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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Need to talk with another parent? F.E.A.S.T. parents offer peer support via:

Aefw001
Hello,
Thank you for having this forum.  I just joined 🙂  Our 17yo daughter was diagnosed with restrictive eating disorder in early Dec. 2019. We attended an FBT weeklong all family member retreat in late January 2020 and have been re-feeding at home since then.

My daughter is within 5-10 pounds of WR range.  Her safety behaviors of hiding food, hiding Boost drinks, and now we've discovered she sewed things into her sports bras  (appeared to be about 1 1/2 pounds of extra weight) for weekly weigh ins at her pediatrician's office (blind weighing). She wears a hospital gown when being weighed but was allowed to keep on the undergarments.

Things were going well--making good progress both physically and mentally over the past month despite being in lockdown for 5 weeks.  This week things have gone off the rails and they were not helped when during our video visit with her eating disorder specialist 3 days ago our daughter "overheard" the discussion of her goal weight--she was supposed to be in a room with a closed door and clearly wasn't it and we should've just taken the call in our car.  

Doctor mentioned that these could be "extinction bursts" as she nears WR but this feels like A LOT.   It feels similar to the early days of this and we feel like we're running out of options and energy to keep moving forward.
Quote
Enn
Welcome! 
From what you have written there seems to be a few things that could have made her upset.
1: She is a within that 10 pounds of WR. So maybe its is extinction burst. 
2: She heard your discussion with the doctor and that would affect her
3: We are all in lockdown and these changes can be hard to manage for all of us. With ED it can even more of an issue

I am not sure if it really matters why she is upset, she still needs to eat and gain. What exactly are you dealing with right now? We could likely come up with some ideas to help you. I know how hard it is and hope that you are taking good care of yourself too. 
Please ask all the questions you have. We all wish to help.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
Aefw001
Thanks for your reply, Enn.  We are dealing with refusing to finish her plate--leaving a few small bites, which therapists have told us is important to have your child finish everything on the plate because if they don't, that gives the ED a "win". We're dealing with now having to physically pat her down during meals and snacks to ensure that she is not hiding food somewhere.  The most recent escalation is definitely due to overhearing the target weight.  We have our weekly video (during the shelter in place) meeting with our FBT therapist tomorrow but welcome any suggestions on how to get her through these next few weeks to make it to Phase 2.
Quote
Foodsupport_AUS
Welcome to the forum. 

It is normal and expected for her to have increased anxiety over these things. As weight goes on the anxiety and fear of gaining more weight commonly increases rather than decreases. It also increases when strategies being used to "stop weight gain" are found out - like finding the weights, noting food hiding, stopping skipping parts of meals. 
It is true that ED is causing those last few mouthfuls to be left behind, which is why there is an insistence that they be eaten. 

It sounds like you are doing really well, getting weight on, despite the resistance. I know you are eager to get to stage 2. What many parents have found however is that using stages and trying to rush through things seems to be a way to end up going backwards rather than forwards. You may like to read this thread. 

Right now I think just push on, take time. Try not to focus on how far there is to go but on how far you have come. Keep feeding and with time (it will be much longer than you want) you will get there. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
Quote
Torie
Hello and welcome.  AN is a tough illness to deal with, and as you are seeing, that final stretch of weight gain is often the hardest, which is saying a lot.

You are doing great, though!  Really.  And it sounds like you have found a competent team, which is a huge plus.

I think you know exactly what to do - you keep putting one foot in front of the other exactly as you have been doing.  You take it one day at a time (or one meal at a time or, on really bad days, one bite at a time) day after difficult day until you start seeing glimpses of your precious real d.  

You will get there.  You can do it - you ARE doing it.

Please feel free to ask all the questions you like. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
teecee
Welcome. It sounds like you are on the right track and doing well. If ED is upset you’re doing the right things....if happy then the ED is in control. Keep doing what you are doing and keep control over the ED. The answer is always more food at this stage and for a long time. Things will settle down as she gets used to this new ‘normal’ but it does sound like extinction burst. My Ds behaviour was off the scale at this point and was very shocking as she had been (mostly) compliant. 
Quote
Vicky2019
Hello. My child is about the same stage as you; we have been refeeding for about 4 months, short hospital stay. Things seemed to be going well but she has really ramped up her aggression and self-harm the last week or so.  My child isn't eating all their snacks or even all of their meals occasionally  (if it is something difficult like pasta) despite my best efforts. BUT  she is still gaining weight.
It is a funny time. I tell myself this is (hopefully) extinction burst; I also tell myself it is a tricky situation we are in right now and I don't have even the normal resources to help me. So I focus on the weight gain at the moment. If your child is still gaining weight I would keep plodding on with that. Don't stop asking, but maybe not finishing her meal allows the ED to stop badgering your daughter?  I think it's lovely to have these rules about finishing everything and eating 3000 calories a day: it works for a nurse in hospital but we don't have the threat of an NG tube here at home and we get a lot more aggression and self-harm. I figure I can tackle 'eating everything' when we are weight restored - I am trying to build a good relationship with my child so she has an ally against the ED.
Also I have offered small rewards - if we eat 1 of our snacks we can go on a small walk (to feed the ducklings which is very life-affirming) or a short easy bike ride - these seem to help because it is something positive.
Regarding the food hiding and weight-adding behaviour - i think i would call it out - 'i am sorry but we can't let you eat in long sleeves because you can't help yourself  hiding food' . Nothing nasty, just 'you are too ill to manage this right now'.
it is exhausting and you wish they would just give you a break for one day. I find myself hating the ED/child often, then i feel like a terrible parent. I think you are doing amazing, really amazing in all of this horrible situation. Do what you can - and be gentle on yourself. The goal is to gain weight, not to have a perfect eating record; you are achieving that. 
Quote
Aefw001
Thank you for your kind and helpful responses. We do feel like these are extinction bursts and will continue to hold the line no matter what horrible thing she says to us (when the ED talks, our D uses our first name so we know stormy seas ahead). She continued to move forward with weight gain at weekly vitals check--her first without the benefit of her sewed in sports bra weights so it was extra welcome.  And we know that vital checks day and the days immediately after are always highly reactive for her because she knows she's gained weight though not how much.  Someone on another thread made the comment that remaining "neutral" as much as possible can be helpful--appreciating the "good" days but not getting ourselves too thrilled because a challenging day will be forthcoming and we need to be able to not let it devastate us--so I will try to focus on "even keel" moving forward.  
Quote
deenl
Hi Aefw001,

You sound like you are really making progress and learning some emotional skills to keep you balanced. I hate to be the one to raise a doubt but knowledge is power! My son was also one who hid food a lot especially after he had improved a little and had the energy for tricks. We, too, patted him down after each meal for a couple of months. After the usual ED guff for the first couple of days he settled into the routine calmly and would even stick out his arms and say "I guess you have to pat me down" on the times that I forgot. A subtle reminder for me without riling up ED.

One of his other tricks was water loading before an appointment. He would drink lots of water and not go for a pee so that he weighed more. A sign of this is when the weight gain is going up and down each week. Just keep an eye out for it.

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, 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

        

WTadmin