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

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Francie

Hi Friends,
We allowed our d to stop her ED therapy because we saw it was making her worse (long story short - she was up against a fear weight - a therapist picked THAT WEEK to all of a sudden get nitpicky about my d playing Sudoku during breaks and it all just snowballed into a power struggle that no one was going to win and only my d would lose). We have charged our d with finding a new ED therapy program and we've given her 1 week to do so or we will find one for her.

Our d was to have restarted her SA DBT therapy this morning but I couldn't take her because she didn't eat her breakfast (I would have been happy with an apple). She ate an apple before morning appts. 3 times last week so I know she can do it.

I really COULDN'T take her this morning because I felt like to do so would have been sending the wrong message that I was complying with the ED. She confessed that she had dreams the night before where she was dreaming she was too fat. She said she felt nauseous this morning.

Her next DBT appt. is Thursday. She likes DBT and my H and I can see that it helps her in many aspects of her life. Staying home from DBT today means she'll play computer games in isolation all her waking hours. I was fearful that the fact that I kept her home because she wouldn't eat breakfast might mean she won't eat today at all to spite me but in fact 1 hour after we were to have left the house for DBT she at an apple, cereal and cottage cheese. I am not sure she kept it down but H and I ignored that possibility and told her we were proud of her for eating and fighting the ED voice.

 I don't want this 'therapy stops until you eat' to turn into a power struggle between her and I because we will both lose. I tried to make it not that by saying that perhaps she took her seroquel too late last night and that Weds. night she might consider taking it earlier so she'll sleep better and not feel so sick the next morning.

My H is home today and told me that we've never kept her home from T because of not eating before and he's right. He disagreed with me but instead of fighting me about it in front of her he left the room and we talked privately and all was fine [thumb] between us which has not always been the case. 

What do I do? Do I keep her home on Thursday as well? She'll get kicked out of DBT if she misses too much. Her weight is at the very low end of healthy right now. We are monitoring it at home.

Also what would you say/do for a 19 year old who is having dreams and interrupted sleep over ED thoughts? The seroquel she takes is to quiet these sort of thoughts but I guess it didn't work too well last night.

Thank you!

Francie

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deenl
Hi Francie,

Just wondered if you are certain that she actually took her medication?

Also, would it be possible to email/talk to her DBT treatment team. This is a TIB and they will have seen it before and might have ideas/support to help you.

Lots of luck Thursday,
D

Big hug to your hubbie who handled his disagreement really well. And you obviously received it well too. What a team!
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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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mjkz
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We allowed our d to stop her ED therapy because we saw it was making her worse (long story short - she was up against a fear weight - a therapist picked THAT WEEK to all of a sudden get nitpicky about my d playing Sudoku during breaks and it all just snowballed into a power struggle that no one was going to win and only my d would lose).


Francie you have painted yourself in a corner with few options at this point.  If this were my daughter, I would send her right back to the ED program.  It was a fear weight and had nothing to do with Sudoku.  It may have been a power struggle but she needed to have that struggle. It wasn't her against the therapist but her against her ED.  Letting her quit just gives more power to her ED and now you are seeing that she can't even eat an apple at home in the morning.  Your daughter is still very sick and needs to fight her own power struggles.  She got herself into it and perhaps the therapist saw that all her anxiety and emotions were not being expressed the way they should  be but rather being dealt with through Sudoku.  The rules may not make sense to us but there is a reason why they have them.  Letting her quit just gives her ED an out.  When she gets to that fear weight at the next program, it will be the same situation only a different thing to struggle over.  I honestly think that you are going to repeat this over and over again until she is forced to finish and face what she doesn't want to face.  I know as parents we want to help our kids but sometimes helping them is not rescuing them and not making things easy for them. 

Being happy with just an apple eaten in the morning is not good and you already know it is not enough.  If she cannot do this outpatient, maybe you need to have her move into an inpatient or residential program that can address all the issues in a place where she has to stay and work them out.  I have learned the hard way that when my daughter get into power struggles to stay out of them as much as possible.  I can be sympathetic but I know she has to get through the struggle to recover.  Every time I have let her back down or supported her side in the power struggle, she has had a relapse.  The only way to recover to working through those struggles and coming out the other side.  She is not going to want to do that and she will come running to you to try to win.  Best way is just to step aside and let daughter and the therapist work out whatever was going on.

It really sounds like trying to do this piece meal is not working for you.  You have her address one thing and the other things get out of control.  The choice I would be giving my daughter is you either go back to the Ed program you left or you admit yourself somewhere that can deal with all the issues at once and keep her safe, sober, and eating while she does it.
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HateEDwithApassion
Hi Francie,

Gosh - I'm so sorry. I hate reading this because it's heart-breaking. 

I don't know if this is helpful, but when my D was first diagnosed, we did practice life stops until you eat, but therapy was always non-negotiable and required. 

This week at DBT, we've been learning about reinforcement - both positive and negative. How we, as parents, can accidentally reinforce behavior we don't want. Like getting into power struggles where they know sometimes - even if just here and there - they will get their way. I'm kinda thinking that letting her get out of therapy when she was being challenged or nitpicked was accidentally reinforcing that "flee" mentality. If she is stressed and tells you her therapist is unfair, you might let her skip it. Could that be? The concept is new to me but really has got me thinking about the things I reinforce without wanting to.

All that being said, do you have any leverage over her in other ways to get her eating? Phone time? Computer games removed until she eats? Social media? Music or books you could buy her to encourage her to eat? A promise of a social outing? It's tough when they are older, I realize. And I also know I'm not telling you anything new. I just wish I could help. [smile]
19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
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Kali
Hi Francie

This sounds difficult. I believe from reading your past posts that your d. was at a center my d. tried early on although my d. was at a different location: and our experience was that she really got worse and disintegrated while under their care. I'm to this day not sure whether it was just that she was too ill and really needed a higher level of care, or whether that particular program was just a really poor fit for her. But she went somewhere else which was more helpful for her.

If something isn't working and my d. tries it for awhile, I've had the attitude that something needs to be changed up at that point. In August I was not happy with some things I was seeing D. struggling with and expressed that to d.s team (not in a judgmental way towards her team, but just that I thought d. was struggling and I was concerned) and since then she has 3 appts each week for therapy and nutritional counseling. Seems like a lot but she is going and stepping up both the care AND mealtime support seems the best way to help her right now. 

So don't be afraid to change things up when you see that a particular situation is not helping your d. But do research what other options there are and encourage her to continue with something which will help her.

The DBT seems important, my d. did quite a bit of it and said that it helped her so the question is how to get her to eat AND go to DBT in the morning.

D has a go to breakfast when she is running late and needs to leave the house quickly in the morning.
A Naked Mango Protein Smoothie and a granola bar. Together they are around 600 calories. Can you try that or something similar? It is a relatively small footprint (amount) of food.

Good luck, this is the worst.

Kali
Food=Love
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Francie

Thank you, friends.

What purpose would it serve to march her back to a program that wasn't helping? I could see early on that the program was inferior to the DBT she had left and her attitude was getting worse. I saw it in the first week. Additional questionable things went on besides what I wrote about.

Although my d was not 100% bought in to recovery, she was at least getting herself to the building each day and was participating. She wavered because she was facing a fear weight. I know that and have admitted it. What she needed at that time was a skilled therapist who could have reeled her back in and helped her ride out that discomfort. That's not what she got. [tounge2] What she needed from me was a shrug of the shoulders regarding the therapists comment and that's not what she got. The mistake I made at that point was a knee jerk reaction and agreeing with my d that the therapist was out of line. If I could have held back on that protective mamma stance and shrugged off the therapists comments and encourage my d to do the same the outcome might have been different. The experience taught me that and I won't ever do that again.[nono]

Regarding residential care: Not off the table and is being considered strongly in this household so please stop beating me over the head with it. There is this DBT and 1 more IOP program in my state that we have not experienced yet. I love my daughter, I make mistakes but I'm not incompetent, I've read lots of the books and I've done my research. Amen.

In 2012 my d was given the choice of residential or day treatment. We chose day treatment (the same location that failed her a week ago - different team) and they succeeded in putting over 30 lbs on her over the course of treatment. After I got to know more about the disease I saw this outcome as nothing short of a miracle that I am still profoundly grateful for.

My d is back in college like normal young people her age. She has secured a volunteer position that she enjoys. Hopefully this won't happen but if her weight spirals down like it did in 2012 we will send her to a more intensive (residential) program. I am loathe to have her lose the normal, healthy endeavors like college and volunteer work to send her somewhere that may or may not make a difference but will surely interrupt the tiny gains she's made in building a normal life for herself. When she came out of the hospital in March she spent months on the couch wrapped in a blanket. She's come a long way from there. 

See what Dr. LaGrange has to say about the efficacy of residential treatment vs. IOP in this video here:



Some good news: I heard from her DBT therapist yesterday and was happy to learn that unlike last time, they will now medically monitor and treat her for the ED in addition to her other struggles.

A sincere thank you to you, friends. Here's what I learned from this exchange:

  • Not do a knee jerk 'mommy will protect you from the bad therapist'
  • Not keep her from helpful therapy or helpful volunteer work when she doesn't eat a meal. Instead take away the unhelpful things: computer, phone, etc.
  • Put a plan in place that includes a good residential program and a good IOP program in case DBT is unsuccessful in making progress with the ED
  • Get her a new, hip individual therapist (the one she has is okay but I think she'd do better with a younger, hipper one)
  • Not let her get away with skipping her volunteer work
  • Talk with her daily about the importance of fueling her body with food and encourage her to eat with the tactic of that's how she will be able to live the wonderful life that is ahead of her
then...step away but follow through with the treatment plan if she doesn't get better. It's what I'm learning in Alanon.

Yesterday my anxiety rendered me ineffective for the entire day: I didn't do work I was supposed to do, I didn't do errands I was supposed to do, I got in a fight with my husband, scared the dog and yelled at two strangers (from the safety of my car). And in the evening I humiliated myself by blubbering through my turn at a lengthy 'sharing', causing two women to cry because I had inadvertently dug up difficult memories for them.

I hope everyone else is doing better!

XO


 

Francie

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ninhursag
Hey I have experience with that Center in a different location and honestly your experience sounds very familiar. Our experience was actively destabilizing, staff was very sure of themselves and inflexible but symptoms kept increasing until they finally advised residential which was even worse (though at a different center).

Frankly eating with ED is hard and uncomfortable no matter what and the goal is to find something that will let you do it anyway without being actively damaging. If your daughter finds sodoku makes eating easier then that's not exactly a bad thing. In my experience the diversions become less necessary when ED is less strong but even if it didn't so what?

I'm also extremely skeptical that residential has any more long term efficacy than a day program and the data bears it out. Yes if someone is just refusing and it's a life threatening situation sure. Residential gets weight on people in that case and saves their lives. But you still end up with someone who eats very well in programs and not at all well outside and then welcome to the treatment revolving door.

Maybe it's because I know more adults who have been through the system but the reality is that FBT was invented because RTCs do not work for most people beyond the very short term. It's a tool in the toolkit until we have better ones.

Sorry not to hijack your thread! I think it's great that you're not throwing good energy after the bad and coming up with new strategies. Dbt has been very long term effective for many people I know in finding real alternative coping strategies and distraction is a huge one!
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Torie
Francie wrote:
Yesterday my anxiety rendered me ineffective for the entire day: I didn't do work I was supposed to do, I didn't do errands I was supposed to do, 'I got in a fight with my husband, scared the dog and yelled at two strangers (from the safety of my car). And in the evening I humiliated myself by blubbering through my turn at a lengthy 'sharing', causing two women to cry because I had inadvertently dug up difficult memories for them.


We all do those things, Francie. (Well, we all have our own lists of similar things we do.)

Forgive yourself.

You're human.

Like the rest of us, you're a regular mom called upon to do hero's work. It takes such a toll ... such a terrible toll. I wish I could give you a giant hug and a big mug of whatever beverage would help you most.

This vile illness is a monster. You're a hero. Don't forget that. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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mjkz
Hey Francie how goes it?  Were you successful in finding another program for her?  It is certainly encouraging that her DBT team is also willing to monitor the eating.
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emma99159
Hello! As someone who has an ED and knows many people who have tried seroquil, it is known to have effects on your dreams. EDs themselves fill people with fear and anxiety. Thats probably where the dream of being overweight came from. But seroquil also contributes to this, as its known to cause some really crazy dreams. I'm not sure if that's a side-effect with your D but if it is, I'm sure its not helping the ED dreams. I am very happy to hear that you and your H have been supportive of her, I've heard bad things about parents who don't understand that their children are much more fragile, and the slightest comment could bring up bad anxiety. If you need any tips, I can figure out how to message on this forum and can help you on knowing when to commemorate her eating and whatnot. I hope you find a good treatment facility for her! Take care♡
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aloha
mjkz wrote:
Hey Francie how goes it?  Were you successful in finding another program for her?  It is certainly encouraging that her DBT team is also willing to monitor the eating.


You are trying your best, i did similar to you but had to revert back to O.P care, it was a mistake on my behalf, your story resonates with me that i am tears.
please dont beat your self up i have done so too and the anxiety is intense, but remember stay firm on this and it will improve. (that is for me too).

a big clap on the back for your patience this is such a difficult time.

A.

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Francie
Hi Friends,
Thank you all for the support. My anxiety has been especially high this week. And my h and I have not been getting along -- I have set up an appt. with a couples counselor and we'll go next week. Our parenting style is so polar opposite: He is so hands off you might call it neglect. I am so hands on you might call me a helicopter parent. With effort we are sometimes able to meet in the middle and we have been able to do that with our d's ED finally after 4 years I feel we are starting to get it right some of the time. 

My d seems to be doing well with the DBT and actually put on 3 lbs last week [smile] !! And purging is one of the behaviors on the list that she is to decrease and use her skills with, and eating 3x a day with calories of 1800-2000 is on her list, too. She's not accomplishing these things daily but I am thrilled they are on her radar and she is aware and my h and I have agreed that she seems to be trying. I don't think she's doing so well with the eating /purging this week as the weight gain freaked her out a little bit but I am trying to measure her progress over the long haul and it seems on the upswing at the moment. 

Emma, my d has shared with me that she's had some outlandish dreams. I can share with her that it might be the seroquil. Thank you for letting me know. 

I hope everyone is having a good week! I am thinking of you and am so thankful to have your support. This is a lonely battle and this forum makes it less so. XO

Francie

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mjkz
That is so wonderful Francie.  It sounds like even though pulling her out of the ED program was bumpy, you are still making great progress.  Just goes to show how different things look to you on the ground there with your daughter VS what we may see.  I'm glad you went with your gut and are seeing progress.  That is huge.

I hope you and hubby are okay.  4 years of living through an ED can either kill a relationship or make it stronger and it sounds like overall it has made your relationship stronger even if there are bumps along the way.
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