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

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amgm_CAN

My D was diagnosed Nov.2011 with RAN, hospitalized for 2 weeks, then re-fed at home.  Supposedly WR by March 2012.  But, weight has been dropping ever so slightly, never enough to alert the FBT, so that she is now 3 lbs lighter than in March.  FBT says its not enough to warrant concern – I say I am concerned because her state is far from ideal.  Since September she has experienced increased depression, increased anxiety, new self-harming behaviours, increased school anxiety to the point of not currently attending school.  The last month has been spent trying to attack this from an anxiety/depression standpoint including new psych and therapist and social workers (at the same hospital but not from the eating disorders unit).  No change.

All I can think is that I need to get another 3 – 5 lbs back on her.   I have no doctor or therapist willing to back me up on this.

So, questions for you all about re-re-feeding:

1) Does anybody have a list or a document that includes some quotes from doctors and/or studies about the last 5 lbs, or about BMI over 20 that is required for recovery.  Carrie’s book had a quote from a doctor here in Toronto talking about a 1 kg increase in weight can make a huge difference, but I think it was from an interview with him not a study (right now I cannot find it again in the book!)   Anything that I can use to help get someone on my side, or even, perhaps, get my D to see some light (I know, I know, I am asking for the moon and the stars)

2)  How do we approach a re-re-feed?  First time around it was straight out of the hospital, where she was started on Ensures, and then we just added meals, and kept the Ensures to help increase the weight quickly – and it worked! And also, the hospital scare really worked.  (She will not even be accepted into the day program right now, never mind in-patient)   I can do magic plate, but this time around she is even more resistant to fear foods like high-fat yogurt, margarine, ice cream, pasta.  I never previously hid fat in food, and I do not feel comfortable doing that. 

3) As someone said, bad therapy is worse than no therapy, and since we were pushed into Stage 2 by FBT, my D thinks she should have control over her food.  Has anyone just completely ditched the therapy, and just fed?  I am trusting this hospital less and less and we are basically in no man’s land between the eating disorder clinic and the youth mental health clinic!  (She was ditching lunch at the anxiety day program, and they said they cannot watch her at lunch!  She cannot attend the anxiety program if she is not eating, and she cannot attend the eating disorders clinic if she is not losing a significant amount of weight !!)

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AnnieK_USA
So sorry you are not getting back-up from your clinicians about this, amgm. It definitely is harder to put extra weight on without support from a team. Others here have done it on their own, and I expect they will chime in soon with their stories.

Regarding the info you asked about you could check F.E.A.S.T.'s main resources page, http://feast-ed.org/Resources.aspx, for links. The following two may be of special interest.

Research Papers & Academic Articles

Re-feeding Resources & Growth Charts 

Daughter age 28, restrictive anorexia (RAN) age 11-18, then alternating RAN with binge eating disorder and bulimia with laxatives, is in remission from EDs for 3 years after finally finding effective individual therapy. Treatment continues for comorbid disorders of anxiety, ADD and depression. "Perseverance, secret of all triumphs." Victor Hugo
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amgm_CAN
thank you for the reminder about the resource page, but also, I forgot to mention we never had historical growth charts due to a couple of changes in ped drs (I wish somebody told me back then to keep a chart!)

So, I actually do not even know how her team established that she was WR.
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Onedayatatime_USA
So sorry you are going through this again. In regards to past weights-- do you have any notes or statements from doc visits? I know in the US most doctors put the child's vitals on check out statements. If you do you might be able to piece something together.
Having fun in Tween Land.
DX--11 yrs 5 mons (5/12), WR--12 yrs(12/12)
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YogurtParfait_US
There are lots of folks here who have had to ditch stage 2 and go back to stage 1--me, Jangled, breathingmom... see breathingmom's thread "stepping out of stage 2".

I wouldn't let the FBT push through the stages. You know more than she does about your d's state.

Hang in there!

Sending warm support,
YP
"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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Iris_US
Trust your gut! We see similar things when my d's weight drops! I would tell her she needs your support because she was ditching lunches. If the FBT won't back you up, it's time to move on. That's what we ended up doing and I don't regret it. Our FBT was pushing for more independence right when our d was skipping lunch. Even my d is relieved we stopped going to her. With you providing support for all meals it will be easier to get the weight to where t needs to be.
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gobsmacked_US
Hi amgm. Sorry you're dealing with this.

Papyrus just had a thread about this. Turned out she did have the support of her professionals, after all, but the responses might be helpful to you:

http://www.aroundthedinnertable.org/post/professionals-dont-support-me-6136812

We had something similar (d didn't lose weight, but I felt she needed more), and I wrote about it in that thread.
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Iris_US
Just to be clear, if you can get your FBT on board with some more weight, all the better. try to work it out alone with her. It just didn't work for us. On the other hand, My d has a therapist (she had her throughout this) who has been very supportive of us. She has been the one to help me decide to take back independent eating when we needed to. She's not a FBT, but is very knowledgable about theMaudsley approach.
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amgm_CAN
Thanks all for the support and replies.

I am going to use the ditching lunches as a clear indicator of ED thoughts raging, and what do we do when ED is raging ... FEED!

I may try to get FBT on board, but perhaps not.  This needs to happen now, and we are still on Christmas break so I have some help from H.

I agree with forget about the stages, this is my D's recovery, and I am on the path with her, no matter what the path may look like.
Oh, and along with stages, school can take a hike too ... we need a healthy D!

(and I am digging through my baby/child files to find any weights that might fill in gaps)
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YogurtParfait_US
I totally support your decision.

At the end of November I informed our FBT that we were going to stay in Stage 1 until my daughter showed clear signs that she was doing better, and stop providing independence and then having to take it back.

She understood. No problem there.

FBT puts the parent in charge and knows parents know more about the child than they do. If your FBT is cranky about your decision, then that's her problem. If she can't recover from that ... well, you'll have learned something about her and might have some decisions to make.

YP
"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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YahtzeeUSA
I am in the U.S. so maybe Canada does not do this but our public school system has records of height and weight every year starting middle school (6th grade here) of all their students.  Perhaps you can check there for former #'s to chart?
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amgm_CAN
thank you for the support YP, you have reminded me that I have felt a little uncomfortable with this FBT since the summer, and in all honestly my D likes her other therapist (not FBT) much better, and that may be the indicator to use.

Yahtzee, in canada we do not have such records. 

Not only did we/family change ped drs twice, the ped dr associated with the eating disorder clinic has also changed since beginning of treatment, so yeah, there are the original notes, but a face-to-face with the original dr. would be helpful.

Just kickin' myself a little for not taking more notes about the WR weight at the beginning - like where it is set, and why.
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1997mom_CAN

I went back to a former family doctor in another city to get my d's records from birth to age 6. These were the most consistent weight records we had and did show us a consistent pattern. The doctor had to retrieve them from her archives, and it took over a month to get them, but they were really helpful. Is this something you could look into?

1997mom Ontario, Canada
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alwaysvigilantCAN

Has your FBT plotted her weights and heights (has she grown in height?) since starting treatment? We had only a couple of weights and heights as well from age 3 on so have done alot of guessing. I would definitely ask how they decided on the weight for her.  I would also point out that state is not good since: she has fear foods and she throws lunches away.
We moved back to a pseudo phase 1 with the blessing of our FBT as weight was not moving up and D just couldn't eat enough on her own.  The phases are there but every family has to go through them at their own pace.
I would regroup with your H. It sounds like you know what you need and want to do and perhaps you need to require the FBT and doctor to be on board as you are the one living with her and her ED. Does your centre have more than one FBT that they can have a meeting about your D? You may have to get pushy and go over your FBT's head (in a nice, calm manner of course

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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amgm_CAN
i am so sorry I did not reply back ... all of you have been so helpful and supportive, this is a wonderful environment to get the back-up we need (since not too many of my friends or family really understand this all!)
To top all this off this week, my Dad was hospitalized on Dec.31 with a heart attack. 
Wow, that sandwich is feeling full (sandwich generation!)

Anyhow, I have not talked with D yet about increasing calories and purposely upping weight - she has had full nutrition at the current level, no ditching, since she has been at home for 1.5 weeks, and even that has calmed her somewhat, a tiny bit, but it gives me a bit of hope, and that is all I need to keep pushing.

I got a bit of speed going this morning by making quite a number of phone calls to try to get everyone on the same page in regards to eating disorder people and mental health people.  Mostly just waiting for call backs, but at least the ball is rolling forward.

And my Dad was actually cracking jokes on the phone from his hospital bed this morning!
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