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

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sunny6
I need a little help.  We have tried the LSUYE approach and when they fall out of range, they are under higher supervision and miss certain activities.  We have discussed outcomes to refusals meaning trips to the hospital.  Through all of this, the message has been your body cannot function correctly without food and you need extra support right now and we are here to help.  We also have said, if you don't do x then y doesn't happen.

It has been suggested that we switch our thinking and say that the outcomes are the treatment plan to make everything feel less like a consequence as consequences frustrate our child and trigger the combativeness we have seen.

Any suggestions?  I really don't know what to say.  If I see they have purged, snack is bigger to adjust. They ask why and I tell them it is an adjustment that is needed due to purging.  And now it is a consequence in their mind rather than an adjustment of the meal plan.

Thanks
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workingthrough
Could you possibly offer a reward of sorts that he’s/she’s working towards as he/she meets full meals and keeps them in? 

We did LSUYE and literally just ate all day.every day. We lost video games, phones, etc. but for s (and this might not be recommended), we did a chart/point system for eating full meals, fear foods, no exercise, etc. For him, it worked wonderfully well and was more positive. It only took us a few weeks-month to get on track a bit. He seemed like a toddler in that stage. With time/getting eating going + weight added, he started coming out of the fog, we pulled back on the chart and just expected full meals, etc. It did work to get us out of a rocky place.

We also held (and still do) higher treatment as the next step if we can’t help at home. Very similar to you, we phrased it as ‘we need more help.’ Not to threaten, but more as in, ‘we love you so much, we’re doing all we can, we see you’re suffering and we need help to know how to help more.’ 

We tried to keep discussions at a minimum: amounts of food, changes in meals, etc. are/were always “it’s what you need.” S got/gets caught up in exchanges and “too much”, etc. I feel like we’re constantly saying “trust us, eat it, it’s what you need.”

I don’t know your full story - I’ll go back and read when I have a little more time, but I think a lot of the combativeness is when they’re so deep in it all. As you get those calories in it will lessen. I’m not sure there are any magic fixes in the beginning. It’s so, so hard. Is your s/d restricting and purging? How are meals going? Are you able to get full things in? I’m sure thinking of you!! It’s so hard!
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sunny6
Thanks for the insight.  We have been working at this for almost 2 years with wr being just over a year ago.  We have been trying to work on phase 2 for the last year, but every time we give control there is restriction or purging.  Just had a big relapse a few weeks ago and caught it quickly (within a week due to weekly checks) but the illness is back to the level it was when we first started refeeding.  We have been encouraged to return to as much of a normal life as possible but there are a lot of things we still do to try to manage the behaviors as we continue to try to give back control.  Weight has been right on historical bmi as they haven't grown an inch in two years.
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scaredmom
I would suggest not even think about giving any control back for a long time tbh.
Do you feel when you are in control fully things are better? If so I would continue for a very long time. My d at 1.5 yeast WR still needs me to support most meals ie plating and she has little say except for handful of predetermined ‘good’ snacks 
you know your child the best and you are in the thick of things. I would go with your gut and hope some of the suggestions here are something to try out and see how they go.
i tend to think now with EDs there is no straight line and finish line for each stage.
Have you read mamabear ‘s thread on stages and timelines? It helped me see that just because d got WR there were more issues to tackle.

There seems to be a dance , a to and fro movement for the child and circumstances and that we have to adjust what  we do when things pop up. So as you say when you give back some control, it goes backwards a bit, so that is why i think you hold steady and no control to child for awhile. Also with brain maturation normally even without ED, your child may need more support for longer until a time they are able. I know mine does.
sending support 
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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scaredmom
Have you read the super resistor thread by deenl? I will post later. But there are so many ways to do this. There is no one way at all. We all have to coach our own way and figure it out based on our family dynamics and the kids temperament.
I thing of FBT meaning ‘ finding the best way through’ whatever that looks like for you. 
If you could give an example of what is happening it may be easier to brainstorm.
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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debra18
I also saw with my daughter that the way towards recovery is keeping her involved in school, activities, etc and saying I would take something away backfired because she needs the distraction to move forward. 
I agree with not giving control back. You may have to challenge the professionals on this.
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sandie
@sunny6 I struggle with communication about consequenes as well. It is a very difficult balance. I clearly say that if you don't follow meal- plan you will not go to school. It works but D hates it and we have very confrontational atmosphere at home at the moment which is too stressful for everyone.
For the last few months, she has only needed to stay off school once but it is a different story during holiday time or when there is no school next day- eg day off today- she didn't have afternoon snack yesterday. I agree with@debra18 that activities/ building a life really important and we need do a bit more of that here. I was wondering about value of contract at our stage ( 7 months into refeeding- nearing weight restoration inch'allah). There are some threads about this somewhere...
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tina72
I do not really know if I hit what you asked for but:
1) It is a question how you say things. You can say "if you do not finish breakfast you cannot go to school". That sounds like punishment. But you can also say it positive: "when you finished breakfast you ca directly go to school". Do you know what I mean?
2) I do not see consequences as punishment. If you park your car where it is not allowed and get a ticket that is consequence. If your d was 2 and want to play besindes the highway you would ask her to play in the garden and you would see that not as punishment. Things we do or do not have consequences. That is a rule they need to learn for life I think.
Keep feeding. There is light at the end of the tunnel.
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scaredmom
debra18 wrote:
I also saw with my daughter that the way towards recovery is keeping her involved in school, activities, etc and saying I would take something away backfired because she needs the distraction to move forward. 
I agree with not giving control back.


THIS👆I think is so important,and works with your child debra18 and likely others are doing this too, but did not recognize it. I think that was/is me too. Didn’t you give her piano lessons as well? Finding something they love to do etc.. is  another way to keep them motivated and engaged.  Keeping them happy outside of the eating or ED gives them something to live for. Building a life outside of ED, while still dealing with Ed. 
Love it!!
i am getting so many ideas about how I want to tackle a few things moving forward.
😊
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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debra18
Yes she is taking piano lessons and for her this is therapy as she never went to a therapist. She learned herself to use the piano as a distraction to stop ED behaviors. And as I wrote on another thread when I threatened to take away piano I think it was a mistake.  Yes Tina you can change the way you word things. If I want my kids to clean their room I don't tell them they won't be able to play if they don't clean their room . I say "when you clean your room, you can go out to play." It is understood that they will clean their room so I never have to give the consequence of not allowing them to do something. I hope this makes sense.
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scaredmom
I think it is the subtle nuance of the meaning of consequences vs incentives (words and interpretation, taking into account the feelings ie emotional intelligence versus intellectual intelligence). I think finding the internal motivators can really open up some wonderful helpful ways to challenge behaviours and move forward in a positive way. It may look the same on the outside when we see the outcomes, but the WAY it is achieved is wholly different. I hope that makes sense.
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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scaredmom
sunny6, 
This is the thread I was referring to above about super resisters. I do hope there is something that helps. 

https://www.aroundthedinnertable.org/post/the-super-resistors-when-lsuye-and-magic-plate-cause-total-shut-down-8122350?highlight=super&pid=1308670048
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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toothfairy
Hi
Here is a book well worth reading
https://www.amazon.com/When-Your-Teen-Eating-Disorder/dp/1684030439
Food is the medicine. Recovery is possible.
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tina72
debra18 wrote:
Yes she is taking piano lessons and for her this is therapy as she never went to a therapist. She learned herself to use the piano as a distraction to stop ED behaviors. And as I wrote on another thread when I threatened to take away piano I think it was a mistake.  Yes Tina you can change the way you word things. If I want my kids to clean their room I don't tell them they won't be able to play if they don't clean their room . I say "when you clean your room, you can go out to play." It is understood that they will clean their room so I never have to give the consequence of not allowing them to do something. I hope this makes sense.


That makes sense totally, debra18. With that sentence you show in addition that you will expect them to clean their room and that this is not a question to say no to 🙂. That was important with meals here, too. When we found out how to show her we expect her to eat that and it is not a question of yes or no but only a question of time, then she could eat. Fake it until you make it.

We also used a lot of positive leverage to make the refeeding not feel punishment. My d was keen on driving lessons. Others were keen on cosmetics or video games. In most cases after the first weeks of refeeding there is something they want to have or to do that you can use as leverage.
Keep feeding. There is light at the end of the tunnel.
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sunny6
I think where we struggle the most is when they refuse to eat or drink to the point that they can't participate because of health concerns.  A month ago there was a very quick and severe relapse.  Severe restriction on eating and drinking.  We were climbing out and just had another 4 days of refusing to drink enough.  There is no longer the ability to do any activities because we need to focus on getting enough nourishment or go to the hospital.  This for sure feels like a punishment and using statements of you can do this when this is complete doesn't help when the incentive activity is days away and they are currently completely shut down with refusal to do anything.

Any suggestions?
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debra18
I found that I had to do things in the reverse way. Offer the incentive/ motivation along with the drink and food as a distraction. And random rewards as a motivation for recovery. Example:" I found this paint project in the store and thought of you." 
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Mamaroo
sunny6 wrote:
This for sure feels like a punishment and using statements of you can do this when this is complete doesn't help when the incentive activity is days away and they are currently completely shut down with refusal to do anything.


Incentives which happen in a couple of days are too far into the future to be helpful. We used immediate incentives, such as you can play on the iPad when your  snack or meal is done. Your d sounds still very much in the grip of ED, so focus on things they could do that day. Activities such as video games or crafts are good ideas as it doesn't use a lot of energy. I gave my d points for each meal or snack finished (along with iPad time) and bonus points for completing the whole meal plan for the day (I gave her extra bonus points for completing the whole meal plan for the week). She used the points to buy iTunes cards.
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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scaredmom
I am not sure you can really do this without it feeling like a punishment from what you have noted above, no matter how you frame it. I think I recall that your child is 16 and to take away things they like has to be done to get the nutrition into them somehow. 
It is like chemo, it is going to be awful, like a punishment and they know that the bad feelings, and side effects are going to happen, in the short term, but the goal is the long term benefits and a life without ED. I am not sure if seeing it that way helps you and may be a way to frame it for your child. But if they are so ill they likely have anosognosia. So no matter what you say and how you frame it, there may be no buy in. Very challenging and I truly don't know how to advise or what to suggest.

There has been some discussion about temperament based therapy and working within the child's own personality, on the forum. Now that is structured for adults. Does your child have any insight and is it worth tapping into the the "short term pain for long term gain" or maybe none of that would work? I do recall a time for my d, nothing was seen as a reward or incentive. We had to shut everything down for refeeding and it was not pretty. She did not want to play games, had enough in the hospital and they "were boring", we could not do video games as my D would not sit at all, we took away her phone and she just moaned and moaned and she said " I don't have anything to live for anyway , so why eat?" If she could not take a walk (that ended up as a sprint) she just cried and it was heartbreaking for sure. And so we  pushed on, but my child was only 11-12 at the time of diagnosis, so much different  issues than for an older teen.

I am just throwing out some different ideas, as I agree that sometimes no matter how you say it or frame it, it is still seen as "punishment" at some level by the child.
Sorry, I hope you find a way through this difficult time
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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scaredmom
I did find this on the forum:

https://www.aroundthedinnertable.org/post/leverage-versus-incentive-for-young-adults-adults-7352722?highlight=incentive&trail=25

https://www.aroundthedinnertable.org/post/punishment-vs-it-just-looks-like-punishment-7284527?highlight=punishment&pid=1286608202
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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sk8r31
Lots of great thoughts and ideas here...it really can be trying and tricky to find the way forward.  One other idea to throw out there...does your d enjoy animals?  Are you willing or able to get a pet?  For some, having the responsibility of a cat, dog or another small animal can be soothing as well as motivating.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Mamaroo
Great idea sk8r31, we also got our d a pet mouse and the little fellow was a great distraction.
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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sunny6
Yes, we have several including their own pet. They have pretty much shut everything out except for their friends.
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