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

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deenl
Hi all, 

A bit of background. Noticed 12 y/o son not feeling so good July 15. Aug very depressed, end Aug confessed not eating at all (28 kg = 61lbs) and suicidal plans. 1 week in closed ward for adolescents for safety, ate to get out. Released but immediately stopped eating. 5 weeks in closed ward but ate very sporadically, threatened with ng tube but only once implemented. Lost 2 kgs = 4.5 lbs. They wanted legal authority over him (in NL that would mean as parents we had no rights/ even though at 13 and with no sensible brain he can decide to accept or refuse treatments. WTF!) We objected and 2nd psychiatrist suggested try to help him at home. Released 2 mths ago. Almost no support for us parents but he does have a God send of a pediatrician very experienced with ED. With a loving supportive environment he has stabilised and eaten every single day but no way enough. He's stuck at 27kgs = 59lbs. He has no quality of life and is absolutely miserable but has no concerns about calories, his body image (except that people are uncomfortable around him), exercise, weight, etc. It just like he has a food phobia.

Bought some books. Best of which is Eva Musby's. Thanks Eva, it really has all the info we need to get started. Need to start refeeding on our own in next couple of days. Can't wait any longer.

Almost impossible to have any meaningful chats, he's very closed off emotionally. I joke that I have to talk in tweets! Message has to be short and sweet. Although if it's something that challenges ED then the fireworks really fly, along with furniture, fists, spit, books and anything else handy!

So guys, any tips? 

Wishing you all the very best holiday season you can have in your particular circumstances. 

DeeNL
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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Rayney
Hi deenl,
It is a horrible illness and I am sure you have read on here and in Eva's books etc that food is medicine and it seems it is.  He will need to have more food to feed his brain before any reason, discussions, therapy etc will have any impact.  It is so hard in the beginning, but you have done so well to get him eating at home.  I'm sorry I am not much more help than this, but I am sure others will be along soon with more wisdom.  Well done.x
17 years old, well into recovery and taking full control of food herself and gaining weight, she's loving life at the minute, it does get better!!
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Doitagain
Hi Deenl , if it might help, or perhaps something to have up your sleeve for a rainy day, there is a very qualified FBT therapist in Germany. I know the distances are not small (!!!) but I know you can get a train there too, depending on where you are in Holland and she does Skype appointments after the initial consultation which obviously has to be in person. Have no direct experience as we went another route but did speak at length and liked her a lot - and she was directly and personally trained in Chigaco by Le Grange (of Lock and Le Grange) So I am guessing real FBT .will try and dig out her name for you anyway - might be worth a call. X
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deenl
Thanks for support and tip.
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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momon
Hi deenl

I LOVe the idea of you lining up a FBT therapist you can skype with if that can be done.  The therapists are really coaching the parents at the start much more than doing any work with the child so I believe skype would be quite effective.  Our child couldn't do any therapeutic work at the start due to malnutrition caused brain damage and her young age  (10) and it would seem likely yours is the same.  Didn't matter-- The point is to get food in at regular intervals and move the weight upward so the brain can heal. Our therapist solely served as an authority backing us that daughter had to eat, at the start, in terms of what her connection directly to daughter was doing. IN other words, you can do it without a therapist connecting with your child, but my main concern would be that you try to get the coaching support for yourselves. But if you can't you can certainly still do this, and really you must.  As you realize. So glad you know what you need to do, and have come her to get help on how.

Torie will hopefully come on and link to Eva Musby's video that shows how to refeed with trust not logic. Or try and search those words to find the video, sorry but I am bad at linking! . It is excellent for help on how to start.  My husband and I found that we would need to pretty much sandwich our daughter between us at the table so she couldn't escape and tell her she was going to eat. We wouldn't let her leave.  If we could stop her. We couldn't always.  We would repeat over and over whatever phrases we were using, Eva's video will give you some. I would often say, "Just take a bite." or "just get started. You need to get started now."  It seemed we had to drown out and exhaust the ED  voice. Later we could use distractions like TV but for her at first, we had to run head on at it.  If you gave her a distracter she would simply not eat. And we often followed her up to her room when she ran there, carrying the plate ( it's painful even now to remember all this,  but what I want you to know is that we are league and leagues away from that and you will get to a better place also if you take it on and get the weight on him.)  

Read on here about using "LSUYE" or life stops until you eat. It works for many, but it
is a bit tricky with a child who is so messed up by the malnutrition that they want to be dead. We had that and sounds like you do also... scary to see in a young child and I am sorry you have seen it. We didn't  use LSUYE as she didn't have any life she wanted then, instead we were just relentless that she had to eat. Many times when she said she hated me I'd respond, "Well you can make me go away by eating this (insert item name)." It was my job to be a pain in the ass repeating those words over and over, until she ate it just to get rid of me. And remember, you can lose a particular battle but be determined that you are going to win the war.

We also used little rewards, getting points toward little plastic animals that she wanted. Some folks think rewards are bad but it worked for us as she had no other motivation to eat. I think it gave our d an excuse to tell ED to leave her alone, she needed some plastic animals. Is there something you can try?

At first we were not getting everything in we wanted. Certainly some others on here managed that but we did not.  Our goal was to get in more each and every time , and make sure we got in more than she thought she could eat. We were training her upward in volume, and it worked. But  we didn't go up slowly, we went up in volume pretty fast so she was gaining 1-3 pounds a week at the start.  Pick your foods with care, go for higher calorie right away. Even if you have to battle it harder to do that. Pick a few to add in right away. I added back in milk right away and ground beef right away. Both had fats, calories and proteins. Then breads and pastas. Those were all dreadful battles but good fights to do. And you need to keep repeating each one or they will become fear foods again.  Lock and Lagrange's book explains that as you're going to have to fight to get food in either way, better a battle for steak than a salad.  Many of us agree that battling to get a hi cal shake or smoothie soon will be a godsend to you, but I don't think we could have done that in the first few weeks. Maybe you can.

Will he rage? well, ours sure did. She yelled, she was out of control, she attacked us and broke things and threw things and said she hated us. That does not mean you can't do it or that what you are doing is not working. I kept a log of what new items I got her to eat and marked off each time so I could see my progress.  Come up with what will help keep your morale up. Take care of yourself too, give yourself whatever breaks you can. It is a tough job but the most important one most of us will ever do.

My mantra was "If you are getting flak you are over the target," because it helped me see my daughter's rageful reaction in a positive way so I could keep on going. I also liked "When in charge, be in charge." It helped me get up my courage to do the hard work. Cliches are your friend!!

YOU CAN DO THIS!  Come back on for support and ideas. Come back on if you just need to cry with us. Read the threads because you will realize that the bizarre things you are experiencing are not unique and you will pick up valuable tips. Especially look at the tips on squeezing in extra calories using canola/rapeseed oil and heavy whip cream.

By the way, my d also never seemed to have a concern about body image or weight, but had a knack for pulling out the lowest cal item somehow at age 10, despite not being exposed to any focus on calories.  I thought she simply seemed determined to kill herself by starvation for no reason. But last night, for the first time since she fell ill 3 years ago, she acknowledged that when she was very ill she was afraid of weight gain. I think it can be extraordinarily hard to know what is going on in their heads. Luckily it doesn't matter so much for what you need to do now, what matters is hi calorie food, consumed at regular intervals.

Good luck and we are cheering for you in this journey!


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deenl
Thanks momom, so much the sort of things I needed to hear. For the coming days it may be taken out of our hands as he is refusing to go for his weekly checkup. This is totally not negotiable as he is very much on the border of doing internal damage. Hoping he will find courage to go but if not then may need to be committed to a closed ward. Am implementing FBT refeeding whenever he is home though. Many thanks for taking the time (and bringing back all those tough memories) to give us a boost. Cheers.
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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Torie
Hi Dee -

So sorry for all the difficulty. My Ed-kid is a d, but she, too, was suicidally depressed. One thing I read that I believe to be true, is that when they are adrift in a sea of torment, they need us to stand resolutely on the shore waving a banner that says, "It will get better." My d didn't believe me and also insisted she didn't want to get better. I kept saying it anyway, and also making clear that I would always be there fighting for her and would never, ever give up. I remember her asking me angrily, "So are you going to keep doing this my whole life?" And I said absolutely I would keep doing it however long was needed, although I was confident it wouldn't be needed forever. I don't remember now what "it" was, but I do remember that she seemed relieved to hear my commitment to hanging in there with her for the long haul or however long needed.

Are you keeping your s out of the kitchen and requiring him to eat what you serve? I was amazed to find how much canola (rapeseed) oil I could stir into everything from soup to rice to even some say orange juice although I never tried that. I made very simple milkshakes just using heavy whipping cream (double cream) and premium ice cream that had a small footprint but plenty of calories - I didn't realize how different the premium ice creams were until I had to start reading nutrition labels on everything for the first time in my life.

And finally, here is Eva's wonderful video = it was a tremendous help to me:



Always remember that it does get better.

xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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momon
Oh good, Torie is here!  [smile]  Now you are off to a good start.

I realized after I wrote all that,  I had told you lots of details, but not the big picture which Torie has really provided. I just wanted to add:

For FBT  you are using your parental authority to override the restricting ED voice/compulsions. That is why having both parents together at meals insisting on eating is so powerful; together you are your son's world, especially as he is young. You want to be calm no matter what to convey that eating is safe and you know what you are doing. You won't always succeed but that's the goal. I would try the same thing to get him to the doctor-- both parents together. You may already be  doing that, of course. And I know some kids can be harder to move along, but nearly all ED kids are very hard but still we succeed.  Good luck and I am glad you have that level of medical monitoring!
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deenl
He refused to go to the doctor. That is a line that can't be crossed so we had to put pressure on him all day. He did allow us to take BP, pulse, temp and weight at home so at least we know they are code orange as opposed to code red. But I don't want to make any precedent; he has to attend all medical appointments. Has only eaten one slice of bread today and has been howling crying in bed for last 40 mins. It really sucks.
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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Sotired
It really does deenl.,
One thought I have is that you could say to him if you don't go to the doctor then we will have to call the ambulance service out to you.th.we love you and we are going to take care of you whether anorexia wants us to or not.thats our job.we have had to call a family member so that we could have someone to drive the car while we sat sandwich style either side of our d to get her to treatment.its really important that no matter how much he cries you stay in charge.take the food to his room.feed him with a fork.i have done this whilst just repeating that hat I know it's hard but that I love my d and it has to be done.we are at a much different place now but we tried everything to get FBT to work.prepare for him to throw the food and to have more ready.
You can do this.
Obs happen either by calling ambulance out or taking him to doc but they happen.follow him around with the food if you have to.i fed my d in her room a lot.then we watched TV downstairs after.have faith in yourself and hold the line.
A hug and kind thoughts your way,
Sotired42
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deenl
Hi sotired, Thank you so much for taking the time to give me support and advice. I have read some of what is going on for you and some of the others. I see that times are hellish for you now and the fact you keep loving and doing anything you can has my very deepest respect and admiration. I understand that you might think, 'Yeah well what else can I do?' And you are right but great too.

I have three kids and all three have special education needs too. I am really trying to be conscious not to allow the other two to be neglected. But like you it is some juggling act and I am (touch wood) feeling really healthy. Some weeks I drive round with all three files in the car from one meeting to another! But I really, really love seeing the interaction between my three guys - it's the only normal thing in our family at the moment and for that I am super grateful.

As for ED son, we have to go to the treatment facility tomorrow as his medical condition is very precarious. His BMI is only 12. The have got an interesting proposition. Son always does better around the family so they are talking about possibly admitting all of us to the family bungalow. That way S gets support of family, we get safety net of facility plus hopefully lots and lots of learning moments to prepare us for when he is home. I am really intrigued. One side says not to expect miracles but on the other hope springs eternal.

H and I also struggle with being on the same page. Getting better at it, thank goodness. It's tough though when we both feel different things might help. Passions run high when the life/quality of life for your kid is the topic of conversation!

Balance in life is hard in the midst of this so I really, really focus on any little ray of light. This forum is one and I hope you all can find good somewhere.

Take care, 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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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Psycho_Mom
Hi,

OK, When requiring that all food be eaten, there has to be doable backup plans, and everyone (you, child and doctors) need to be clear about them. (Of course the child won't like them or agree to them--but needs to know that they will happen.) When we were refeeding our d, we had
Plan A--eat all food, (or do whatever else is required for health, like go to doctor apps). Yay! We like this plan by far the best!!
Plan B--IF Plan A doesn't happen, an equivalent amount of Boost or other liquid supplement needs to be consumed.
Plan C--If Plan B doesn't happen, then it's off to the doctor or the emergency room (or we call the police, if it involves violence or refusing to go somewhere necessary for health.) 

Different families figure out their own plans, depending on what will work and what support services they've got. Some families have contacted their emergency room or local police in advance, told them the situation, found out what would happen, for instance, if they showed up at the emergency room or called the police. Your doctor could hopefully help you work out a Plan C.

And it sounds like you are about AT Plan C. Not eating for a whole day is very, very serious, as is refusing to go to medical appointments.

best wishes, 


D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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deenl
Thanks again for the advice. We are in many ways lucky in our pediatrician. She has the local hospital all ready if we need to go. 

S woke up today totally nauseous, real or stress related who knows? He needs to eat ALOT but is only eating minimally. Have meeting this afternoon with pediatrician and psychiatrist. We are all working on backup plans if he refuses to go. What will be, will be. I have to believe that we will look back on this time and say it was hell but turned out for the best. I'm ever the optimist!!
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
Quote

        

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