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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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Sheep
D just 16 diagnosed Aug 18 but has been restricting for at least 4 years. The 1st 6 weeks went okish after 10 days in hospital for refeeding (gaining c.500g per week). Then AN really kicked in & now will hardly eat at home and has lunch at CAMHS day unit 3 /4 days a week. Completely lost motivation and gets very depressed. At school 1 day a week which she really enjoys. Can't stand not being able to exercise. Questions: how to get someone to eat who just won't, how to motivate and other treatments if FBT isn't working?
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scaredmom

Hi Sheep, 
I welcome you to the club! I am so sorry you need to be here, though. It is a tough, horrible, scary illness. 
However there is hope and things do get better. 

The depression and lack of motivation is very common for our kids. They are unwell and their brains are so ill too. The medicine is the food. 
What are you struggling with? What does she eat? We can help you with suggestions to add in calories etc..

Do you use incentives like, when you eat this you will have your phone etc..? 

And sometimes  all of that still does not work, I know. Please look up deenl's thread on "Super resistors" There are many roads to Rome. And remember it does take awhile to find your own groove too. 

We really want to help you -so ask all the questions you have. 
I really hope you find the support and information you need. 

I am glad you are here. This is a kind and compassionate community of people who really have been there and back!

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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Kali
Dear Sheep,

I'm sorry your daughter is suffering and you along with her.

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Questions: how to get someone to eat who just won't, how to motivate and other treatments if FBT isn't working?


What I might suggest for right now would be for you to order some benecalorie and add it to her food. It has 350 calories in a relatively small footprint. You can't taste it in sauces or soups. It can be ordered online. You could also try reading Eva Musby's book and take a look at her website if you have not already. I found that she had the most practical advice about how to actually get a resistant child to eat. 

Another thing I could suggest is to start trying to get her to drink smoothies. It took us awhile because at first my d. would not. So I tried a laddered approach. The first smoothies I made were very heavy on fruit and she had just a small glass, and that made her think they were "healthy" (not that many calories). I made them with fresh strawberries and bananas and sometimes also added mango or other types of berries. As time went on I added more volume to her portion and also added full fat yoghurt, milk, ground almonds. And eventually I was able to add heavy cream, and then, vanilla ice cream.

She is not going to be motivated, this seems common in this stage of the illness. But parents have found that as refeeding continues and weight goes on they do notice improvements in state. As to your question about FBT, it doesn't work for everyone and sometimes a higher level of care is needed for awhile. But the principles are sound: serving 3 meals and 2-3 snacks and sitting and eating with your teen. Are you making her meals and eating them along with her at the moment? I found that even if my d. did not want to eat, when I served meal after meal and made her sit down at the table with me there was some progress. At one point around the holidays I wrapped a small gift for her each night and had it on the table with her dinner. It helped lighten the mood a little. But I was not able to refeed her at home at her most critically ill and she needed to be in an ED unit for 3 months to jumpstart remission.

Please ask all the questions you would like.

warmly,

Kali


Food=Love
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tina72
Hi sheep, a very warm welcome from Germany, great that you found us here.

"The 1st 6 weeks went okish after 10 days in hospital for refeeding (gaining c.500g per week). Then AN really kicked in & now will hardly eat at home and has lunch at CAMHS day unit 3 /4 days a week."

Do you have help with FBT? What was different in these first 6 weeks? Did she eat what you plated then?
Why do you think FBT is not working in your case?

It is quite normal to struggle with refeeding at the start and especially transition from IP to home is very difficult. We needed some weeks to make our 17 year old d eat what was on the meal plan. Do you have one?
Can you tell us what your problems are? Is she refusing complete meals or just special food?

"Completely lost motivation and gets very depressed."
She does not need to be motivated. Most ED patients are not at all motivated at the beginning. Many would prefer to die instead of eating.
Depression is very often a symptom of malnutrition and fades away slowly with weight gain. Is your d gaining weight at the moment? Do you need ideas what to cook and what to serve?

Come back to ask and to vent if needed, we have been in your shoes and we know what you are talking about.
Do not give up. Refeeding is the most difficult thing we ever did in our life but it is so worth it!
You can get your d back. Recovery is possible.

Tina72



Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
Welcome to the forum.

As Tina has already mentioned it is common, and in fact normal, for our kids not to be able to fight ED. The best part of FBT is that families are able to fight it for them when they are not able too. The same goes to wanting recovery. 

Feeding kids with ED is very counter-intuitive. We are no longer asking them if they like this or want something- doing that just increases stress and anxiety. Many parents here have found magic plate - choosing all meals and snacks as the best way forward. Taking away all choice. Ironically this can lead to less anxiety. These guides from Australia can be really good at helping to get started http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartA_Nov_2017.pdf and http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartB_Nov_2017..pdf

It can definitely take a few weeks to get FBT going. Where are you having problems, let us know and I am sure some people will be along with some ideas?
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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Mamaroo
Hi Sheep

Welcome from me as well. What you have experienced is very normal. My d's anxiety also got worse several months after IP. Initially she wasn't gaining visibly weight, because all the nourishment went into repairing her organs. As soon as the weight appeared around her tummy and face, it became very hard for her and she started to cut herself. No amount of reassurance that the weight would distribute would help her. In the end I just said that she is not fat, over and over again. 

Because she was ill for so long, restricting has become a strong habit for her and to get back into the habit of eat will take several months. It took us 8 months before my d was able to eat without incentives. Here are some examples of incentives we used: After every finished meal, she had a bit of playtime on the ipad and points towards itune cards. Every day when the meal plan was followed completely, I gave her bonus points to motivate her to complete the meal plan every day and not to think which meals she would restrict that day.

I had to change the way I parent, no more a democracy, but rather a benevolent dictatorship, like how our grandparents were parent. It took a while for me to change, couldn't be my children's friend any more and when they questioned any of my decisions I replied: "because I said so". I explained less and put in more boundaries (bed time, time bathing - it used to take forever etc.) These small things showed that I was taking authority back. In the same way I took authority when it came to meals and snacks. I would put up a weekly meal plan and stick to it, no negotiation and I kept it fairly consistent. I've attached a blank one for you. 

What do you do when she is not eating at home. We were told to present the meal/snack with the expectation that it would be eaten. She had 30 minutes to complete it. If after 30 minutes it wasn't done, she was sent to her room for bed rest with a book, no electronics. I went to do something else. Afterwards I presented the meal/snack again, rinse and repeat. It takes a very long time to get into the whole refeeding process. It took us 7 weeks post IP to get her to completely follow the meal plan at home and she lost all the weight she had gained in IP.

There really isn't any other option that works as well as FBT does, unfortunately. The hard work fall on us, the parents. I quickly realised that the hospital is not going to cure my child (or set a correct target weight for her for that matter) and that it was up to us (her family) to get her back to good health. The hospital gave us guidance and was the safety net under us and kept me sane (along with this forum), but we had to do the very, very hard work.

Sending you lots of hugs!!!!!


D became obsessed with exercise at age 9. 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. She is back to her old happy self and can eat anything put in front of her.
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Mamaroo
scaredmom wrote:

And sometimes  all of that still does not work, I know. Please look up deenl's thread on "Super resistors" There are many roads to Rome. And remember it does take awhile to find your own groove too.



Here is the thread:

https://www.aroundthedinnertable.org/post/the-super-resistors-when-lsuye-and-magic-plate-cause-total-shut-down-8122350?&trail=25

D became obsessed with exercise at age 9. 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. She is back to her old happy self and can eat anything put in front of her.
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Sheep
Thanks scaredmom, we are struggling with getting her to eat at home. She just sits at the table with H & me has a tiny amount then refuses any more. Haven't found any incentives that work.
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Sheep
Thanks Kali, D is supposed to have fortisip once per day (Sounds same as benecalorie). But is now refusing that. Have got Eva Musby's book. No luck with smoothies except when her brother was home a few weeks ago and made a really good one, so maybe when he is here at Xmas?
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Sheep
Thanks Mamaroo, this sounds very like my d. She plays/practises flute and sax so maybe those should be the incentives. Uneaten meals: usually try persuasion for 30 mins then give it to the dog or hens. Sounds like trying sanctions might work.
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Mamaroo
Sheep wrote:
Uneaten meals: usually try persuasion for 30 mins then give it to the dog or hens. Sounds like trying sanctions might work.


Keep the meals and present them again after she has spent 30 minutes lying on her bed, reading a book at the most. Ask her to take at least one bite. If she does, give her a small incentive, such as 10 minutes on her phone. At the next meal, require her to eat 2 bites. Give her 10 minutes on her phone again. Next meal, require her to have a 1/4 for 10 min phone time, then 1/2 for 10 minutes on the phone and when she is able to have the whole meal, give her 20 minutes on the phone.

Another thing I told my d, which helped was to say: "you could've been finished by now and be on your phone by now".

Here is Eva Musby's videos:







D became obsessed with exercise at age 9. 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. She is back to her old happy self and can eat anything put in front of her.
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tina72
Sheep wrote:
Thanks Mamaroo, this sounds very like my d. She plays/practises flute and sax so maybe those should be the incentives.


Try that. Does she have lessons with that? So you can ask her to eat before the lesson and if she refuses she cannot go? Can you take away the instruments and give them back after meals?

Sheep wrote:
Uneaten meals: usually try persuasion for 30 mins then give it to the dog or hens. Sounds like trying sanctions might work.


No food to the animals. AN would love that. Leave her alone for some time and then start a new try with the same plate. At the beginning it feels like you are trying to make her eat 24 hours a day and one meal leads directly into the other (and in fact it is often). But when she sees that you mean business and that it is impossible not to eat it because you will not leave the room without her having eaten it she will do it (and if it is only to get rid of you, no matter, most important thing is that she eats!).
Keep feeding. There is light at the end of the tunnel.
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Sheep
Hi Mamaroo, unfortunately she doesn't have a phone because she hasn't wanted one. But we will try and find something else even if it is just doing some of the jigsaw she is currently working on or some flute playing. Thanks for support xx
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Ronson
Hi - does she have I pad etc ? How does she keep in touch with friends. Unfortunately we initially had to use anything d got enjoyment from as leverage - it felt terrible - but I said as mamaroo did - you could have had phone/I pad/tv by now if you had started eating. We also allowed I pad etc at meals once eating had started. Flute could definitely be used as leverage. It is not an easy way to parent but once we got in the way of it d quickly (couple months) became compliant and will now eat all meals. Just imagine d is being held hostage and this is what you have to do to free her.
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Sheep
I said she could go into school today (after brief appointment at CAMHS to discuss/prescribe olanzapine). Reluctantly ate breakfast (full amount minus 3 spoons cereal) but won't have snack (fortisip, biscuits) so I didn't take her in. She said she wouldn't eat for rest of day and of course didn't. At supper time we talked about changing minds and accepting wrong decisions are made in the heat of the moment. She knew that but still couldn't let herself eat. So H & I had ours as usual and hers went in fridge. Hayho.
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Ronson
And what was the consequence of not eating - other than missed school ?
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Sheep
A difficult one: she was alone all afternoon cause H & I had to go out to work. I could have told her to go to bed I suppose, we just watched a bit of tv in evening. And generally felt gloomy!
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Ronson
Yep that’s difficult - in the early stages we were unable to leave d alone at all - I was worried for her state of mind tbh. I hate to say it but she may need someone there all the time to do early stages of re feeding - we were in the summer holidays so someone was at home all the time - wasn’t a fun summer holiday but it did break the back of the refeeding. From our experience we had to be ridiculously firm with d - so basically bed, no tv, phone etc until she ate.
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Ocras68
Sheep, is there any way you or your husband could take time off work? This is your daughter’s life you’re fighting for here and she needs constant supervision to make sure she eats. She is ill and simply cannot do it alone.
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scaredmom

Hi Sheep, 
I sense your frustration. Does she purge? Just asking. 

She is refusing to eat, her ED is really in control here, poor thing! I have a few questions.
 Is there any more intensive outpatient treatment available? Like a day program, where she would go for the day Monday to Friday and they feed her in the day to get the feeding going? So that most meals are served there and not just lunch, as you say above?
You say in your first post she cant stand not to exercise? Is she exercising when you and H are not at home?

I do not know your work circumstance either, but is there a way to take her with you so that she is not alone with her ED thoughts or purging or exercising in secret? Can any of you stop working for a while to get things moving in the right direction? I know it is so hard and there are so many things to organise and even then it is hard to know what will work or not until you try it.
 If she does not eat at home, is there a plan to take her to hospital for NG Feeds or consider admission for a longer time? 

From what you describe, do you think she needs to admitted again? She and you and H cannot continue this way. The team needs to step up to her illness, I feel and help support you to feed her. Some people here had a CAMHS support person come to the home for meal supervision sometimes, from what I recall? Is that an option? Does she eat with an audience? Like friends or family members (grandparents, cousins, aunts and uncles) Is there a romantic interest you can invite over for a few meals as incentive?

Taking her to a symphony or to hear a flautist that she likes? Could you buy her more music sheets for her flute? Would she like different tunes to practice? Or would she like records of her favourite music artists, classical or not?

I am just throwing out stuff, take what you need and leave the rest.
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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scaredmom

She is 16, when do they learn to drive where you are?

Would getting her driving license be an incentive? 
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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Mamaroo
Normally I would suggest a combination of the carrot and stick approach, however when she is really unmotivated I would suggest to use only carrots. I allowed my d to have friends over even of she is not eating. I would take (drag) her to parks or just to a cat cafe (something which do not require her to do too much exercise). Sometimes it is needed to drag them back to life to motivate them to eat again.  Have you read the super resistor thread by Deenl - it is very good. AN sufferers can be so hard on themselves, we call it emotional anorexia. When my d was ill, she would not get clothes from an ordinary shop and preferred to buy clothes at the salvos (second hand shop). (Today she would only buy branded clothing, how she has changed, [smile]). 

Here are two old threads on it:

https://www.aroundthedinnertable.org/post/emotional-anorexia-5978862?&trail=25#gsc.tab=0


https://www.aroundthedinnertable.org/post/the-origins-of-emotional-anorexia-6123835?pid=1276084940#gsc.tab=0


Do you have a care coordinator at CAMHS? Can you contact them to ask for suggestions, it seems that she might need higher care if the situation can't be turned around.
D became obsessed with exercise at age 9. 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. She is back to her old happy self and can eat anything put in front of her.
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Sheep
D has lost 1.3kg over last 10 days, prescribed olanzapine (2nd one taken this evening). Am I right in thinking she may be referred to tier 4 inpatient next or what other options? Has just about managed to eat at the day centre this week but very little at home. I'm really scared about this up coming Xmas week.
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Sheep
How long can D be "allowed" to go with only absolute minimum of food? (Current weight 31.1 height 156cm).
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scaredmom

Sheep, 
I do think she may need a higher level of care from what you post. Are there plans if she does not eat well at home to take her to the hospital, NG tubes feeds at hospital for missed meals or for you to do at home?

I am sorry this is not going so smoothly, it never really  does, unfortunately. Olanzapine has been studied in ED and it is a useful med. One side effect is weight gain so that is nice. It can help their thoughts, but does not make them eat, but can help the anxiety. 

I do hope it helps her and you. 
I am praying things go better with the meds. 
All the best,
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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