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:

slpm

My d (at 14 yr) was diagnosed with AN in August of 2018 and she ended up in hospital for 10 days right at the start of an outpatient program (low ekg). Earlier that spring I noticed she was getting super anxious and we started to run together, me thinking it would help anxiety. This became consuming for her and her weight dropped 10 lbs and was accompanied by restriction. When she got out of hospital we started the outpatient program and re-fed her to their suggested weight and then they told us that she was ready for phase 2 and choices, and back to pediatrician to track for weight. The program wasn't helpful because they only did group therapy weekly and the facilitator was allowing an older girl to monopolize the conversation regarding her pan sexuality. My d was adamant about not going, and I thought we could maybe find a better solution too. If she did not do that group she was seen on a monthly basis by eating disorder psych. I wish I would have looked for outside therapist right then! Team decided to let her try to get her period at this weight because she felt like it was the right place (where she had started her period fall of 2017). I was skeptical!
She started playing HS basketball Nov 2018 then lacrosse in spring 2019 and maintained this weight within a pound up or down for the next year but never started menstruating again (she only had 4 months of spotting in 2017 then she stopped). Summer 2019 was difficult with no school schedule and me feeling like I had no leverage to feed her, she was choosing most meals and refusing some of her snacks). When she would dip a pound or two I would try to get her to eat more and she would go back up the pound or two. November 2019 the doctors said she needed to gain more weight (and gave a new range) before she was 16 and that they were worried about her bone density and the length of time without period. Test ordered and hormone levels checked. Bones were fine but she had low estradiol. Holidays, weekly weight checks with pediatrician, and then I researched and found therapist outside of our network to work with her weekly in late February. After 3 weeks of "seeing if she could do this on her own (back off mom)" therapist changed tactics quickly and suggested that we do a 3 week trial (if you don't gain weight you will need higher level of care). After the first 3 weeks (during covid, I blind weighed her at home twice but no dr visit, therapy on zoom which actually works well for her) I decided to bring her back to pediatrician. I asked her pediatrician to send a follow up note with instructions and when therapist, dr and I were coordinated she started to gain weight. Therapist pushed for higher level of care at start of this trial and just when she started gaining there was already a panel decision for residential treatment. D was deciding to gain weight, choosing food and eating sweets etc. Not a ton of freedom with what she was eating but feeling positive and encouraged. Now weeks later she has gained each week and as of last week was a pound off of new range. She was put in IOP an hour away but almost all on zoom. It has been 2 weeks while waiting for bed in residential and I am really conflicted. D just started doing the group meetings, psych and dietician yesterday for first time in the two weeks. She is so upset with me because she "was gaining" already and doesn't think she needs this. Her outside therapist is still tracking with her weekly in addition to these other appointments. I am really conflicted about sending her into residential treatment when she is gaining weight at home. This IOP is more concerned about her behaviors: eating 100% of plated food and actively participating in getting better in these zoom meetings. (I never required her to eat 100% when she was gaining initially when out of hospital so this feels weird to both of us) She does leave bits of food sometimes but is solidly eating 3 meals and 3 snacks and has been for 6 weeks now. She had been choosing well for herself before the IOP but lacked variety. I have expanded variety and she is managing that well too. I think she is angry about working hard and being told she is sick enough to go into this IOP or a residential program. Honestly this is the hardest I have seen her work this whole time. I also know that this is coming at a cost to all of us (H, 2 older siblings at home from college during covid and of course me...the one who does the work and takes the heat). I don't think she has an exercise compulsion although she is an athlete and enjoys exercise she has been willing to lay low and has been conservative on this front. She is constipated and has trouble drinking water because she is full. She might be in extinction burst or just really upset about being "threatened" to higher level of care when she is working hard but she does call me names and yell and is inconsolable at times. She feels alone. I want to comfort her but she won't accept right now. Huge toll on our relationship because we have been through so much to get to this point! On flip side she has been relating to dad and siblings in more positive way and seeking out friends on video calls so lots of plusses too.
I would like perspective on the decision to send her to residential (6 bed home, own room 4 girls there now age 12-17) or if we should keep on at home with the outside therapist and the IOP program. This is the first time in a year and a half that she has had a co-ordinated team and she was gaining weight before she got to the IOP. She is physically more sound than she has been in past 2 years and estradiol level on the rise. If she goes to residential she will step back down to this same program. After the things I have read here I am concerned about sending her away and then having her come back home! Also, this program will not take D if she doesn't want to go...which I am sure she does not! Any advice from people who have been through this is welcome. Sorry for the long ramble of details!!

Quote
Foodsupport_AUS
Welcome to the forum, and thank you for posting. 

Here are my thoughts for what they are worth

It is not unusual for someone with an eating disorder to try harder when threatened with a higher level of care. Avoiding something they don't want to do/ or their eating disorder doesn't want to do can be a powerful motivator for keeping on moving forward. It is great that you have finally managed to see weight gain over the last few weeks. Sadly it sounds as though your daughter was significantly underweight for several years, and although she had gained some weight she has never had the continued weight gain which is normal in adolescence. Maintaining weight is not normal at this age, it should increase. 

Really you have two options - one is to say OK we can work on this at home, insist on consistent weight gain, outpatient treatment - you can set some rules and boundaries around what is required. Weight wise she is likely to need to be at or above the weight centile she tracked in her younger life. She needs periods back, and then some more. 
The other option is to say that you have tried her her way so far and it is only under threat that things have changed, so she must go to the more intensive program. 

It may be that the moment the more intensive program is off the table you see a lot more resistance. Many find once they get started things get easier for a while, then harder again down the track as weight increases. 

My daughter strongly resisted having treatment throughout. If she knew an admission was imminent she would stop eating altogether.
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
Aefw001
Hi SLPM,
It sounds like this has been a long road for you, your D and your family.  You know your D best so all I can offer is my own experience with my D.--she is 17, was diagnosed with restrictive eating disorder in december 2019 and we began FBT re-feeding in January 2020--we did a 1 week intensive family therapy program at UCSF in late Jan. 2020 which was a good start for FBT and meal coaching and then had weekly weigh ins at pediatrician and weekly FBT therapy sessions.  By last month we had managed to get 30 pounds on her but reached a point where she was expressing such distress over gaining any more weight--and engaging in food hiding and weight manipulation (learned the hard way that our kid needed to be weighed with no sports bra/no undies, just hospital gown, and  do a jumping jack before she get on the scale to protect against this)--that our FBT therapist advised we had two choices--to continue 24 hours surveillance of her, which required us to pat her down after every meal and snack and be on alert all night for exercising, etc--or we could send her to residential to complete her weight restoration.  We opted for option 2--which was the most difficult decision we had made thus far in her ED journey but we feel has been the right one.  She was in residential for 15 days when our insurance decided she was ready for PHP (her treatment team wanted at least another week) and has just completed her first week of PHP and is about a pound away from treatment center's goal weight for her--which is 10 pounds above where her local doctor had initially been aiming.  Everything I've read on this forum and in ED resource books validates that the higher weight is when our children can really begin healing.  We know we'll have the next challenge of maintaining her healthy weight when she comes home but so far, feel strongly that having a wonderful treatment team supporting her (it was the same team in residential and PHP) has been very important. We're hoping to continue with Intensive Outpatient program locally once she's home to help us continue her recovery.  For my D., I hope that having had the experience and stress of the residential piece of this (even though it was for a short time period) will be motivating for her to avoid in the future if she struggles with a relapse.
Quote
deenl
Hi slpm and welcome,

When I had choices to make about my son's treatment, I would think of a lot of scenarios and what I would do if they occurred. I would think of the best case scenario, the worst case scenario and the most likely scenario. I would also think about how I would handle difficulties and problems that were likely to crop up. Sometimes this helped me to see the right course of action and other times it just prepared me for what was to come.

If your daughter went IP there seems to be a clear course of progression but the plans around refeeding at home are not as defined. Do you think you could flesh them out? Obviously the best case scenario there is that the current team works out well and your daughter continues to gain weight and agrees to any other treatment deemed necessary. The worse case scenario is that once the threat of IP is passed she sinks back into her past behaviours. What would your plan be in that case? In our case, the most like scenario was often quite messy. We planned for some progress with ED resistance. So we had to do things like pat him down after meals because he would try to hide food, in spite of being observed. Bloody magician. Or we would plan what we would do if he refused a meal or part of a meal. Those kinds of things. What would you do with the most common forms of ED resistance?

Once you have thought those through, you may be able to see more clearly what would be helpful in your own particular situation.

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
MKR
Hi @slpm,

I cannot offer advice re residential care, but you mentioned name-calling. I guess this is ED and not the loving daughter you know. Still, I suggest you tell her calmly each time "This is not the language we use in this home". I also add, "I do not use insults when I speak to you." Over time, she will have heard it enough times for it to sink in.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
Quote

        

WTadmin