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

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Alethea
We have been doing FBT for past 5 weeks with YA d and managed c 1kg a week. Her ED team are 5 hour round trip from home so not had much support. GP is doing blood tests and ECGs and we weigh her once a week. 

When I wouldn't let her go back to uni (& definite IP) I told her we would work together to get her better. She was very frightened & made me promise wt gain would not be too fast. (I honestly believed it was going to be very hard, based on previous ED units' inability to do it.) I had previously insisted on weighing her blind but her therapist didn't (I had asked her to!) so I gave up & d knows how much she is gaining. She typically fixates on numbers.

Wt gain is erratic & ED melt-downs horrendous. In trying to be transparent with d I have tweaked the meal plan up or down and length of daily walk so wt gain remains near the 1kg. She claims I am punishing her when wt gain isn't 1kg. I know this is AN talking & am ready to be more stubborn than the illness.
After  4-5 hr scenes, I really struggle to keep a compassionate, loving, stable and supportive face/self. I feel bullied by AN as the meltdowns leave h & I pale, drawn, exhausted, empty. They are violent & extreme. We have to restrain her to stop her harming herself & she destroys things, screams & struggles. They are very familiar to early ones when 1st ill. Medication not an option- only terrible side effects. (Tried them all.)

My question is is it possible to do FBT at home without family therapy? We are very isolated & she sees no one from choice. Finding a private FT that really knows the illness will need trial & error. We have done a lot of long-distance FT when she was IP over past 2 years.

How do I cope with feeling so traumatised & bullied? I am not giving in to AN but know I must support her in a loving, giving way after the scenes when I just feel like taking cover. I have tried therapy but right now don't have the time or energy between juggling 24 hr supervision & work.
 
Any ideas how to handle wt gain meltdowns & my stupid 1kg limit? Should we be doing FBT on our own? She is now at a less critical wt so health services not interested.





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mjkz
If you are dealing with all that and just 1 kg weight gain, why not just push for as much weight gain as fast as possible? 

With my daughter, I just refused to put up with the meltdowns. Four to five hour meltdown are ridiculously long and I'm not all surprised you are struggling.  When my daughter would start, I'd tell her a couple of times to calm down and then send her to a safe place to calm herself down.  I wouldn't stay in the same room as she was if she kept escalating. We set up a room that was designed to help her calm herself down by keeping it darker, putting soft things in there, music if she wanted it, pillows around the walls (mine loved to bang her head on a wall).  I would put in there and check every 5-10 minutes to make sure she was still okay but she stayed in there until she could control herself again. I also let her know I would start taping the meltdowns and show them to her treatment team so they could assess her and know if she needed another inpatient stay because 4-5 hour meltdowns need inpatient care.  I also would tell her to control her own behavior or I would call an ambulance to take her to be assessed or the police if she became violent. She knew that if I warned her twice in the room she was in for hurting herself, the third time meant I was calling an ambulance or the police.

I also found that the less attention I focused on the meltdowns, the shorter they were.  If she started reacting badly instead of trying to reassure her (which simply escalated things), I'd walk away.  I refused to talk to her ED and it was all ED during those times.

I'd give up on the only 1 kg weight gain and get the weight on her as fast as possible.
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MarcellaUK
I admire you immensely Alethea for taking this on. I am guessing that under the UK system you will be having little or no professional help or encouragement and may even face frank hostility if you do turn to some of the services for assistance. You also won't have the choice or any input into admission into secondary care unless she becomes very physically unwell which is what you are managing to avoid by keeping her at home. Bravo to you for doing this.

One professional who might be good to get on board with what you are doing is your local community police officer. If he or she knows what you are doing and why, and can meet you all when you are calm and ED is in abeyance, then if called during a melt-down s/he will understand what is happening and why and may be able to limit ED's rage rather than provoking it.

Mjkz's suggestion of a quiet place for your daughter to calm down in is a good one, but may not be practical for you. We live in a two bedroomed terraced house with every room containing something that our d could harm herself on however hard we tried. On the other hand it did make things worse if I continued to pay attention to ED. In the end we discovered car therapy. D calmed down when driven round the countryside and I enjoyed our trips out too. This might be seen as rewarding the melt-downs and in a way perhaps it was, but it worked for us and was usually (we did have the odd escape bid from the car in the earlier days). Knowing the local police might sometimes have been useful to us in our car travels too.

Re the 1lb weight gain, ED would probably rage whether you had a set range or not. It's what ED does. Blind weighings are the way some families and indeed hospital units deal with this. Other units and methods insist on open weighing and they are a compulsory component of manualised FBT. 1lb a week is a reasonable average for outpatient treatment. Your d knows this however much the ED may try to persuade her otherwise. You have access to basic medical support from your GP so there is no danger of re-feeding syndrome or other medical complications. The only answer to ED when the gain is ever so slightly more one week is hmmmmmmm.
Fiona Marcella UK
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iHateED
Just want to say I'm so sorry for your situation, you've been at this for such a long time.  It is so easy to feel bullied by this illness, isn't it?  Please take some time for yourself as much as you can, even for just an hour or so, like a hot bath or a good book.   I def think you can do this at home with no support from the professionals, you've got us!  I would suggest putting all your thoughts into writing, like a formal contract, and go over the expectations with your D when she is in a good mood and not around meal time when anxiety is high.  Include everything such as weight gain per week, financial support, what it would take to get back to uni, meal support (who chooses and plates, maybe she does some and you do some), and consequences of not following through.   I think having a plan in writing for a YA is the best approach because it gets both of you on the same page. 

Hang in there!
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mjkz
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This might be seen as rewarding the melt-downs and in a way perhaps it was, but it worked for us and was usually (we did have the odd escape bid from the car in the earlier days).


Sounds about as rewarding the meltdowns as having a room to put the kid in.  You use what you have to stop the meltdowns or at least avoid rewarding them.  I was lucky enough to have a room.
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Kali
Hi Alethea

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We have been doing FBT for past 5 weeks with YA d and managed c 1kg a week. 


Getting 5 kg on your daughter in the past 5 weeks is excellent. You are doing very well. [biggrin]

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Her ED team are 5 hour round trip from home so not had much support.

How often is she meeting with her team and do you and h. accompany her? Is it possible for her to see them weekly?

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I had previously insisted on weighing her blind but her therapist didn't (I had asked her to!) so I gave up & d knows how much she is gaining. She typically fixates on numbers.

Can you get back in touch with the therapist and tell her that d. is experiencing seriously disregulated moods right now at home and that it is very difficult for both her and the family and INSIST that the therapist blind weigh her for the time being. You can see then if that can help with the tantrums.

As for the tantrums...can you describe what you think is triggering them? What happens right before she begins? If you tell us a little about what seems to be setting them off perhaps we can help you come up with a plan to help minimalize them. Also have you noticed that there is anything which seems to soothe her so that she stops?

As you say you are remotely located and are in the UK I want to recommend perhaps looking into a mental health provider who works with patients and families remotely in the UK. Although I have no experience with the UK service, they do have a branch of the company in the US and I worked with one of their therapists over here and they were very helpful, professional and well informed, and I had a good experience with them. Their mission is to support families and caregivers of children with mental health challenges, and their website in the UK says that they work with eating disordered patients and also do FBT. You meet with the therapist from your home, remotely via your computer via webcam and adobe connect. If you feel you could all benefit from more support perhaps you can speak with them and see if it could be a good fit for your family. Here is their website:

https://www.healios.org.uk/

As far as being traumatized and bullied, this is a really dreadful part of the disorder and I hope that you will be able to counteract it by doing some small nice things for yourself, take a warm bath, go for a walk in a beautiful garden, read a book or see a movie, have a glass of wine, to help keep your strength and balance during this very very difficult time. 


best wishes,


Kali 

Food=Love
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Torie
Welcome back, Alethea, although sorry you needed to find your way back.

Good for you to keep your d home from school to get her back on track!  You asked if it is possible to do FBT at home without family therapy.   Mamabear is a good example of someone who has done this. There are some other forum members who have done FBT in spite of their paid "help," having found that bad help can be worse than no help at all.
  
I have to say I admire people like mjkz, who always make me feel like they could vanquishe ED through the sheer force of their will (and leap over tall buildings in a single bound, etc. - so strong!).  And then there are others I admire, like forum member Eva Musby, whose gentle persuasion could coax even a very tough case to eat.  Sadly, I can't pull off either of those styles, so I have to muddle along as best I can, lurching from a bad impersonation of one to an even worse impersonation of the other.  I guess we each have to find our own way.  

If you are treating your d at home, I wonder if it is worth considering doing the weighing yourself.  Then you could blind weigh if you wanted to.  Just a thought.

I was confused about one thing you said: "She claims I am punishing her when wt gain isn't 1kg."  Do you mean she thinks she should gain exactly 1 kg per week and is upset if it is more or less than that?  Or?

Please let us know how we can help.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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mjkz
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I have to say I admire people like mjkz, who always make me feel like they could vanquishe ED through the sheer force of their will (and leap over tall buildings in a single bound, etc. - so strong!). 


Torie, it is sheer pigheaded stubbornness.  It was all that could break through to my daughter.  Also it is lots of years of trial and error.  Sometimes I wonder if I could have done it any other way (more gently) but then I look at my girl and realize she is only here because I outlasted ED.

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Sadly, I can't pull off either of those styles, so I have to muddle along as best I can, lurching from a bad impersonation of one to an even worse impersonation of the other.  I guess we each have to find our own way. 


This!!!  You found a way through to pull your daughter through.  It is finding your own way and just being determined that you are going to last longer than ED no matter what it throws at you. 

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Kali
Hi Alethea,

I want to point you to a blog I have been following for the past year. It is one of the best descriptions that I have found of what it is like to have anorexia, written by a sufferer. What I like about this blog is that she is really trying to get well despite the illness, and is motivated and has goals in her life of things she wants to do. At one point I wrote to her and her mom and asked them for advice about how they had handled the transition to home when my d. was about to come home after being in residential and they were very kind and both wrote me helpful emails. They are in the UK. 

Her most recent post has what I thought was a really good description of what happens when someone is having difficulty eating. She characterizes her internal conversation and splits it up: Anorexia voice and rational voice. Anyway sometimes when I felt low and tired from the assault of the ED on my daughter, I would read this blog and come away with some hope.

Here is the URL:
http://everystepanotherstory.blogspot.com/

I hope that today will be a better day for your daughter and your family.

Kali

Food=Love
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daddyg
Your post and all the replies helped me so much, my D and I use car rides for our safe place. I'm in the same place as you!  I feel better about calling the ambulance when I did, my D is still mad at me for that, said it traumatized her, and I said I would do it again, I like the warning part, I think I gave her warnings, but then I might not have, because she has run away.
D diagnosed with AN January 2015, attended PHP, IOP, Residential 18 weeks, back to PHP, IOP 26 weeks, at home struggling, with 1 doc 1 therapy visit per week, til Christmas 2016, back in residential treatment now.
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LauraCollins_US
First: YOU ARE DOING SO WELL!

On the not feeling bullied, I find a lot of families find success in reframing their child's age and maturity. This is a temporary regression, where you're dealing with a toddler in terms of tantrums and pushing your buttons. They feel so undone, so desperate, and so confused: it's like they are a 2 year old without a nap who skipped lunch and their brother is pinching them and you're in the grocery line: and in that situation you see a little vulnerable exhausted kid, and you know that you have to bundle them up and get them to the car and let them sleep it off. You don't feel you are wrong, or that their cries of "I hate you mommy!" are real, or that they will never grow up. You know your job is to be the calm adult, that it's not personal, but that if you respond as if they are rational you will never get through another grocery line again because they're going to work that for all it's worth!

On getting FBT therapy support, you are talking about exactly what those sessions are meant to help you with. Troubleshooting the anxiety you feel, the strategies you need, the reason why you're doing it, a view of HOW WELL YOU ARE DOING, and real goals that carry you along through the phases toward recovery and independence. If you can do all that on your own, and keep your stamina and focus, awesome. But if you need that support and can get it, oh how many of us wish we had had that!
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
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Torie
Wow, fab post, Laura!  You nailed it (again). xx

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

Wow for all those ideas. Thank you all. As always, you've given me lots to think about and to build on. I am really grateful & feel a bit more ready for the next weigh day!

 BMI is 17.2/45kg. I use Eva Musby's advice and tell her to trust me when she is very scared. I feel honour bound to keep to my word about not making wt gain too fast. D has terrible body dysmorphia & at times physically feels like she is expanding rapidly. It is such a fine line between caring for d and extinguishing AN.

 Distracting d from crying by changing subject after sympathetic hmmm helped immediately last night. So simple yet so effective. Feel very silly not to have thought of it. Thank you for that.

 The meltdowns are triggered by being weighed. She knows she has to wt restore but wants to do it slowly (!!) We weigh her 1st thing after getting up once a week. After being weighed, she flips, no matter what the scales say. 

The 4-5 hours is between breakfast and doing snack. By 11 she has worked herself up into 'I'm not doing this anymore' & suicide talk. Eva Musby talk, hugs and love eventually get through but it takes my whole being & is so draining.I feel done in for the rest of the day & hardly able to respond when she seeks love & reassurance but maybe that's normal (& I dig deep & have a go.). In a calmer (exhausted) moment yesterday, she agreed to be weighed blind in future. 

What soothes her is a walk or agreeing to take her for a swim or yoga but that is intrinsically wrapped up with ED. Exercise has been a huge problem to control in a girl that never did it unless forced pre-illness. We do walk an hour a day. It has been upped from a shorter walk when she was such a low wt. H takes her for an extra short walk when upset but I fear this is feeding into the illness. (Yrs ago at the start of the illness she used to insist on a walk after every meal and they got longer and longer & stopped being effective-typical AN, never ever enough.)

 The scales said she'd put on over 2 kg last week (she tried to run away), this week she'd lost 300 gr. The perceived punishment was the reintroduction of extra food and not taking her for a short swim (which I did last week as she had increased by 2kg & felt she'd worked so hard & needed something to reward herself with.) As I write this I can see the dangerous waters I am swimming in re ED thinking! She has been increasing by just over a kg a week & freaks because it isn't exact, then flips. It is just blind fear of wt gain. Laura, I will re-read your words when I feel lost in the melt-downs. They are so clear & helpful.

The team consists of one therapist at an ED unit who consults with colleagues. Because of the postcode madness that reigns in the UK, she is new to this ED service. She was recently abruptly discharged from her last unit after being IP there. All disgraceful. The long journey & support session I did go to seeking FT (& getting a non-FT specialist muddling through)  made everything worse. I had to run after crying d through streets & try to get her back to car & home. Felt very alone and let down by medical service which is sadly the case here...but I do feel all your support and expertise so am ready for the bully.

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mjkz
Blind weights and find other ways to soothe her.  For obvious reasons, the exercise is feeding into the ED and of course it soothes her but even that isn't working very well from what you are saying.  When my daughter got into the "life is not worth living" space, my reaction was why not figure out what you can do to make it worth living and work on goals for after she is weight recovered.  The faster she gains weight, the sooner you will be out of this horrible space and better able to focus on the future.  She is going to have horrible body dysmorphia no matter what and dragging this out trying to care for your daughter sounds like it should work but as you are finding, it doesn't.  You sound completely exhausted and so does she!!!  Forget the 1 kg promise and go all out on weight restoration.  Save your strength for what comes after.
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Torie
1 kg per week is awesome.  Really great.

In my book, gentle walks are ok, but someone needs to go with her to make sure they really are gentle.  Some kinds of yoga are also ok, but I don't know which ones are ok and which ones are too much at this point.  Some here have found that car rides are soothing.

Please remember to take care of yourself as best you can while doing this grueling work.  It's true what the airlines say about putting your own oxygen mask on first, because you can't help anyone else if you can't breathe yourself.

Keep up the good work!!  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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mamabear
There is a new scale out there that has an app with it for your phone. You could blind weigh her and get the weight sent to you. I know someone who recently got it and said it is a godsend. I will try to find out the name of it. 
I found that is we went 4 or 5 hours without food at the place you are at now that ED would get more powerful. Maybe you need to make sure that she is eating something every 3 hours.? 
Love and strength to you
Persistent, consistent vigilance!
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Alethea
Thank you all for thoughts. Helping a lot as running on empty here. She eats 6 times a day and although with lots of anxiety, she has all her meals. Snacks remain pretty much the same. We are with her nearly 24 hrs/7. The most alarming and vigorous activity is during meltdowns. My very suspicious nature wonders about them. (Been living with this pernicious illness for tooo long). The need to be active is big problem but under control and struggling. Am really pushing for family therapy & am full of hope our ED unit will help.Intrigued by app..am going to weigh blind so able to get her to safer place as soon as can. Car rides (sitting for any length of time) cause big stress so won't calm her. Study is godsend at moment but not restful. Hugs, gardening, our walk help, no TV or music or friends. Feel you all trying to think outside the box for me. Thank you.
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Kali
Hi Alethea,

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She eats 6 times a day and although with lots of anxiety, she has all her meals. 


This is wonderful! Cheering you on! Every meal gets her closer to getting well. 

Kali
Food=Love
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