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

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Cat
My d over the last couple of weeks appeared to be getting better, her mood was more even tempered, and she had been eating everything she needed to and was alot more positive. Over the weekend she became very emotional, and has been since then. 

When speaking to her she said that she wants to be back to normal, and that no one will ever trust her with what she eats again. She wants to get back to sport and to be able to make her own choices regarding which foods to eat and size of portions.

I don't totally trust her, of course I was very thrilled to hear that she wants to be well and back to normal, but I fear she is trying to gain our trust and then go back to the ED. 

Also I am sure I read somewhere that just before getting to WR, they appear worse for awhile, I am sure we must nearly be at WR, I wonder if this is what is happening?
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scaredmom
Hi Cat,
I may not be able to answer all right now but will get back later.
A couple of things: 
how is her weight compared to the ‘goal’( in quotes as some goals are not static) weight for WR?
Also this is very common for AN anyway,the withdrawal and upset.  I think it is wise to be wary and keep your eye on the prize regular eating etc..
i cannot recall how far you are on this journey  but I can tell you for us at 2 yrs down the road that I have not let up. My d has control only on what she eats from a predetermined set of meals and snacks. Now with activity she knows to eat more and I decide that.
For example she may have four cookies or a clif bar. 
Please look up extinction burst on the forum I will try to post when I have more time.
I think what is going on is normal for ED and you just have to keep going.
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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sandie
Hi Cat,
it is great to hear that your D has been making progress. We are about 6 months into refeeding and a few kgs from WR I think. My D also 15 has been saying very similar things for many weeks about wanting to be normal, get back to sports, eating what she likes and concernd that i will be watching what she eats for ever. I expectthat is probably typical for many kids with ED. And I can understand how she feels. It is very tough for them.

i think it is really important to stay firm and take things very very slowly. We have found if you give away any control at all, D wants to go 10 steps further. We have recently started to allow a little walking ( with additional energy agreed to mealplan) and will be seeing how this goes . There are lots of suggestions in different threads about how different carers have approached choice at different stages,eg some allow choice between different flvours of yoghurt or between 2 snacks. We have allowed more choice than this but that causes lots of problems.

About your wuestion about things getting worse, there is info on the forum about the so-called extinction burst which people describe that many families experience where ED gets worse close to WR. Use the search function to read up. I have been thinking that we might be seeing some of that also in recent weeks as things got quite bad ( but with more weight seem to have settled again). We went on a family day out which helped us all feel "practically" normal. I think ups and downs are to be expected and can be realky difficult to cope with. Anyway I am sure much wiser people will be along to give you more considred advice. Big hug.
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tina72
Cat wrote:

When speaking to her she said that she wants to be back to normal, and that no one will ever trust her with what she eats again. She wants to get back to sport and to be able to make her own choices regarding which foods to eat and size of portions.


I do not remember how often I heard these words. It is so easy to give in to it and to hope and believe they "got it" and that it is that easy to get back to normal again. It is not. What I learned from the old rabbits here is that you cannot do things too late with giving freedom back but one of the most common faults here is to do it too early (my hands up to).
So when she says something like that, just say "mmh, we will see when you are that state" or "I am sure you will get to that state but we need to do that slowly. You cannot do a marathon 2 weeks after breaking your leg."
And then change the subject.

When she is WR you can very slowly try to give her for example 2 options for a snack or ask her what taste the joghurt should have. It is a laddering process. You try something and then you see that it works and you can continue or you see that it does not work and you need to take that step back. Taking away a freedom again is very hard for them so wait until you are quite sure that she is ready. When you give AN one finger she is taking the whole hand. Some do call these phase the "dance", because she will go 2 steps forward, 1 step back and then the other way round. It is a bit a rollercoaster.

She can go back to sport when she is WR and when she is o.k. with adding more calories to do some sports. (If she were not over-exercising; if that is the case you might need to wait much longer before you can start that again). She can learn to make good choices and to plate herself again very slowly. She will not be able to cut back calories or meals for a long time. My d is in year 3 of recovery now and still eating 3 meals 2 snacks and we could not cut back anything up to now. Recovery from AN takes years.
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
This all sounds incredibly normal. Recovery is never a straight line with lots of ups and downs and then with normal teen angst - all parents want "control their teens lives". The only thing to do of course is to plough on. It may be extinction burst, at may just be teen distress, or she just wishes her life was back to normal. I think it goes back to those old staple strategies - acknowledge her distress, let her know that she will be able to return to independent eating when she is truly ready,  but that time is not now. 
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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scaredmom
Hi here is the extinction burst thread. 
Hope it helps a bit.
https://www.aroundthedinnertable.org/post/some-rather-long-musings-on-extinction-burst-relapse-and-recovery-6462360?highlight=extinction&pid=1288099228

Keep feeding. For what it is worth, I do not feel she can be given back much control ,not now. 
XXX
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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mamabear
Have you read the “ Stages and Timelines” thread? 

You are in early days still. She is 12 and has to grow and go through puberty etc. 

of course she feels this way, and it’s ok to acknowledge how hard it all is. 

But one of the the biggest mistakes parents make is giving kids too much independence with eating too quickly. I believe with all my soul that setting target weights too low ( and there is no target weight with a 12 year old) and handing back choice and independent eating too soon is why the revolving door exists in ED treatment. 

My d got sick at 10.5. It was a solid 2.5 years before she was ready/capable of any independence with eating. That’s pretty common especially in this age group. 
Persistent, consistent vigilance!
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Ellesmum
Couldn't agree more with mamabear, unfortunately carers are encouraged to do this and it's maddening to me. My CAMHs encourage this, it's no wonder people struggle so much to fully recover.  I have such a bee in my bonnet about it. 
Ellesmum
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tina72
Agree with you both, all patients I have seen struggling in the last 2 years here did that because of too much freedom at the wrong time.
Keep feeding. There is light at the end of the tunnel.
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kazi67
When my d was first diagnosed at 17, I cooked and served all her meals 
now she is 20 she is cooking and dishing her own meals 
I would say for you to continue to be in control for as long as possible 
until ALL ED behaviours are gone, moodiness etc

at 12?? I would definately not be letting her serve her own 
trust me ED can be VERY sneaky, you want to believe they are better so badly and ED can trick you as it did us 
I regret thinking my d was better to early 
stay in control while you can is my advise 
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Cat
scaredmom wrote:
Hi Cat,
I may not be able to answer all right now but will get back later.
A couple of things: 
how is her weight compared to the ‘goal’( in quotes as some goals are not static) weight for WR?
Also this is very common for AN anyway,the withdrawal and upset.  I think it is wise to be wary and keep your eye on the prize regular eating etc..
i cannot recall how far you are on this journey  but I can tell you for us at 2 yrs down the road that I have not let up. My d has control only on what she eats from a predetermined set of meals and snacks. Now with activity she knows to eat more and I decide that.
For example she may have four cookies or a clif bar. 
Please look up extinction burst on the forum I will try to post when I have more time.
I think what is going on is normal for ED and you just have to keep going.



Hi, thank you for your response, we are currently only at the beginning of our journey, she was diagnosed just under 2 months ago. I definitely need to be wary, I think maybe it has dawned on her that this diet is going to be for awhile and the ED is taking over wanting her to restrict again.

I don't know her WR, we have a meeting this week so will try to find out, she luckily didn't quite become underweight so I would think she is nearly there, but the ED has certainly got hold of her head.

It is good to know that all of this is normal, even though very hard to deal with and having a knock on affect with the whole family. 
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Cat
sandie wrote:
Hi Cat,
it is great to hear that your D has been making progress. We are about 6 months into refeeding and a few kgs from WR I think. My D also 15 has been saying very similar things for many weeks about wanting to be normal, get back to sports, eating what she likes and concernd that i will be watching what she eats for ever. I expectthat is probably typical for many kids with ED. And I can understand how she feels. It is very tough for them.

i think it is really important to stay firm and take things very very slowly. We have found if you give away any control at all, D wants to go 10 steps further. We have recently started to allow a little walking ( with additional energy agreed to mealplan) and will be seeing how this goes . There are lots of suggestions in different threads about how different carers have approached choice at different stages,eg some allow choice between different flvours of yoghurt or between 2 snacks. We have allowed more choice than this but that causes lots of problems.

About your wuestion about things getting worse, there is info on the forum about the so-called extinction burst which people describe that many families experience where ED gets worse close to WR. Use the search function to read up. I have been thinking that we might be seeing some of that also in recent weeks as things got quite bad ( but with more weight seem to have settled again). We went on a family day out which helped us all feel "practically" normal. I think ups and downs are to be expected and can be realky difficult to cope with. Anyway I am sure much wiser people will be along to give you more considred advice. Big hug.
Quote
Cat
sandie wrote:
Hi Cat,
it is great to hear that your D has been making progress. We are about 6 months into refeeding and a few kgs from WR I think. My D also 15 has been saying very similar things for many weeks about wanting to be normal, get back to sports, eating what she likes and concernd that i will be watching what she eats for ever. I expectthat is probably typical for many kids with ED. And I can understand how she feels. It is very tough for them.

i think it is really important to stay firm and take things very very slowly. We have found if you give away any control at all, D wants to go 10 steps further. We have recently started to allow a little walking ( with additional energy agreed to mealplan) and will be seeing how this goes . There are lots of suggestions in different threads about how different carers have approached choice at different stages,eg some allow choice between different flvours of yoghurt or between 2 snacks. We have allowed more choice than this but that causes lots of problems.

About your wuestion about things getting worse, there is info on the forum about the so-called extinction burst which people describe that many families experience where ED gets worse close to WR. Use the search function to read up. I have been thinking that we might be seeing some of that also in recent weeks as things got quite bad ( but with more weight seem to have settled again). We went on a family day out which helped us all feel "practically" normal. I think ups and downs are to be expected and can be realky difficult to cope with. Anyway I am sure much wiser people will be along to give you more considred advice. Big hug.




Hi Sandie

It sounds like we are very much in the same situation, it is so good to see that others are going through the same thing. From theses posts it is very clear that we must not give in to her wanting to take back control as yet. I have asked about choices of snacks and she really does struggle to make a decision, so not ready yet at all to make total meal choices.

I will look up the extinction burst on the forum, I am wondering if we are also experiencing this as she has been very low/emotional for the longest period so far. Very difficult trying to act normally, for all the family.
Big hugs back to you.
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Cat
kazi67 wrote:
When my d was first diagnosed at 17, I cooked and served all her meals 
now she is 20 she is cooking and dishing her own meals 
I would say for you to continue to be in control for as long as possible 
until ALL ED behaviours are gone, moodiness etc

at 12?? I would definately not be letting her serve her own 
trust me ED can be VERY sneaky, you want to believe they are better so badly and ED can trick you as it did us 
I regret thinking my d was better to early 
stay in control while you can is my advise 


Hi

So pleased to hear that your daughter is now cooking and dishing her own meals, it gives me hope.

My daughter is 15, so was making choices before this at school etc. I have realised in the last few days that this ED is very sneaky, it is hard to keep the two of them separate in my mind ( ED and D) and for the rest of the family to understand this.

We will stay strong and continue making her food choices.
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Cat
mamabear wrote:
Have you read the “ Stages and Timelines” thread? 

You are in early days still. She is 12 and has to grow and go through puberty etc. 

of course she feels this way, and it’s ok to acknowledge how hard it all is. 

But one of the the biggest mistakes parents make is giving kids too much independence with eating too quickly. I believe with all my soul that setting target weights too low ( and there is no target weight with a 12 year old) and handing back choice and independent eating too soon is why the revolving door exists in ED treatment. 

My d got sick at 10.5. It was a solid 2.5 years before she was ready/capable of any independence with eating. That’s pretty common especially in this age group. 


Hi

Thank you for your response, no I haven't read the 'Stages and Timelines' thread, have just tried to search for it but can't find it?
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kazi67
Hi Cat
when I couldn’t separate my d from the ED, I was worried we had lost her to her illness I only could see lying, anger, etc
i couldn’t even visit her in hospital, I felt defeated and hopeless not thinking my d would ever recover (felt guilt also as all the mistakes we made, thought it’s all my fault I just didn’t get it right and I felt AN had completely taken her over) that she was one of the ones to never get better 🙁 
dark days for us as all 

my therapist suggested I write down on one side of a page all my d lovely traits ie: caring, loving, thoughtful, honest etc and on the other side to write down all the ED behaviours 

this helped me very much to see my gorgeous d again 
and I was able to visit her in hospital ❤️
Maybe this could help xx
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toothfairy
Hi Cat, I will bump up the stages and timelines thread for you, it is worth reading through the entire thread including the links,
Best Wishes
Food is the medicine. Recovery is possible.
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