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njh1919

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New to FBT therapy. What do we do when our daughter refuses the meal we made & instead makes her own? Or when she refuses food & leaves the room?
OneToughMomma

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Reply with quote  #2 
Congratulations, njh1919, on asking the million dollar question! And welcome to ADTD.

It's pretty much the most important question, the most challenging aspect of FBT. 

And the answer is not the same for every family, and we know nothing about yours, so how about we throw a few ideas out there and you see what works for your d?

My d was 16.5-ish during the worst of refeeding, but independent enough that we went with strategies that often work with slightly older kids.

It was really hard to keep her out of the kitchen.  I have heard with younger kids (don't remember which warrior mum did this) that a line of tape on the floor across the kitchen doorway was a visual reminder.  That would have been less than useless in our house.  Our d didn't usually want to prepare her own food, rather she wanted to watch it being prepared.  We just refused to let her in the kitchen.  If she came in while I was cooking I just stopped everything and leaned on the counter.  I waited until she left.

Food was eaten at the table, and h and I would sit either side and 'hem her in' her seat. 

But sometimes we couldn't prevent her from getting up.  In those cases I would follow her with a plate of food, saying over and over that she needed to eat it.  I sat on her bed and kept repeating.  She would throw the plate sometimes.  So I'd replace and repeat.  Eventually she ate just to shut me up, I'm sure.  There was no mechanism for her to lock us out of her room or the bathroom.  We would have disabled that or removed the door if necessary. 

Sometimes we would take her phone off her if she refused to eat.  We took her laptop at times, too.

Also, there was no going ANYWHERE if she hadn't eaten.  No school, no nothing.  (We delayed her getting her driver's license because she really was too ill to drive, and it helped lessen the times she ran away.)  Had she already earned her DL, we would have taken the keys from her.  You could say to your d something like, 'You haven't had enough nutrition to go to XX. I'll take you as soon as you've eaten enough.'

I have to say that my d got agitated and confrontational at times.  Violent, even.  We did not tolerate violence, and called for help when necessary.  In the end, though, it is my house, and no kid of mine is allowed to starve under my care.  We tried to remain calm and consistent, and as her weight went up her anxiety lessened and the behaviours dropped.

It can be so hard to set boundaries when our kids are so stressed and anxious.  I was afraid my d would never love me after our experiences.  It might give you comfort to know that recovery is possible, and your relationship will recover, too.  My d is almost 20, living away for university, and has no eating/weight problems.  She's like any other almost-adult I've ever heard about.  She does love us.

Please keep in touch.  Ask us specific questions, and tell us what hasn't worked for you.  We'd love to help.

xoOTM









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D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
njh1919

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Reply with quote  #3 
Thankyou so much for your reply OneToughMomma! We are only at the beginning of FBT with our almost 16 year old & it just seems impossible! She keeps leaving the table & refusing to finish what we give her. We have followed her but she still refuses.
We have also had to reduce her sport which resulted in suicidal threats 😞
Foodsupport_AUS

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Reply with quote  #4 
Welcome njh1919  Getting things moving with re-feeding is tough. ED will try and do anything to divert you from your task of feeding her. This includes making threats of self harm, of running away, of preferring to be anywhere else. This is not parenting for the meek and mild. Having a clear plan of what you are going to do as a team, and making it clear to D what your expectations are well ahead of things gives you the best chance of success. She will not like it but many kids once they have got started are somewhat relieved that someone is taking responsibility for feeding them, they will almost never say it till much later. 

Have you read our Hall of Fame?  It has some great tips and ideas for getting started on re-feeding and helping you to take charge. 

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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.
iHateED

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Reply with quote  #5 
Welcome to the group, though so sorry that you need to be here!  You will find lots of useful information in these threads so read around as much as you can.  OneToughMomma has given you some great advice.  If you want to share a little bit more about your story, maybe others will have more specific answers for you.  You say you are new to FBT so what does that mean for your family?  Did your D attend any type of treatment program?  What support do you have currently?  My D was also 16 at the time we started FBT.  She was a junior in HS.  We had a really hard time but just kept at it!  We had food thrown at us and at the walls on a daily basis.  We laid out some rules from the beginning.  She must eat breakfast that I plate and then she could go to school.  She came out to my car for lunch and when she was finished she could return to school.  I am in the US so we put our D on a medical 504 plan which was very helpful. 

The best answer I can give to your specific question is to use any leverage that you currently have to get her to eat.  Try to frame it in a positive way such as "when you are finished with your dinner, you can have your phone/ipad." 

Hang in there and please ask lots of questions!
OneToughMomma

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Reply with quote  #6 
HI, njh1919,

May I ask for some details? 

When you say you have followed her but she still refuses, what does that look like?  Where does she go?  What do you say?  How long do you persist?

Regarding sport, I've got a suggestion.  I'd say a kid who can't eat adequately should not be participating in sport.  At the very least, you could use sport as a reward for eating.  "You can do your sport after 24 hours of good eating. Otherwise it's just not safe."

I believe one trick to making FBT work is just bloody-minded stubbornness on the part of the carer.

The harsh reality is that either your d eats or she gets/stays sick.  She's not going to eat on her own.  So you have to do it for her until she can do it herself.  And it will only get harder as she gets older.

Sending a big cyber hug,

xoOTM

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D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
Torie

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Reply with quote  #7 
Quote:
Originally Posted by OneToughMomma
I believe one trick to making FBT work is just bloody-minded stubbornness on the part of the carer.


So true!!!

You have to be even more stubborn than ED, and just as single-minded in obsessing about meals.

It's a tall order.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
njh1919

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Reply with quote  #8 
Thankyou so much for all the replies. Im so pleased I found this forum! Our daughter says she is depressed and threatens suicide when we try to force her to eat. She will throw out what I have made then make herself something.
She has not had an inhouse treatment, we are doing FBT as the initial recommended therapy and it is soooo hard!
She is so stubborn and wants to negotiate all the time.
When we are hard on her in terms of no driving lessons/sport etc until you eat then she becomes distraught which is incredibly sad, then the suicide threats.
Onetoughmomma - she goes to her room. We follow & stay there but all she does is go on about her awful life & killing herself.
K63

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Reply with quote  #9 
Hi njh1919, welcome to the forum, it's a really tough job refeeding . Just wondering if your daughter is on any medications to help her through this terrible illness. Does she need a higher level of care if she is suicidal. My d also left the table many times and refused to eat I said she would not be able to go to school go with friends if she didn't eat she would not have a life is she didn't eat , at times she said she didn't care. I watched Eva Musby s video how to teach your child to eat you will get it up if you google it I found it so helpful it made me aware of the torture she was going through and he led me remain calm and patient. Having a calm atmosphere for meals is so important. Get some breaks away a walk or coffee with friends it's a long slow process and you need to look after yourself too.
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
njh1919

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Reply with quote  #10 
Hi K63, no she isn't on any meds - the therapist said it is the ED causing the threats etc. she suggested we can call Mental Health services if we are concerned which is actually not very helpful!
She is so sad, it is incredibly heartbreaking.
I will look at Eva Musby - thankyou 😊
berry75

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Reply with quote  #11 
Hello so glad you found this forum.It was and still is a major source of support and advice in this long journey.My daughter was diagnosed with ed nearly two years ago and when we first started refeeding threatned to kill her self on a regular basis.She would often leave the table,during dinner and like other parents i would follow her with the plate.Our main philosophy was nothing happens without full nutrition.Almost a mantra i would say to enforce eating for her and keep myself calm.I would just keep saying,please pick up your fork,please start to eat.Food is medicine.I am the expert on this and you need to eat.I would say these things over and over again.I agree you need to be more stuborn than the illness.I would say that ed was not welcome in our house.It wasnt invited in and I will beat it with you.I would tell her I loved even when she said how much she hated me.I would tell her I would never give up or back down.This is such a vile illness it steals so much.Keep going.Come to this forum as much as you need for advice or even just to vent.There is always a sympathetic ear.
Torie

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Reply with quote  #12 
Hi njh - It's heartbreaking to hear your kid say they don't want to live.  Just heartbreaking.

You have probably already done this, but it's prudent to lock up all the sharps and meds and toxic household products when they are talking suicide.  Many of us here (raises hand) have gone through this and come out the other side.

Eva's video was a huge help to me:



Keep swimming. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
njh1919

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Reply with quote  #13 
Thankyou all for replying! Did your daughters acknowledge the ED? My daughter is adament she doesn't have a problem.
hopefulmama

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Reply with quote  #14 
Njh - 

I am so sorry for what you are going through, but I'm so glad you found the forum so early in your journey.  You will get great information, advice and support here.

Almost 5 years ago, I was right where you are.  My daughter was 17.  We did not do FBT because I didn't know anything about it at the time. My daughter is now doing great and has been ED free for several years.  Suicidal ideations and threats, depression and anxiety were HUGE issues for us.  My daughter would lie on the floor of her room for days at a time wanting to die. She missed most of the last two years of high school because of her ED and depression. Was your daughter depressed before the ED?  Mine was not.  The depression was really a symptom of the ED. Once we restored her weight (no easy task), the depression and suicidality dissipated. Most experts believe that traditional anti-depressants are not very helpful at this stage.  However, your d might really benefit from a medication that will calm her while you restore her weight. I was afraid of meds and my daughter didn't want to take them either, but once I realized it was a temporary thing to get us to the goal of restoring her weight, I was OK with them. Zyprexa (olanzapine) really helped calm her so that she could eat.  Once she was weight restored, we switched to an anti-depressant.  My daughter took that for a year or so and has now been medication free for the past 3+ years.

I am by nature rather anxious and reactive (wonder where my daughter gets it) and I often felt that I was the most ill-qualified parent ever to have a daughter with an ED.  However, many of the resources I gained from this forum helped me change. (Eva Musby is my idol.) It took my awhile, but I finally realized that in order for my daughter to recover, she was going to have to suffer and face the anxiety and torture of eating and gaining weight.  Chances are your daughter will have to gain more than you think to achieve recovery. My daughter was a pre-professional dancer.  She had to give it up because of ED.  I know she still misses it, but she has gone on to develop other passions.  

As for insight, or admitting they have an ED, it is VERY normal at the stage you are for your d to not think she is sick.  In fact, it is actually a symptom of the illness.  That is why parental involvement is key to right the ship.  They can't do it on their own, because they can't see there is a problem.  Your daughter will eventually need insight to stay in recovery, but that will come later.  This blog by a leading FBT therapist in the US about the part insight needs to play really helped me.

http://www.blog.drsarahravin.com/eating-disorders/after-weight-restoration-the-role-of-insight/

You are using the most evidence based treatment available.  It will be unimaginably hard, but your daughter can recover and go on to lead a great life My daughter will graduate from university next month and her future is bright. I never could have hoped for even half of it when I was where you are. 







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Enjoying my 21 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
Foodsupport_AUS

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Reply with quote  #15 
Unfortunately yes, it is common early on for those with eating disorders to deny there is a problem, or if they acknowledge it to markedly down play the issue. 
There is no doubt this is really tough parenting, with a very steep learning curve. Has your support team offered you phone and contact details for mental health services?

Dealing with ED's can be frightening. Suicidality and suicide attempts are real threats in this illness. If you feel unsure about your D and her planning then getting her assessed is essential. The threat of suicide can be a reason for initial treatment in hospital rather than at home for safety reasons. 

That being said it is common for ED to say anything to avoid eating and to try to take control of the situation. So insisting that you know what she needs to eat, acknowledging that she is finding it hard but that she still has to do it are all still part of the plan. 

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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.
iHateED

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Reply with quote  #16 
My then 16 year old D would yell and scream at us and tell us she didn't have a problem, that we were the problem.  She told us she hated us, couldn't wait to move out of our house and cried endlessly about how depressed she was.  She said she would never trust us again.   She is in a good recovery now and thankfully she doesn't remember most of the bad days!

At this stage, you have two goals - to keep her eating and to keep her safe from herself.  Distract as much as possible, offer back rubs, watch movies or TV, play board games, or craft projects.   Try not to let her be alone with  her thoughts for too long and really monitor her phone or computer use to make sure she is not going on any pro ED websites.  Maybe visit and animal shelter and help out once a week, or other volunteer opportunity in your area.

Hang in there!
njh1919

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Reply with quote  #17 
Thanks again for the advice. So reassuring to hear from others whose children have come through the other side. I feel like her suicidal threats are just threats to scare us however we are concerned she may do something silly and hurt herself unintentionally. We have the numbers to call if need be.
njh1919

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Reply with quote  #18 
We arenow a few weeks in to refeeding and we arent getting much weight gain (100gms last week). Everytime we push her to eat more, we get hit with suicide threats and how depressed she is which is heartbreaking. She hates us and wants to move out (she is 16). She isnt sleeping properly because she says she is thinking about all the things we made her eat and how horrible her life is.
We are at our wits end. This is so hard and we just dont know what to do. We are in a living hell as Im sure you've all felt!
Foodsupport_AUS

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Reply with quote  #19 
Unfortunately it does sound normal. You are doing great, you are getting her eating and putting up a fight against the storm. 

Given her refusal is about eating more, what can you do to pack more into the food she is eating? Things such as almond meal, canola oil, butter, or even adding things benecalorie may be useful. I would also work hard to make it very unclear as to how much she is eating, change up plate, bowl and cup sizes. She is terrified of gaining weight, because that is her illness, but the only way for her to get better is for her to gain weight. Keep on fighting. If things are not improving over the next few weeks have you looked at a higher level of care and options?


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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.
njh1919

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Reply with quote  #20 
Thanks Foodsupport AUS. Unfortunately she is not underweight enough for the hospital to accept her. We could go private but the therapist doesn't recommend it.
I know this is all related to the illness but it's breaking my heart. She sobs and sobs and says her life isn't worth living.
Torie

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Reply with quote  #21 
Ugh,  I hate this vile illness.

Suicide threats do need to be taken seriously and evaluated, as I'm sure you know.

Other than that, all you can do is push on through the misery because the only way out is through.  There used to be a great quote at the top of this page that said, "When you're going through hell, keep going."  

You sure as heck don't want to stay there any longer than necessary.

FoodSupport summarized your options nicely:

1) More food
2) Denser food
3) Higher level of care.

It sucks, for sure.  Wish we had a magic wand.

Please remember that we're with you in spirit. xx

-Torie

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

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Reply with quote  #22 
Quote:
We could go private but the therapist doesn't recommend it


This is common. I think it is important to regularly evaluate how useful any therapist is. If you are not seeing changes and progress, sometimes you need to change tack. The trick is working out when is the right time. One of the important parts of doing FBT is to work out when it is not working. Not sure where you are, but there are a number of intensive programs around that some have tried to get FBT working better. Hospitalisation and inpatient is also an option depending on where you are, but the point is you can't keep on going not getting anywhere. 

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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.
njh1919

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Reply with quote  #23 
Hi foodsupport aus. We are in NZ. The therapist didn't recommend inhouse treatment as they mix with other ED patients & learn tricks like purging etc (she doesnt currently purge).
But I feel like we might need tolook in to it if we dont getany traction with FBT soon. Although what happens in hospital/private? How do they get them to eat??
Foodsupport_AUS

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Reply with quote  #24 
There is no doubt that inpatient treatment of any type does have draw backs. Separation from family, friends, and being in contact with others who have eating disorders. The latter can be a mixed thing. There can be support from some in care who understand the distress, but there is also the opportunity to learn new tricks and the temptation/risk of new behaviours that were not there before. 

This all then shows the need to keep on pushing through and trying to get things to work at home, but if she is not improving at some point you do need to make the choice. 

How do they get them to eat? It varies with each unit. When my D was inpatient - all meals were fully supervised, care taken to make sure there was no wiping, spitting, hiding, cheeking etc. of food. If a meal could not be 100% completed in the time allotted time period an equivalent caloric drink (Fortisip) was given. This needed to be completed within 15 min. If the Fortisip was not completed any remaining Fortisip was placed down a NG tube. The tube stayed in until all meals and snacks were fully completed (no supplements) for 48 hours. All bathroom visits were supervised (D had to relearn flushing the toilet). There was a compulsory rest period on the bed after every meal. No bathroom for at least an hour after any meal or snack. Weigh ins twice a week in a gown only, empty bladder, first thing in the morning. All jugs/drinking receptacles removed for 10 hours prior to weigh in. If less than 1kg gain per week the meal plan was increased by 500cal per day. They gained weight because there was absolutely no choice. 

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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.
Sotired

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Reply with quote  #25 
Hi njh,
We are also in NZ,in Auckland.you have the option of getting your d into hospital via the child and family unit.our d was first admitted there for suicidal ideation with anorexia as well.like you we found the threats very hard to cope with and in the end made the choice to put d in the CFU.what we didn't understand at the time was that if we had left her there(we took her out after 24hours because she was distressed and still not eating)we would have been better off as then she would have been transferred to the fifth floor and fed via NG tube.it took us two admissions to learn that.
If your d is very suicidal they will put her in the locked ward at CFU and if she doesn't eat they will still transfer her up,but under 24hours watch.
If you are still at marinoto please be aware that they make hospital sound much worse than it is and for a percentage of our kids hospital has to be part of the plan.criteria admission is not just on weight-my d was admitted at 48.5kg ,but her obs were unstable.make sure any obs taken anywhere are done orthostatically.this means lying to standing-not sitting to standing as is so often done.
There is criteria admission for caregiver stress as well as no improvement at home.i urge you to take that cause up quickly if admission is what you want because starship will take your d at 16 and maybe 17, but after that it will be general hospital and they are...not great.
Sometimes you can't listen to what the team want-they don't live with this day in and day out,they have no idea what it's really like,so their suggestions can be a bit unhelpful.
If you are in Hamilton or Tauranga you still have access to the CFU in starship.
To reduce suicide risk we removed everything from ds bedroom except the bed and her chest of drawers which we took almost all her clothes out of so we could check both bed and chest of drawers before bed.
Please don't let anyone talk you out of admission because of tricks theymight learn there-the truth is your d already knows them if she has any access or has had in the last year to any computer or phone.you have to balance risk v reward(that's the wrong word I think,but it's late).the risk is she might learn a new trick,the reward is that you are still standing up to anorexia just in a different way.if what you are doing isn't working then an admission might shake things up enough to start things going the way you need them to.
Hope this helps.if you have any questions I am happy to try and answer them.you can ask to be transferred to Tupu Ora ,formerly known as REDS,who are the next step after marinoto.


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