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.

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KaitlynM
So it's mother's day...i'm sure there are lots of mom's out there with very mixed emotions today...
i've been reading like a maniac and although i've read words like frustrated, angry, afraid , i've never felt them like this...

anyway...

My D spent 19 days in residential at Renfrew...she did exceptionally well..  got home and did well in the first couple days of step down (2 meals and snack/ home by 230) but started sinking wed/thurs..

and now its the weekend, and despite a pretty good friday nite, its been sinking steadily and finally blew up after lunch...i tried to get her to eat a snack and she just sunk deeper and deeper...the more i tried the more she isolated to the point where she finally went upstairs..she threw stuff...said all the mean trigger things..etc...and then she wouldn't eat dinner...and only relented when i brought food to her bed.....

we know its a real possibility that she is heading rightback to a residential center soon....we are not going to have the next stay covered by insurance, but we do have some $$ socked away for one more stay there to get more refeeding done more consistently..perhaps i'm too hasty ...but my understanding is that refeeding is medically based..you have to keep it up or you lose progress really quickly...i think my D figures she'll never go back and is testing us...i don't think we've developed a moral imperative over her ED yet...we end up backing off in a puddle of tears and shame...

my questions are two really...i am reading alot about FBT...i even bought the "manual" for therapists to get my head into it.....but we are not coached in it...today is another day ...tomorrow she heads back to the day center where she will be weighed...but i want her to eat today!!!!!
i get from the materials that i need to be empathetic... and i need to raise the divergences...she is very excited about summer...her two faave cousins are coming in a month...is it ok to point out that her eating disorder is trying to ruin that for her? that she is likely going to have to start refeeding all over? that she could end up missing out on her cousins trip?? that her ED lied to her before about being 90ish lbs being "healthy"? and its lying to her now telling her she can somehow magically not refeed and not lose weight??

i think renfrew helped my daughter, but if this goes on longer than a month it becomes prohibitively expensive...and so far renfrew has been WOEFULLY inadequate in helping us as parents do our best...trust your instincts is the best i've got so far from them...

do people switch gears in this saga?? is it too early? too late??  you can imagine after investing so much in this, seeing so much progress and then have the rug pulled i am flailing around here...

my own instinct is that my daughter really wants to get better, she thought she was better and is now horrified to learn that she's not(yet)...and that in itself is triggering her...and so even tho it hurts me so bad, sending her back there for refeeding (that worked so well before) seems like a good idea...

and in the meantime, we can evaluate the FBT methods and shift gears over time?? I understand from EDBites that i'm near a terrific FBT doctor...i'm planning to call her office and ask whether they take families that started at renfrew...is that ok?





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Bontoplen_USA
The only thing I would say is you should never hear from a facility "Trust your gut",they are the professionals.If it were me I would find some place else.They should give you tools to take home. Don't settle,ever.
Bontoplen
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Onedayatatime_USA
Kaitlyn- Happy Mother's Day. So sorry you have to be part of this forum I would tell your D that ed is trying to take her life. This time last yr, D had not been DX but we knew she had ed. We did tell her that if she continued down this road she would die, she would not be able to enjoy her life. At the beginning we did not have a FBT, we instituted magic plate & life stops til you eat. Our back up plan was if you don't eat then we are heading to ER. We had a RD who was familiar with eds & athletes, a Ped doc who was learning as we went a long. If you can find a qualified FBT, give them a call. We moved to another state in Oct & found a wonderful FBT who is 2 hrs away but she helped us tremendously by getting her back on her growth curve.

Hang in there. You can do this. Yes it's hard but it's worth it.

Edit--just saw where you asked about FBT after renfew. Call them. We were 3 months into refeeding when we started FBT
Having fun in Tween Land.
DX--11 yrs 5 mons (5/12), WR--12 yrs(12/12)
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nevermorED
Getting started with FBT is a great idea. Our experience with it was that we all sat in the Therapists office and focused on only this: parents job is to provide food in needed quantity and frequency (start with renfrew meal plan if that is easier) sufferer's job is to eat food served at the table within 30 mins. Distraction for 1 hour after to prevent purging and to comfort. Just like hospital.

Sufferer is required to eat, just like if she had an infection she would be required to take her medicine. Serious business. Hard stuff. But you can do it! Support and backup from FBT made a difference for us.



Mom to recovered RAN daughter, now age 18
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perdido
If you have money socked away and you want help getting started with FBT I would get signed up at UCSD for their family week intensive. You can also look on the specific treatment provider forum to see what places would be good to send your d.
You can also cobble together a team and come here and ask questions and get lots of help. Where are you located? You could have very good FBT help around the corner and not know it.
I just retread and you are near a great ed doc, yay!!!!! Get on the phone on Monday and get that appointment.

Cs here often for love and support and helpfor your d!!!!
Hugs and strength!
Slow and steady
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hopefulmama
Kaitlyn-I am so sorry you are having such a rough weekend, but you are in the right place for support. It is NOT too late to change courses. My d is 18 and we switched to family involvement after weight restoration and she has made amazing progress since.

If Edbites is recommending an FBT in your area, you should look into it. My d went IP in Feb. She had been once before in July and I wanted to be sure this time that we went somewhere that supported and empowered families to be involved and didn't tell us to "not be the food police." Based on my extensive research,I think there are a handful of places that fit the bill. Each one has it's unique strengths and weaknesses. Kartini in Portland, Laureate in Tulsa, CHOP, Denver Children's, ERC in Denver and Veritas Collaberative in Durham. (I'm sure I am forgetting someone and hopefully members will pipe in and add them.) There is also a one week family intensive program at UC San Diego that would get you on the right track and you can follow up with them in weekly FBT when you come home for continuity or if local support is not available. All of these places would teach and empower you to support your d and provide skills to get her to eat when she can't.

Sometimes part of this process is learning what does NOT work so that you can switch to something that does. This is a mean, invasive and insidious disease that is trying to steal your s from you. It will keep you on your toes to combat it. However, you CAN do it and you will receive incredibly knowledge and support here!
Enjoying my 23 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
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alwaysvigilantCAN
agreed with Perdido; read Jangled's story from beginning to end.
You are your D's support system and you need to do what works for your D's safety, health and your family's wellbeing.
Take one day at a time; don't be afraid of the ED-you can be quaking inside, but as long as you show your D that you are going to help her get over this no matter what it takes.

Have you seen this page on Feast : Making a Treatment Plan  How to evaluate Treatment Providers may help as well

Dr Sarah Ravin's blog has lots of really good info as well.
5 years in active recovery; With many, many days of full nutrition and closed loopholes, insight, life experiences and brain maturity we are slowly loosening the safety net
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rubiegirl8_USA
the night my d came home from a 72 hour psych hold, i explained to her that from now on i make all meals, and her ed does NOT need to know ingredients or measurements for anything.  she was not to come into the kitchen while i was fixing her food.  i told her ed was trying to take her away from me, but that i'm ready for the fight, i will never give up, and i'm going to win, period.  she was very compliant, looked relieved, and drank the smoothie i gave her immediately.

the next day, when i gave her a plate of food, she dumped her water into it, turned her plate over onto the table, and screamed the most horrible things to me.  i did not back down on what was required of her.  when she finally calmed down, she was very remorseful and teary.  i made two meals just in case, so i gave her another plate of food and she ate it all.  this repeated in the following days, with chairs being thrown, her trying to turn over the table, various nearby objects flying across the room.  and i came close to calling 911 more than once. 

the day i could no longer take it, that i thought this is out of my hands, i can't do it, i got on the phone to make arrangements for her to be picked up immediately and taken to the hospital.  i had to hang up with the person i was speaking to and call the number she gave me to set it all in motion.  at that point i looked in at my daughter and i could see on her face that she had given up the fight for that night, and she looked terrified knowing that if i was in my room on the phone with the door closed, she must be on her way back to the e.r.

at that point i knew there was no need for her to be hospitalized, and things began to get better after that.  i am still fighting the big fight with ed, but it's not as bad as it was those days after the 72 hour hold.

hang in there.  you can do it. 
dd 17yr old dx april 2013 at 12yrs old, W/R end of july 2013, phase 3, california
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KaitlynM
We are in Philadelphia...I understand that Dr Peebles in my area is an excellent possibility...

One thing that happened for us is that our D had a great 19 days at renfrew....she complied over and over...she liked the structure...she was a star there..
and they stepped her down with alot of confidence...
I wondered why they didn't really give us any tools...i asked over and over...what if?? should I? and they were just woefully short on details...

altho i think our daughter made progress, i learned more about actually being a parent to an ED child in three days on this forum and carrie's book than i did in a month with them...
  I just watched a wonderful video posted here from KeltyMentalHealth that basically highlighted everything i did over the last 2 days was just making things worse!!! 

I'm grieving the loss of our innocence right now... We really let ourselves think it was "this easy"...i get it now...i have to take a breath and dig in...i have to take an attitude that i will never ever back down from saving my daughter, and last nite i started telling her that her ED has no chance to win...none... she responded nicely to that after a horrible day...

IN army talk , the situation on the ground is she goes into the day center tomorrow...weigh in will show her setback...we have our first family talk on tuesday...based on what i'm learning here, i need to ask the therapist what "style' of therapy she is doing ...i am going to directly ask her about FBT..i met her last week and she is very bright and upbeat, i was impressed...but our discussion was in the context of our D thriving in the program...

I am reading here about concepts that i've never heard of and my daughters life is on the line..so its quite scary and i dont want to jump to conclusions...but honestly i havent found a "renfrew" site with 100's of parents banded together to help their kids....in the short term i'm planning to use some principles i've learned in this short time...empathy/discrepencies....ED is another animal than my D...calm/consistent/confident..we are going to plan out next weeks meals if things calm down...so we will eliminate the constant "whats next" stress..

i will also reach out to Dr Peebles group and see what the deal is...i'm guessing i have to get in line for a consult anyway...but i am nervous that if we pull the plug on one way to do things that the ED will get louder and feel that because it can beat the first try it will win out over the second

but its attractive to me to take total control over the situation if I feel i have the tools to make this happen...i am trying to take the attitude that as hard as this is, its a life changing opportunity to improve my daughters life...she has been suffering quietly for a very long time...the perfectionism has haunted her since a toddler and the self loathing i see did not just pop up from nowhere...



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Charlotte_UK
Rebecka P rocks.  Just saying.....xx
Mother, wife, farmer, C of C and M Productions
http://www.youtube.com/user/CandMedPRODUCTIONS#p/u
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ccmom_us
Kaitlyn,
I was where you are right now a few months ago with 'my 14 year old daughter. She is currenly being sen by Dr Peebles group at CHOP after being inpatient at a non FBT hospital (Prineton) I sent you an email with some additional information.. Hang in there, things will get better!
CCmom
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Bontoplen_USA
My D sees Dr Peebles too she is absolutely wonderful,she goes above and beyond.See her you will not be disappointed,in fact I believe you will feel empowered for the first time.Also expect your first visit to be about 3 hours,everyone comes in from nutrisionists to social workers,at least they did with us,I was so impressed.I believe Dr. P will be THE go to for any type of ED no matter where you are,Go you will not be disappointed!!!
Bontoplen
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biomom
KaitlynM wrote:

One thing that happened for us is that our D had a great 19 days at renfrew....she complied over and over...she liked the structure...she was a star there..
and they stepped her down with alot of confidence...


First of all - it's really common to have a really rough transition like this from residential. This happened with my D after she left McLean as well. She later said it was incredibly hard and scary to go from a place where she felt "safe" eating (eating was non-negotiable, she was in a supportive community 24/7, she got a TON of positive feedback over and over throughout the day for being compliant) to doing it "all on her own" when she didn't "have to." ED is probably telling your D that she's weak and bad for eating now that she's out of Renfrew and she no longer has to - stuff like that. Plus the lack of structure at home was hard for her, too - things felt disorganized, she didn't have a schedule or a routine or really, anything to do during the day which was also different than McLean where every hour she had to be doing something and there were no uncertainties. 

So the best thing may be to make home as much like residential as possible - eating isn't a choice, meals occur at and within set times, positive feedback and privileges for doing well...

19 days isn't very long at all. They say it takes 21 days to change a behavior like biting your nails - think of how long she's been ill and 19 days isn't enough to build those new brain pathways that will enable her to make non-ED choices. My D also said it was really hard to come home and "fail" because it felt like everyone was expecting her to be "fixed", she was expecting herSELF to be "fixed" like you said and realizing that things were still so far from "better" was so hard for both of us. I found it helpful to keep my panic and anxiety and shock to myself - she interpreted my reactions as anger and disappointment with her that she wasn't magically cured. Obviously a bit of cognitive distortion, but I think when their emotions are running so high and they have little experience in dealing with them productively, mine just add fuel to the fire.

You can absolutely shift gears, in fact it sounds like that might be a good idea. Will Renfrew back you up if you implement FBT? It's interesting that they say "trust your instincts," I know there are some proponents of FBT that advocate for that as a good thing but I agree with you - woefully inadequate. Nothing in my prior experience as a parent prepared me for this.
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KaitlynM
I can't say enough how much it has meant to me in the last 48 hours that i found everyone here...thanks Carrie for your wonderful book which lead me here...you folks all helped me stay sane for a very tough couple of days

today has been better...she clearly regrouped overnite and so far so good..of course, yesterday at this time we were ok...

i realize now that 19 days there was not many days...when they took her in they told us 30 days minimum...we hated that and frankly we got very in their face about getting her out... i feel foolish about it now, but i'm not going to beat myself up over it...  it was just me wanting my D back...

I am going to call CHOP for sure.  And it will be interesting to see about what our therapist at the day facility thinks about FBT...  the very next thing we'll do  is sit with our D and plan out meals for her...we'll pick meals from cookbooks and make sure she gets her exchanges...we'll plan them out to the half hour for the entire week and snacks too...rather than ask we'll offer 2 or 3 snacks...that way we can destress some of the in between periods...i can go shopping less and we can focus just on gettnig the meals in.

and i guess we'll have to just do better about making her comply...at the start i'll use what i learned here so far and see what happens...do i have it right that we just sit there until she eats?...i distract her and gently encourage her with short "you can do this" statements and no matter how long it takes we sit...what happens if we sit there for 3 hrs and now its snack time??

i think we need to get serious about $$ realities too...its one thing to say i'll break into savings for a couple more weeks at the center but now i know its likely to  be a longer timeframe...
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JangledUSA
KaitlynM wrote:
 

I'm grieving the loss of our innocence right now... We really let ourselves think it was "this easy"...i get it now...i have to take a breath and dig in...i have to take an attitude that i will never ever back down from saving my daughter, and last nite i started telling her that her ED has no chance to win...none... she responded nicely to that after a horrible day...



Your story is our story.....    The 2 times my daughter completed treatments we had a meeting with her treatment team before discharge and both times she received a good prognosis, ready to go to back to work, start college, etc. etc. etc.   She ate ok for a day or 2 but within a week she was sinking right back into active anorexia and we had no idea what to do.    In fact, everything we did was pretty much wrong.

You've got some great suggestions so far.   I will just add this - the fact that she did well in treatment bodes well for your attempt at FBT if you choose that route.    You know she'll eat under the right conditions - that's the big thing.   Your job is to create those conditions at your house.

Once we learned how to get our daughter to eat (taught by the folks at UCSD) there was a sense of euphoria that came knowing we didn't need to depend on anyone else to do it.   That's a big thing....
A dad.
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biomom
I agree with whoever mentioned UCSD above... if you have money for it (or maybe your insurance will cover?), the intensive week at UCSD might be money better spent. No matter how long she is at Renfrew, she will still have to leave and come home at some point, and I'm not convinced Renfrew provides the best return on investment esp. if you're paying out of pocket. http://eatingdisorders.ucsd.edu/patient/ift.shtml
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Onedayatatime_USA
Yes you sit there with her. I sat with my D for 3 hours over celery. At times I would feed her one spoonful at a time like a baby. For some reason me feeding her was easier for her.
Having fun in Tween Land.
DX--11 yrs 5 mons (5/12), WR--12 yrs(12/12)
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edbites
What helps ED kids eat the most are two major things. One is the simple expectation that they will eat. It goes a long way. Two is the fact that eating is non-negotiable. If you can't/won't eat what's in front of you in X amount of time, here are some supplements. If that doesn't work, there will be an NG tube. The sufferer can justify to their ED that it's not their fault, that someone is 'making' them eat. I think it's part of the reason that you see so much anger at the person doing most of the feeding: blaming you is how they justify eating, and the rage is a side effect of the fear and anxiety that they get as blowback.

Renfrew has clear policies about how to deal with uneaten food. Find out what they are and model those at home. Sometimes when sufferers feel that food is optional, they feel compelled to restrict. At Renfrew, the message was clear that not eating wasn't an option. It can be that way in your home, too. There's no reason why not. Before your Tuesday meeting, call the therapist and explain the changes you want to make and that you're looking for her backup. Do this without your daughter present so the both of you can present a united front. Also try and figure out what she's eating while she's at the day program so you know how much she needs to eat while she's home. I think this will really help make things more consistent.
Carrie Arnold Blogger and author at http://www.edbites.com
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gobsmacked_US
It's NOT too late. Our daughter was in a adolescent psychiatric unit for three weeks. Came out with a meal plan that she was supposed to follow herself (at 13!). We couldn't even find FBT near here, but with the help of this board, the book Help Your Teenager Beat an Eating Disorder, and some supportive clinicians (just not experienced in FBT), we were able to move to an FBT-inspired recovery.

I'm adding my voice to everyone else who says that if you can get yourself to the UCSD week, do it. It will save you time and money in the long run. I really, really wish we had done it in the beginning -- I didn't understand what a long haul this was going to be and how helpful it would be to have that under our belts. If someone else posted a link, I missed it, so here you are: http://eatingdisorders.ucsd.edu/patient/ift.shtml
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KaitlynM
I'm on the case!!! I just got the book you mentioned called help your teenager beat an eating disorder...amazon kindle is having a good couple of days with me!!..

i beleive my daughter is more likely to comply once we set the firm expectation
...i have always expressed confidence in her but i have not stood ground yet...i have to get strong and do that..

Yesterday it was her throwing the supplement over the edge of the table that started the spiral...
it made me say FINE!! and she ran upstairs..
ED 1 Family 0  LOL

Obviously we dont have a feeding tube in our house,
so i guess in the end we just pass out at the table and she eats when she wakes up..LOL...

That's a great idea to call the therapist to direct her instead of letting her direct us....i will do that.
her response will help me to judge whether she is the right person for us..

thank you all for paying it forward and being there for my daughter

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JangledUSA
How is she weight-wise?    Is she close to where she should be according to her growth chart?

One thing that *was* good about treatment was that we got our daughter back within striking distance of being weight restored saving us a lot of time and frustration that would have came from starting from 99 lbs....

She gained like.. 18 lbs in treatment.   I worked it out once and if I remember correctly it was about $4500 per pound but I guess it was worth it.....
A dad.
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perdido
But don't you think she should go to UCSD jangled?!?!? Worth it right!!!
Slow and steady
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perdido
Also, maybe not including her in meal planning. Some here have used a meal plan but others just use magic plate and serve up the meals.
I was at a thrift shop and found a tray and served the meals up on the tray for over a year. A couple of days ago d said, " wow, I haven't used the tray in a long time."
Dr. P., lucky you. Our FBT was 2 1/2 hours away and not Dr. P..
Structure for her, it's a big deal. Sleeping also, they need lots of sleep.
I will bump up the high calorie thread, it's awesome lots of good recipes.
You can do this. You take it until you make it!!!
Sometimes h and I lost it and said the wrong things, trust me LESS IS BETTER!!
Your d doesn't have insight and won't for a looooooonnnnggg time, nor does she need it. She just need empathy and love and support and food. She may balk at the love, hard to swallow, but IT GETS BETTER!!!!!!
Slow and steady
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JangledUSA
Perdido_USA wrote:
But don't you think she should go to UCSD jangled?!?!? Worth it right!!!


I just wrote this in another thread...  I think it is applicable to this one as well:

Well..  I think what the UCSD family week did for us was teach us how to get our daughter to eat when she was restricting.   

There was other stuff - contracting, DBT Lite, and some science but when we arrived my daughter was in the driver's seat when it came to eating.

When we left San Diego my wife and I could actually get her to eat when she refused.   I gush about it maybe too much but it was nothing short of a miracle.

It didn't fix her and there have been ups and downs but we haven't had to deal with a relapse since we went in March 2012.    And for cheap compared to treatment too.

p.s. And we also got rid of a godawful meal plan she was trapped in that week too.   That was *huge*.
 
A dad.
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jpqFL
Agreed on UCSD. We went last month and our d stayed another 2 weeks in day program. We are 1 week home and, while not perfect, we are improved significantly than before we left. I posted about our experience if you would like more detail.

The thing about UCSD that was so effective for us is that we all were able to spend dedicated time together, in a safe and supportive environment, with a focus on how we would transfer knowledge back to home.

The team kept our FBT therapist in the loop and we had our appointment scheduled to pick up upon our return.

I'd consider getting FBT support lined up at home, and plan for FBT boot camp at UCSD to get the family on the same page.

Best wishes!
“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think." Christopher Robin to Pooh
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