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goblin

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Reply with quote  #1 
Having recently been diagnosed, we have started FBT and at the moment are trying to do 3 meals/snacks per day.  Snacks are just not being eaten at the moment and lunch is also the hardest battle.  Breakfast is met with a little less resistance and tea is fairly hard going.

Yesterday, I gave her an apple and a relatively small amount of yoghurt for a snack.  She refused to come down from her room to eat it so I took it upstairs.  I'm not sure if I am doing this right and I am at the end of my tether.  I start off trying to do the compassionate approach and making sure I am calm and faking confidence like you wouldn't believe.  Offering distractions and incentives to go out somewhere and do something.  
After 20 minutes of complete silence, I told her that she had to give me her phone/ipad until the snack was eaten.  Still complete silence from her.  I settled down on the floor by her bedroom door and she started shouting that she needed to be left alone.  Anyway, to cut a long story short, I followed her around the house with the snack repeating ad infinitum that I needed her to eat this.  The only responses from her were to tell me to leave her alone and later on, banging her head repeatedly against doors and walls and throwing herself to the floor.  I managed to stay calm although I really just wanted to join her and bang my head off walls and throw myself to the floor.

Everything I am reading seems to say to persevere but how long do you give it?  I waited an hour and a half but by this point it was lunch time which I knew would take up to 2 hours so I said I would just have to give her extra for lunch (the extra was a hot chocolate which had more calories than the sodding apple and yoghurt!)

Should I wait it out for her to eat the snack or should I cut my losses and try and get some lunch in her?  
Do you put a time limit on meals or sit it out at the expense of getting potential more calories in her from the next meal?
If a meal is completely refused do you replace it  with something that will have more chance of being eaten or stick to your guns?  At the moment every little calorie is a tiny baby step.
deenl

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Reply with quote  #2 
Hi goblin,

This is one of the most difficult things about re-feeding because there is no right answer. It is all a dance between you, your d and the ED. Each person is different and only trial and error will teach you which is the right solution for which moment.

I think what you are doing sounds great as long as she drank the hot chocolate in the end. Would it be worth trying the hot choc as a snack next time? Maybe it is easier for her to drink her snacks. I made hot chocolate with nutridrink or you can add cream to the milk to boost the calories. I started with a little cream and gradually increased the proportions so that he didn't taste any changes.

I suggest you try to connect with what your gut tells you is the right way to handle refusal. Remember that it can change from day to day or even meal to meal. Trust that you know or will learn quickly what works. Keep going and remember there are many paths to getting the food in.

Warm wishes,
D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
OneToughMomma

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Reply with quote  #3 
Dear goblin,

You've done amazingly well!  I know I would not have lasted the hour and a half. It really sounds to me like you did the right thing.

Deeln is right, you have to go with your gut. FBT is a manualized, standardised treatment. However, each family has to make it work for them.

Our FBT never said our d had to eat everything we served at every meal/snack.  I think that's just unrealistic for many of us, and gives us a sense of failure if we can't attain that goal.  We were told to make our d eat more than she (her ED) wanted her to eat each and every time she sat down (or refused to sit down!).  We also didn't really address fear foods, focusing on what we could actually get her to eat (with a decent calorie density, of course). 

At the end of the day your goal is to get her to gain weight as quickly and with as little pain as possible while recognising that the process is always going to be distressing to her.  It's a really fine balancing act, and I think you did great today.

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]
seaglass

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Reply with quote  #4 
It's so hard isn't it? Sounds like you're doing a great job staying as calm as you can and trying different approaches.

We found we had to find our own ways to make refeeding work. At the end of the day you are trying to increase the amount of calories your d takes in each day and give her regular meals/snacks to get her body used to being fed again. HOW you achieve that is easy 'on paper' but not so easy in real life.

My d preferred to have her morning snack with her breakfast and then we fast forwarded lunch. (she gets up late morning so it works). She preferred one snack to be a drink (think hot choc with cream or smoothie). Over the weeks and months we added a biscuit/flapjack but we did additions slowly.

What's the easiest meal? Go big on that one then you all feel less stressed if lunch is smaller (for example). You can add more calories by adding rapeseed oil to lots of foods (we even mix it in ketchup). She might find supper easier than morning snack and if so you can add in more calories there?.

We found that making meals as relaxed (ha! I know no one is actually relaxed!!) helped. So breakfast snuggled on sofa with rugs over our knees. Some picnics in the sun. Meals in front of television.. sometimes meals in cafe if she'd be up for that?

And lots of distraction after each meal. So crafts, jigsaws, computer game, board game etc... even a sit outside in the sunshine.

I always felt I was not doing it 'right' but I found what worked for us and learnt what things helped. If she's really distressed over a yoghurt snack then so be it. If that doesn't work out then as you've discovered you can make it up with a hot choc or something later.

Baths soothed my d after eating and as a place to relax. Hot water bottles too.

Remember this is super hard. It's like parenting on steroids. Some meals will be easier and some days will be easier. Keep posting here for support and tips. This place is amazing and keeps you going even when you just want to lie on the floor and cry.

Keep going. Some days you might just manage one more bite than she wanted to eat and that is a win.

Easier said than done but be kind to yourself. It's the hardest thing. It's exhausting and you get worn with worry and frustration so take bits of time to unwind. Even if it's just a walk/bath/cuppa in the sunshine while someone is with your d.

Good luck.


tina72

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Reply with quote  #5 
Hi goblin,
as anybody else here said, you did the right thing! We often followed our d through the whole house. She must see that not coming down to eat is no solution. Its great that you told her you will add the not eaten snack to dinner, so ED will see there is no way to get out. The food will be eaten. If not now than an hour later. The message is there is no way out. Life stops until you have eaten.
Sometimes we found it easier to announce that there will be a snack 15 min before so she could be prepared. Sometimes it helped to put the plate away for 5 minutes, get in contact again and than try it again. We often watched little series while eating and so we had some "time limit" because they last normally about 25-30 minutes. TV was a good distraction for us, but as the others said, everyone here must find what workes for her family. That sounds a bit like reinventing the wheel but the target is to learn to find solutions on your own so that you can manage a lot of different situations. That gives you some extra power to see that you are able to do this.

By the way, I must think about telling all the great CEOs in this world that they have to engage some ED mums for solving any special problems...[biggrin]

If hot chocolate worked, try it again and try some smoothies. It is often easier to drink the calories than to eat them. You can add oil to the fruits, she will not recognize it.

You did everything so right and I admire you for your patience. Its a hard job sometimes, especially at the beginning when ED has to learn that you will mean what you say. Sometimes you win, sometimes you lose. But if Ed gets to understand that you will add the food anyway, it will give up. My d said one day: if I have to eat it anyway, I can even chose to eat what I like to. When you win that battle, thats a great part of the war.
Keep on going! Beat ED out of the house!
Tina72
goblin

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Reply with quote  #6 
Thanks for the replies.

Today has been ridiculously hard.  I am not waving but drowning.

I am soaking up every little bit of information that I can find and have now spent many, many hours reading through the many insightful posts on here.

It is so horrid to watch this disorder take hold.  I am exhausted and my daughter even more so.

I think I am probably getting about 1500-1600 calories in her each day which is an improvement on a few weeks ago when it was 500-600 but I know it is not enough.  This is exacerbated by her constant standing and exercising which is almost harder to deal with than the food refusal.  She is in the bath at the moment after asking for 30 minutes if it would be ok to sit down in the bath.  I also have to tell her it is ok to get into bed every night and then check on her every 15 minutes until I know she is sound asleep - often  1 or 2am and then up at 5/6am to shower and try and prep some food before she wakes.  So,so tired.

I am almost ashamed that I never realised how truly awful living with an eating disorder was.

It is all consuming even though I try and make some ED free time with my daughter everyday where food is not talked about or referred to. At all.  

I have become the crazy lady in the car park at supermarket who is furiously trying to decant whole milk into semi- skimmed containers.  The trolley guy saw me doing this for the second time this week.  I will have to change supermarkets!


deenl

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Reply with quote  #7 
Hi goblin,

Quote:
Originally Posted by goblin
She is in the bath at the moment after asking for 30 minutes if it would be ok to sit down in the bath.  I also have to tell her it is ok to get into bed every night and then check on her every 15 minutes until I know she is sound asleep - often  1 or 2am and then up at 5/6am to shower and try and prep some food before she wakes.  So,so tired.


Hate to add to your worries but it may be a good idea to leave the bathroom door open to make sure she is not purging [frown]

My son, too, had great difficulty sleeping. He was not eating enough protein to provide the building blocks for melatonin, the sleep hormone. Luckily it can be taken in tablet form about an hour before bedtime. It is available on prescription or in the health food shop but it may be worth just double checking with your doctor first.

Hope you have a better night,
D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
seaglass

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Reply with quote  #8 
Firstly you're so right about how incredibly hard and all consuming it is to live with a child with an ed. The good thing about finding your way to this forum is we all get it and knowing that gives us all space to vent, seek advice and gather support to get us through each day/week/hour.

Secondly to move from 500 cals to 1500 cals a day is great. You're doing a great job. Don't forget that. It's hard but you're doing it.

The early stages of refeeding are the hardest. ED is fighting back big time. And it's hard on all of you. In the toughest times I used to remind myself that however hard it was for me it was so much harder for my d. That helped me dig deep and find compassion when I really felt like sobbing/screaming/running away!

Have you read Eva Musby and watched her videos? Super helpful. Also the book Throwing Starfish Across the Sea is a good quick read when you need strength to pull up your 'big girl pants' and keep going.

For sleep ask about Melatonin. I put magnesium flakes in the bath too, which help with anxiety and sleep. Audio books while falling asleep helped too as do sleep stories from the Calm app. They have mediation and relaxation techniques woven into stories. Even in the most difficult times they helped my d fall asleep. They also helped me!

I found it helped to go day by day. Sometimes we went hour by hour. Each chunk you both get through is another step forward. If it was a tough hour/day then breathe and start again.

I paid for weekly counselling for myself which was a big expense but having that hour of support was vital in helping me cope and stay strong. Worth considering?

Keep posting. Let us know how you are doing.
Torie

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Reply with quote  #9 
Quote:
Originally Posted by goblin
I have become the crazy lady in the car park at supermarket who is furiously trying to decant whole milk into semi- skimmed containers.  The trolley guy saw me doing this for the second time this week.  I will have to change supermarkets!

Hahaha - So impressed that you are managing to maintain a bit of humor in your viewpoint!  You're doing great.  Please remember that we're with you in spirit and that it does get better.  Really.  xx

-Torie

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

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Reply with quote  #10 
Goblin, you are doing wonderfully!!  You doubled to tripled her intake in a week which is awesome.  You are getting food into her which is equally awesome.  I couldn't do an hour and a half.  Seriously I'd be crazy if I had to do that.

We did timed meals and snacks.  She had an hour for a meal and half an hour for a snack. Anything not eaten in that time was replaced by a supplement.  Also any exercise done was given two warnings and then a supplement to help curb the exercise compulsion.  If your daughter will do supplements, that might be a way to go that keeps you sane and also gives you time to dedicate to non-ED time with her.  I did follow her with the food if she went into her bedroom or anywhere in the house for the alloted time and then she had to drink the supplement.  Nutrition is important and however you can get that is what counts so if she will drink calories, make a super shake and put it in the empty supplement container [biggrin]

Remember to do something for yourself too to keep yourself going.
EC_Mom

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Reply with quote  #11 
You are a hero, and you are doing so well already! I spoon-fed our d, in her bed, against her sometimes-violent resistance, climbing back and forth over her with the spoon while she rolled to face away from me. For months. I never would have imagined doing such a thing. I didn't know my arm could last that long in an awkward position. It was so awful, exhausting, terrifying and even surreal.

Now she is nearly back to normal (knock on wood). When I look back I can't believe it. What you are doing is what success looks like, keep going!
walterk

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Reply with quote  #12 
I am new to this forum but not new to being the care giver to a child with an eating disorder (2 years).  Mine has been through IOP, PHP, residential and hospitalization.  She's been tubed 2x by the time she's 14.  My question is when and how do we see the o recovery take place?  What is the sign?  In two years this kid has not voluntarily put a single crumb of food in her mouth.  I feel like Casandra...every time she starts to slide back with her behaviors and weights we tell her where she is going to end up and she does.  I know you can't logic your way out of this illness but when does this thing crack open?  I asked a nurse at one of her placements when do you see recovery start and she depressingly said that it can only happen when the patient gets tire of the ed.
tina72

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Reply with quote  #13 
Hi goblin,
you are doing an extremly good job. Go on, even if its hard at the moment. That are the times when ED tries to take over again. If you stand this time, you will get into the next step of recovery. Then you may see another harder time when Ed tries again to take over. But the "easy" gaps will get longer from week to week. ED must learn that there is no way to take over control again. Then it will let your daughter go. The time that is needed is very different and I think it depends on a lot of circumstances, for example how deep she was stuck in ED and how long.
I think you already know Eva Musbys book. Its a life saver, really, not only for the kids but even for us. Thanks Eva, that was one of the really helpful things.
Its great that she asks you if this or that is ok. She seems to rely on you and leave control up to you. Try to use it against the exercising. Tell her it is NOT OK to exercise and that you have to add more food if she exercises that much. If she understands that exercising will not have any positiv effect for her ED, she might easier stop it.
Try to sleep one hour during the day. I am doing naps after lunch for months now and that helps to get through the nights.
Do not feel ashamed about not knowing what ED is doing with the lives of people. Nobody of us knew that before. I didn´t know ED exists 1 year ago.
It is consuming. It is a marathon. Thats why it is REALLY IMPORTANT that you do something for yourself. You are the most important person for your d right now. If you break down, she is almost lost. Remenber that and try to get a bath too...
Great idea with the milk!!! Don´t think about other people watching you. ED teached me some things: not to hear and rely on everybody, not to think about what other people think of me and my family, not to feel selfish. It teached me to ask for help, to keep my family together and to spare some extra time with my husband as often as possible.
You are doing great! You do the right thing! Keep on going! It will get better soon.
Tina72

tina72

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Reply with quote  #14 
Hi walterk,
maybe this question is better to be answered from all this people with elder kids who are in recovery for some more time now.
In our family we think it relies on weight recovery. Since our d reached what they called her "target weight" she is much better.
There were a few little signs of recovery in the last months: it started with less argueing, than no argueing at meals. Than she was compliant to add new (and former "forbidden") food to the plan. Than she started to snack from our plates (which we surely didn´t commend).
When Ed saw there is no way to get over control again and that we are a wall in front of our daughter, it left very slowly. It is not gone at the moment, but its hidden quite well. If your d isn´t eating voluntarily anything, give us some more information please. Do you still control every meal at the moment or did you give back some control to her and its not working? What are her Ed behaviors?
Tina72
goblin

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Reply with quote  #15 



Thank you everyone for your kind words but I am really not doing well - I feel like I am getting it all wrong.  

I keep reading about how many calories some of you are able to get in to your children and I know I am not doing enough.  She will just not have smoothies which means I can't use them to hide extra calories in.  She has so many fear foods now and I have tried reintroducing them with disastrous effects and it actually becomes counterproductive and nothing gets eaten.  I will keep trying but maybe one or two pieces of pasta on a plate and try and build from there.  In the meantime butter is my friend.  Also, she will eat omelette and scrambled eggs so I am able to double up on yolks without it looking like more (5 yolks in an omlette last night).

Deenl - you mentioned about purging - she is practically emetephobic and has only vomited 3 times in 14 years. It is a source of great fear for her. However, I am not complacent as I can remember her saying a couple of years ago how she could never get an eating disorder as she loved her food so much.  She leaves the door ajar when she bathes and I always listen out when she goes to loo after eating.  With regard to her sleep, since the day she was born, literally, she has not been a great sleeper so the late nights are not a new thing, the only difference is I cannot leave her to her own devices now as she will not get in to her bed as "lying down is bad" so I generally stay in her room until she is in bed to make sure she is not exercising and I can keep reassuring that it is ok to get into bed and threaten to sleep on her floor.  This works but can take up to a couple of hours at its worst.

Tina 72 - She is not eating anything voluntarily at the moment and every single mouthful is a source of great distress. A few weeks ago we were able to sit and play cards, do buzz feed quizzes, watch TV whilst eating but for the past 10 days she has been in such a state that it has not been possible and she rejects every single distraction I can come up with.  All her anger is directed at herself and she constantly apologises despite me telling her repeatedly that there is no need.  I really wish she would would hit me instead of herself.  More recently, much of her distress is because she "doesn't feel bad enough" and has eaten too much.  There is not a single mouthful of food at the moment, that goes in without prompting and every mouthful results in her hitting/scratching herself or jumping up and down/pacing.

It is hard doing this on your own.  Logistically it is difficult as there is no-one to distract her when I prepare meals or make the meal again/reheat hence she is left alone while i do this which means she is probably exercising or ramping up her anxiety levels at the though of having to eat.  The alternative would be to have her do something in the kitchen so I can still speak to her but this wouldn't work as she would see what I was putting in her food.



My heart is breaking for her.  She is such a great kid and this is destroying her.  I am struggling to keep it together.  I had an appointment to see my Dr last week to ask for help for myself but had to cancel at the last minute as lunch had taken forever and she was in meltdown so I had to stay with her to make sure she did not hurt herself too much.  Oh the irony.

This is getting harder with every mealtime and her resistance and distress seems to be getting greater.

 
 
walterk

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Reply with quote  #16 
Thank you Tina72, my daughter is 14, she's been in treatment/diagnosed for 2 year.  She has some weight n her, enough that the insurance bounced out of the hospitalization program only after 4 days from when the tube was taken out.  She's in IOP now but more than likely heading right back to residential.  Her behaviors are restricting, she had been purging (no binging though) and  the last time she was in residential she scratched up her arm really badly. She mostly restricts food.  She will not put an ounce/crumb of food in her mouth unless forced.  When she was at residential in May she refused anything so well she fainted in the shower, lost 10 pounds and ended up in a hospitalization program at their insistence. Her ED has realized that if she out waits things the insurance will give out before her ED does... she was in residential for 3 weeks and in the hospital for 8 1/2 (11 1/2 weeks away from home, at one point she hadn't been outside in fresh air for 5 weeks!) and still she came home with her ED intact.  She used to love soccer- lost that she used to love to run- lost that, she is on her way to high school- we let her pick her school from 3 and of course she chose the most expensive one, but now it looks like she won't even make it to school to start her freshman year...she definitely has dis-morphia, and she is willing to give everything she loves up to ED.  I am at the end of my rope... we learned nutrition and FBT/Maudsley method at her PHP last summer, we learned how to be supportive and did an entire family tree of illnesses and relationships at her residential, we've tried CBT at another place and she's had a slew of different medication cocktails.  I was really looking for the sign that the patient wants to work to get rid of ed-- I know how hard it is to recover but she has no desire.  We can't teach her to reframe, use skills, use relaxation techniques, meditation when she doesn't want to get better...
EC_Mom

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Reply with quote  #17 
Walterk, I suggest you start your own thread to get responses to your questions. Introduce yourself--it's good people here.

Your poor daughter cannot choose to get better, and it's not her fault that she can't eat more. It seems like she could do better, but the ED is holding her mind hostage. It's hard to believe, but truly she is dependent on others to MAKE her eat. When her weight gets closer to what it should be, then symptoms will likely abate and things will get easier.

You have had FBT but you are saying things about the patient "wanting to get rid of ED". True FBT, I believe, would not expect anything from the patient about wanting to get better. Part of the illness is that the patient does NOT want to get better.

BTW the nurse is wrong, recovery does NOT depend on the patient getting tired of the ED. You have been told wrong things. FBT holds the promise that nutritional rehabilitation (which is difficult) will slowly produce changes in the brain and the patient can slowly get better. But there is NO expectation that the patient will desire recovery before being nutritionally rehabilitated (i.e. refed).

Read around here! You will find useful info and a lot of ways to reframe your challenges with your beloved daughter. Many of us have gotten wrongheaded advice, it sounds like you have received your share. Very very frustrating!
seaglass

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Reply with quote  #18 
Goblin,

Forgive me for replying so much. You remind me of me a few months ago at the start of FBT.

There's no 'right'. You do the best you can with the best you've got. Please know you're doing a great job.

My d was hard to refeed. Each week I was advised to introduce more variety but I soon discovered I just could achieve more if I got as many calories in with foods she would eat. I worked with that and added rapeseed oil wherever possible. My d wouldn't drink smoothies. She would drink hot choc (I added ice cream and cream) and Horlicks (less milky but LOADS of vits and calcium).

I decided to stay sane and feed safe foods and over the months tried easy additions.

I know some just have success facing fear foods head on and introducing calorie laden smoothies but this wasn't possible for me without severe distress.

Not every ed child needs thousands of calories a day. Go week by week and see if she gains. If not slowly increase with an extra biscuit here, an extra omelette there...

I sleep next to my daughter. It sounds odd as she is 14 but it just helped us both get rest each night and have less worry. I don't know if that's something you'd feel happy doing it if you both need your space?

FBT is tough. It was too much for us and we switched to intensive therapy at CAHMS. We still gave 3 meals and snacks but gave up on FBT sessions as they were too hard going. You have to see what feels right/wrong for you and if it's not working ask for more support.

We now have weekly session with psych (with weigh in), weekly CBT and weekly sessions with a CPN to chat over what is working and problem solve. It's gentler. It's slower but it's what we need.

One size doesn't fit all.

It's so hard at this stage. You're overwhelmed, you feel like you're not doing it right. But keep going. Find ways that make eating easier for your d. I know in FBT you're advised not to offer any choice but I used to sometimes offer a choice of two snacks with same calories and my d felt more able to eat if she had that choice.

Have you got friends and family to support you? Can you reach out? Even an hour here or there to escape helps. I dug deep and asked friends to come and sit with my d (I even asked my ex MIL!!) just to get space to breathe.

Finally don't compare. We're all in a similar boat but each family has to find their way and the best support. If you're struggling ask your care team to help. Are you in the UK?. If you're with CAHMS and feel unsupported put your foot down and ask for more help.

Keep going. Keep posting. We're all here for you xxx
tina72

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Reply with quote  #19 
Hi goblin,
you have a very hard time now but if you try to go on with refeeding it won´t last forever, I promise. The first weight gain is the hardest. But when ED gets to learn that you are strong and consistend, it will be better.
I´m very impressed that you are doing that on your own. I cannot imagine that for myself. Don´t you have anybody (friend, family, neighbors) who could help you?
The problem is that you need the most power at these hard times when you have less power than before. But if you stand that now you will come to a better level.
Try to go on. You are doing the right thing. You cannot imagine that at the moment but your wonderful kid is hidden behind this ED and if you kick the ED out you will see your d coming back. I didn´t believe this 6 months ago and I can tell you that our d is completely back now. There is a life after surviving ED. It waits for you out there.

Don´t get her into the kitchen. That won´t help.
If the fear food isn´t be able at the moment, leave it and try it again next week. It is like a baby: if she doesn´t like the carrots today, try it another day. We had to try about 10 times to introduce juice again. At least it worked at the 11th time...
The amount of calories to gain weight is very different, don´t rely on that too much. Some kids need up to 6000 cal, we needed only 2500 cal to gain weight. It is very different. As long as she gains weight and its more than 100 g a week, you are doing well.

Try to see the positive things: You are able to feed her. She is eating something. She is not purging.
Our d didn´t hit herself, but she did cut her arms (she learned that in hospital from other ED patients). We bought her a punching bag and told her to use that if she is angry and wants to cut herself. That worked quite well and now I´m using it, too. The problem often is that the kids are so overwhelmed by their emotions that they don´t know where to get rid of them as soon as possible.

We think about you. You are not alone. We all know how you feel at the moment but there is an end of this tunnel. Keep going.
Tina72
Torie

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Reply with quote  #20 
Goblin - You really ARE doing great!  This is super-hero stuff and we are mere mortals so none of us can do it perfectly.  It is so, so hard to find our way on this terrible path.

I don't know if this would work, but I wonder if it might be worth trying a s-l-o-w introduction to smoothies.  I wouldn't suggest that, but they really are so very helpful it's worth some extra thought to consider if there is a path to success with them.  Maybe start with a single sip?  Maybe a straw would help? Different flavor? You spoonfeed her the one bite to start?  Wake her up with smoothie in hand "Here, drink this" and she can roll over and go back to sleep after?  (Sometimes it takes ED a while to fully awaken so success is better before they are even out of bed.)

You don't need to reply to those suggestions - I just wanted to throw them out there in case you think any of that is worth a try.

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

-Torie

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Torie

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Reply with quote  #21 
Quote:
Originally Posted by walterk
My question is when and how do we see the o recovery take place?  What is the sign?  


Recovery will start when she has reached the proper weight FOR HER (which may be a different weight than the "experts" think and will almost certainly be higher than what they tell you).

EC_Mom is right - you have been given advice that is incorrect, outdated, and downright dangerous.  My d, like so many others here, most certainly did NOT want to get better.  That's fine.  You can drag her into recovery anyway, as  I did with my d.  I would encourage you to try to put this out of your mind and stop thinking about what your d thinks about this or any other thing related to AN, weight, size, shape, recovery, etc.  She is not rational right now - as is to be expected when someone suffers from an active ED.  Repeat - she is NOT RATIONAL; you are dealing with an irrational person on these topics so don't let her comments get to you; don't argue with her; just ignore ignore ignore and change the subject.  The only exception I can think of is a brief, "I'm so sorry this is hard" type comment and then a swift change of subject "How do you like my new socks?" is the ATDT classic.

The only thing that matters is that you find a way to get her weight up.  The faster the better.  Doesn't matte if that happens at home, IOP or IP.  Just get her to the right weight.  Then her brain can start to recover.  

Please feel free to ask all the questions you like and please keep us posted.  xx

-Torie

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Reply with quote  #22 
Hi Goblin, I hear you! I remember feeling really awful and a complete failure because I couldn't get loads of calories into my D too. Everyone's journey is different, just as we are all different people. Sounds like you really are doing great but I know how draining and exhausting this is day after day. Taking great care of yourself when you can is essential to help you continue so you need to try to find a way to do this.
We went quite slowly as my D completely stopped eating for a week and was at great risk of re-feeding syndrome so it was incredibly difficult as she would not tolerate textures in the beginning so we had to use smoothies, drinks, soup etc to build up slowly. You can do this, you already are doing it. I also slept with D quite frequently which helped me to feel safer too and then I was also able to sleep or rest.
I listened to my gut a lot and did what felt right, most times this worked. D was not allowed to eat on her own and sat with me and my H for evening meal and with me for breakfast and lunch when I came home from work to eat with her.
Distraction helped, we put TV on during meal times and this was quite successful in helping her eat.

This forum was also a life saver for me so come here often.
xx

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Reply with quote  #23 
I am in floods of tears just reading your replies.  It helps enormously to know that there are people that get it.  I am sorry for posting what are probably very long-winded nonsensical posts but it really helps just to get it out there in the ether.

I thought last night was as bad as it could get but I was wrong! today has been even worse.  That'll teach me to think we've reached rock bottom.

We had our second proper CAMHS FBT based appointment today and it was a farce.  The psychologist who was there at our initial assessment and next appointment is on annual leave.  She is great and my daughter, although reticent, respects and likes her and has engaged with her far more than I thought was possible.  They work in pairs and so today and next week, we are just seeing the other person whom we met for the first time last week.  It wasn't that it didn't go well but it was a nightmare nonetheless.  She said that if snacks were difficult, try having a yoghurt pot and not to buy the large pots as my daughter might find it easier to eat.  Seriously?!  I have been buying the large pots and putting probably twice as much into a bowl (hence twice the bloody calories) and now my daughter won't eat yoghurt that's not in a small pot.  The psychologist/CPN (I don't even know what she is) was very hard to engage with, lots of head tilts and hmm hmm's.  When I explained that my daughter will throw herself to the floor, punch herself and repeatedly bang her head off door frames, she suggested using blu tac or play doh to pull despite myself and my daughter trying to explain that this has been tried and failed and we are way past the stress ball/blu tac phase.  Oh it was awful.  

On  a more positive note, we met with the medical doctor who will be overseeing my daughter and she was super.  Very direct and informative.  She suggested possibly starting Olanzipine (sp?) if there is no improvement in the anxiety levels but my daughter was adamant she wouldn't take it.

When we got home from the appointment, lunch was met with radio silence.  I tried for an hour to get her to eat and there was no response.    I had said that as she hadn't eaten, she couldn't have her phone and she started to cry and hit herself.  What followed was not my finest hour.I jumped up to grab her hands in order that she would stop punching her head and she threw herself to the floor.  I just yelled "stop, stop, stop" over and over which made her more tearful.  It was horrible.  The snack I later provided was also met with silence.

Anyway, I am wittering on.  the last couple of hours have been calmer, we've played some board games and forgot about food for a while and I am psyching myself up for tea.

I would like to ask people that have been through FBT - what normally happens at a CAMHS FBT appointment?  What kinds of things are discussed?  I know that there may be regional variations between teams.  I am based in Edinburgh.

She has gone from 44.6kg to 45.3 in the last fortnight.  Not much at all.  I will keep trying with the smoothies and thanks to whoever mentioned just starting with a sip.  I have a small shot glass which she likes so I might start with that and go from there.
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Reply with quote  #24 
Hi Goblin - It very hard on our Ed-kids going to these appointments so it sucks that her mental state was worse afterwards, but it isn't really surprising.

I would urge you to be careful with the shot glass.  Someone here ended up with a d who refused to drink out of anything other than a shot glass, and you don't want that.  (Although, if that is the only way to get part of a smoothie in - maybe it would be worth it?  Your call - I just wanted to mention it so you would be aware of that particular feature of this minefield.)

Sucks that the hired "help" undermined you about the yogurt pots.  Honestly, pretty much everyone here has been undermined by the "professionals" one way or other, or ten or twenty.  In the end, we have to explain to our kids that WE are the true experts, the people who know and love them best and while we listen to the suggestions made by the hired "help," we're the ones who make the call. 

"I'm your mom.  I know exactly what you need" became a mantra in the Torie household.

Oh, and when you dump the yogurt into the bowl, I hope you're stirring in some rapeseed / canola oil.  It disappears without affecting taste or texture unless you go way overboard.  

Hang in there.  xx

-Torie

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seaglass

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Reply with quote  #25 
Goblin,

I'm in Edinburgh too. Possibly know some of the people you're working with at CAHMS as the team is pretty small. I would love to email you to chat through it more. Not sure if that's possible through this forum?

Also on Aug there's a parent support group. It's at CAHMS (royal ed) and we missed it last year but heard it's good for at least the chance to meet other parents. It's called the Edge group and there should be posters up soon (or ask)...

I've got sooooo much to say about Edinburgh CAHMS!

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