once in awhile as these are a real challenge.  They always want a salad and we are trying to work through that.

It is more about letting them try to eat a snack or lunch away from us.  School became a tough place because while wr, meals were still getting pitched.  They very much want to go out to eat with their friends or have a snack out, but we have been told that they ate only to watch the weight drop.

This is the part that we are stuck on and have been so for about a year and a half.  I know that some people have to watch their children for years and we may very well be one of those families.  Just trying to figure out how to allow autonomy without loss and lying.

We are told that we are making everything harder because we are so controlling around the food.  Yet, we can't stop or else the weight is lost.  We tried that before as well.  We all want to move forward, we just don't know how.
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MKR
Sounds like you need some structure around achieving your goal. Either by way of a behaviour contract or a list of fear foods.

Your child and you can put together a contract stating Goals/ Rewards/ Consequences. We had that and the rewards were mainly more independence (with some "material" rewards like a mini holiday - pre-lockdown, of course) and the consequences were more supervision, like supervised lunch at school. We tackled eating, weight, exercise, table manners.

Some children also worked through the list of fear foods, with the help of a therapist, at this stage. Our therapist did not recommend it but nevertheless gave us a template list of foods with 3 columns next to each item. The columns were to record how the child feels about, say ice-cream: adamant No/ may try it/ has eaten it etc. The goal being to tick the "has eaten it" (without a problem) 3-5 times.

This is only a guidance. I wish you could have a specialist to support you and monitor the progress. It is much easier to get on with completing tasks knowing there will be a check at the weekly therapy session.

All the best,
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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melstevUK
Hi Sunny6,

I can't remember how old your child is but the ability to choose is probably the hardest thing to master, and if I am honest, it doesn't come until quite far into recovery.  To give an example, my d is fully recovered, with a baby, cooking properly for her family for the first time in her life - but she still finds going out to a restaurant and choosing from a menu stressful.  She and her fiance love eating out - but she still has to look at the menu first and make her choices at home because on the spot with so much choice, it is not a pleasure, it is a stressor.  So she is pragmatic and decides what she wants before she goes and then she enjoys her meal.

When ill, they will always choose to eat less than they need - they simply cannot make rational decisions around how much they need to maintain or put on weight and usually appetite is not functioning properly in these early stages to guide food and eating choices, so supervision from parents is generally needed for a long time.

The current rigidity around eating suggests that weight is too low again - that should recede a bit if you can get the weight up first.

In terms of eating out - why can you not find out where your child and friends are going, look at the menu on line and then help make the decision about what to eat before they get there?  The friends can report back if they managed or not.  Expecting your child to deal with going out and eating and making choices is too difficult.  If they go out and do not eat what you have agreed, then that is a sign that they need support and maybe you can fit that into some kind of contract.  MKR's ideas for rewards and consequences sounds like a good idea.  
It is a long and frustrating journey but it simply cannot be hurried.  The resistance is tough and I am no expert on refeeding but you seem to have managed very well until now.  So those are positives.  I hope you can see a bit more light soon and like Enn, I am glad that you are seeing glimpses of your child again.


Believe you can and you're halfway there.
Theodore Roosevelt.
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Enn

sunny6 wrote:

It is more about letting them try to eat a snack or lunch away from us.  School became a tough place because while wr, meals were still getting pitched.  They very much want to go out to eat with their friends or have a snack out, but we have been told that they ate only to watch the weight drop.

This is the part that we are stuck on and have been so for about a year and a half.  I know that some people have to watch their children for years and we may very well be one of those families.  Just trying to figure out how to allow autonomy without loss and lying.

We are told that we are making everything harder because we are so controlling around the food.  Yet, we can't stop or else the weight is lost.  We tried that before as well.  We all want to move forward, we just don't know how.


These statements suggest to me that your child is not ready to have any autonomy yet. My take is if they are fighting you or that you are being told that  controlling, well you have to be if they are throwing food out, then this may not be the time.
At two plus years in I thought d was
doing great.
I still packed her food etc, she was giving things away! She was throwing out her drinks at school, she was losing weight. The doctor and therapist told me her body was finding its set point and to let her have some freedom! I knew she was tossing I just could not prove it! Then I saw her dumping and she confessed. I was shattered but relieved and so I took full control again. 

One thing that shocked my d was when she said she wished to go to a prestigious university and I told her that if was still ill with ED then she was not going and that was that. The look on her face said it all. She then went to a new school and has a group of friends that eat and are just wonderful for her. I don’t what what motivated her, but she now is so much better and eats well. Still some redirection on my part but not much. I tell you this to let you know that it is back and forth and it does seem as if it will not end. I do feel your child is not ready and there may be other issues. I seem to recall some other mental health concerns? Maybe time and maturity are the ways through?  

Just my thoughts and I know hard you have been working to find the right road through this for your child and yourself. Not sure if anything I wrote helps so toss it if it does not fit. 

🌺

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
My D required support for many years, with eating supervised for the first 4 years of her illness (every meal and snack). I think I found it more frustrating than she did, it gave her the safety of knowing that she had to eat and had no choice (ie. not fighting ED). I just wanted her to try to choose or eat or ask for a meal. At this stage we decided things needed to change. She did want to head off to university (travelling daily from home) but there was no possibility of someone to supervise her, so she had to learn how to feed herself. It took a long time. The down side of this journey was that significant weight was lost, but it was not lost through clear restriction, exercise or dumping. It was lost she just did not realise how much she needed to eat. I was really keen to take over her feeding again but resistance from her and her ED experienced psychiatrist was against this. The thought went that she need to learn from the experience and learn how to stabilise and regain the weight. She did manage to stabilise, but it really took around 6 months before I felt she was not spiralling out of control. She has managed to feed herself since then, explore new foods, eat at any restaurant etc.. That is she did need me to step back to learn to do this. The more difficult part has been getting the lost weight back on. Five years have passed, and there has been some gain, 5kg from the lowest dip after she started feeding herself, but still not at the weight before she took over her own feeding. 

My thoughts are that we need to let them learn how to do this themselves and the test is not the loss but the ability to recover from it. My regret with my own D is that I did not have support for stepping back, at least briefly to stabilise things rather than allowing the losses that occurred. I still think however that letting her learn how to feed herself again was very important. 
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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sunny6
Thank you all for the great suggestions.  We have had multiple contracts drawn up over the last few years.  All of which get binned.  The only agreements our child wants to make are one lightening up rules that benefit what they want and will not allow any guidelines to be set around food.  We tried recently again when they wanted to negotiate house rules.

We did try to step back about 6 months ago.  Weight was lost and continued to be lost.  Food was being binned and they argued that that must be where their body wants to be.  We knew better as the weight was the lowest it had been in over a year.  We managed to get out of that and weight is now in range again and the range has moved with age.

They tell us that we are holding them back and that true support is letting them try and then helping when they need it.  They say because we aren't doing that, they can't recover.  We saw what happened when we did that.  Was mood better, yes.  Was weight lost, yes.  Would they attempt to increase what they were eating when we told them they were out of range and out of activities based on medical advice? No.  They were under guidance of a therapist and knew that they needed to gain, but yet in the end, couldn't do it for themselves.  

We tackle fear foods little by little.  We hit them hard for awhile early on and then as this has progresses and the little weight dips have happened, the resistance to eat these items has increasesed.  We have eaten a lot of desserts, but if given the choice, they will not eat them.  This was something they ate willingly as a child.  I have almost resolved myself that some items will never be eaten freely again.

It could still be that more time is needed.  I really want to make sure that we are not missing the next step to help our child progress.  There is no motivation to help drive the progress.  Car, university, or sports don't help.  It is all viewed as punishment and control because we won't do these things if they are not working on recovery.  

Recently, with all that has been going on, we are seeing good progress on behavior control.  Much better in fact.  So, we are rewarding where we can.  It is just this next step of trying to be independent for a snack.  They won't involve their friends in the accountability of what is eaten.  We have talked about food prior to going out, but then food is shared or not enough is eaten.  We think it is too much to ask teenage friends to hold our child accountable.  I know I couldn't grasp how to support someone at that age when I knew they had an eating disorder.

I know that letting go is going to be a hard spot for me after so many years of watching; however, I am just not sure when to try again.  
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Torie
I am wondering if your child needs more weight.  My d is among the many who needed more weight than anyone had expected.  After she had been well and truly weight restored (at this weight that was higher than anyone had expected) for a while, things started to get much better for her. xx

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

My son got sick in the summer of 2015 and we had little/no weight gain for 6/7 months. Then 2 years of slow but steady weight gain without going to school. In the two years since, I have served and supervised almost all meals. This is relatively easy because our boy is a home body and the habits built up over the two years at home held steady with meals at school. 

After about a year at home, he was well enough to start a little socialising but not well enough to eat out and about or with friends. My husband and I made the decision not to enforce the eating of the snack in favour of him spending time with friends, going to the cinema, etc I made up the calories at other meals but without discussing it with him. Would something similar work for your child?

Our son will still not take enough food, spread enough butter, etc if he is left to his own devices. He is very resistant to guidance and will never increase the food/butter at out request. So I still plate every meal, make all his packed lunches for him. I am hoping that when his growth has slowed down the abmount of food he naturally chooses will be enough for him. But I am nervous as he will be starting university in the autumn and he will need to be able to feed himself during the busy days. The plan is that he commutes from home so at least I will be hovering and probably still packing snacks etc. I do fear that, for him, it may be necessary to let him slip a little before he really comes to understand that it is not just mum fussing but a real and ever prestent condition that he needs to take into account. Scary stuff.

Anyway, if I find something that works with him, I will pass it on in case it works for you too! Otherwise, I think feeding them for a long time does ensure that they are protected from the medical consequences of malnutrition and the higher the weight the better for mental health even if it is not the ideal weight.

Warm wishes,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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Elinor
Our d (16) is at a similar stage. A couple of steps to independence which work for us.
I put out a bowl with yoghurt, jug of milk (amounts acceptable to me) and a banana for her to slice, plus the whole packet of weetbix (wheat biscuit cereal)She takes the 5 weetbix on her food plan out of the box and assembles her breakfast.
Before lockdown we managed snacks with friends by providing the snack, when it comes time to eat she sets up her phone focused on her mouth and we FaceTime- neither of us speak but she knows I’m watching 
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Enn
@sunny6 just thinking of you.
😊
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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sunny6
Thanks.  We are taking it one day at a time.  Trying to allow a little independence where we can, but still a lot of fighting and defiance.  We will take a weight this week and see what is going on.  They are working really hard, but the trust isn't there.  Any time we check in on them or monitor eating, there is a lot of anger.
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Enn
It is ok for them to be angry.  Food has to go in even if they are upset. You "just" have to tolerate it. Hopefully with time, and maturity that will ease.
💐
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
It is so hard to know when they are angry is it normal teen anger - stop checking up on me, or is it ED- I don't want to get caught. A fine line to walk, and unfortunately sometimes we have to be the bad guy. 
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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Torie
Enn wrote:
It is ok for them to be angry.  Food has to go in even if they are upset. You "just" have to tolerate it. Hopefully with time, and maturity that will ease.
💐

Well said. xx

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