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

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kgard
We are nearing weight recovery, in that nebulous phase of "how much longer." MD said WR 4 lb ago when she reached 60%ile weight. I said no way and nutritionist agrees with me to keep going until menses returns. She was a 80-90%ile kid age 4-10 and low activity and overweight. At age 11 her growth curve started moving toward the 70s then took a nosedive at age 14. Do we have to get back to the 90th %ile? That's 160# on a 5'4" frame! I know recovery is more about state than weight. Can you recovered people tell me more aboit what "state" looked like when you said- ah, ok I think this is it?
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Torie
Hi kgard - My understanding is that you pick the weight you hope will be enough ... and then see what happens.  When truly wr, you should start seeing signs of improvement in state after a few weeks or perhaps months at the right weight.

Please keep us posted. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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BattyMatty_UK
It's really tricky to sit back and say "My child is now completely recovered". I don't think it can be as black and white as that. In my experience, there will be a number of 'loose ends' which will remain for some time and it may be just be a kind of feeling you have that things have come on hugely over the past x weeks / months - a kind of gradual process that is best measured by examining where s/he is now compared with where they were x months ago.

With us, the weight lagged behind, as did social interaction. Then it was just the weight that lagged behind, yet his brain was functioning very well due to a fully balanced and extremely healthy (for all the right reasons!) diet - he just needed more of it to push his weight up a little and to relax and accept that this was OK. Definitely a case of 'state not weight' until very recently.
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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mjkz
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With us, the weight lagged behind, as did social interaction. Then it was just the weight that lagged behind, yet his brain was functioning very well due to a fully balanced and extremely healthy (for all the right reasons!) diet - he just needed more of it to push his weight up a little and to relax and accept that this was OK. Definitely a case of 'state not weight' until very recently.


Yes!!!  Same here and I often feel like our experience has been backwards because so many need the weight to be higher and state lagged.  Thanks Batty Matty[thumb]
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EDAction
Hi kgard,

I think we are pretty close in terms of treatment phases.  I was asking the same questions you are at the beginning of the summer.  For what it's worth I'll share our experience.

D was back to the weight at which she last had her period and still hadn't gotten her period back.  MD gave her one 10 day course of Provera to test if her estrogen level was high enough to support having a period.  It was.  Her cycle started on it's own after that and has continued.

D is now 5 lbs above that weight.  D's state has been improving for the last 6 months (with a few blips), but the big difference now is that she laughs.   She smiles real smiles because she is enjoying herself and she laughs.  It is the most beautiful sound.  We still have work to do.  We are still working on fear foods, ED behaviors and slowly giving back independence, etc.  But it is SO much better.

Thinking of you.

 
DD diagnosed with anorexia at 14; FBT at home with the help of psychologist and medical dr; 3+ years later and doing well (knock on wood)
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kgard
Thanks all. Keep the stories coming! EDAction, your story is helpful. I love the sound of Ds laugh. I heard it last night. I guess maybe we are never "done" she will always have to eat 6 times a day and differently than her peers. That's hard.
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EDAction
Hi kgard,

From the stories I've read on this forum it takes SO MUCH LONGER than we initially think it will to get our kids back to independent intuitive eating.  I've read the stories of many who say it took 2-3 years after WR.  And yes, I think it is something our dear Ds will always have to be vigilant about.  They can't skip meals, etc, like others can.  But if we can get them to a point where they can take care of themselves independently and know to ask for help if they need it, isn't that success?  We'll always be in the background watching out for them . . . but we would be anyways, right?

In this "Phase 2" I've found that I feel good when things are going well and I see signs of improvement and then when we have a setback - even a relatively minor one - I can pretty easily feel quite down.  I hop onto the downward spiral of thoughts . . . what did I do wrong?  not fair that life is easier for other kids!  when will this end?  our family life has been hijacked! etc etc.  It's helped me to start keeping a daily log again. (I did this in the intense refeeding part, but then stopped and it felt good to stop at the time!)  I keep track of food, signs of improvement and setbacks.  It's helped me to see that there is more good than bad and that the setbacks are further and further apart and usually of shorter duration/less intensity.  

I'm so glad that your D is laughing!  Warms a mother's heart . . . doesn't it?

What does MD say about the fact that her period has not returned?  
DD diagnosed with anorexia at 14; FBT at home with the help of psychologist and medical dr; 3+ years later and doing well (knock on wood)
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BattyMatty_UK
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I'm so glad that your D is laughing!  Warms a mother's heart . . . doesn't it?
Yes! With us, it was my son singing at the top of his voice!
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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kgard
EDAction: I think I will go back to the daily log too to help me see the positives. MD not taking action yet on her period, says it can take a long time to return. Nutr (who I think is sometimes more savvy than the Adolescent Specialist MD ) says keep gaining and if she has a plateau week- add another fat serving.
She eats the volume she is supposed to at home but not so good on the variety- that is coming more slowly. Tomorrow she wants to be independent all day into the evening. And I just know there will not be enough food around to meet her needs. She says- "how will I learn to do this on my own if you don't let me try." True- but a pilot doesn't take off in a plane without a flight plan and reporting in to the air traffic tower to prevent crash landings!
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EDAction
Hi kgard,

Is tomorrow/was today a special day?  Was there some special event/outing such that your D wanted to be independent all day?  When we've come upon such events that we want D to be able to participate in we give her breakfast before she leaves, make sure she takes lunch and a snack if they won't be available where she's going and have her eat dinner or at least evening snack with us when she gets home.

As far as independence goes . . . our D eats lunch at school independently and gets to choose a couple times a week when she can eat a snack or a meal with a friend.  When she chooses to use one of those times I ask her about where they are going to eat, what she will get, etc.  The purpose is to make sure she thought about it and has a plan.   These are very short conversations which make her bristle.  Afterwards I find a time to ask her what she ate.  Again, it's quick and painful.  Often when she goes out w/a friend she eats before she goes.  I have a few meals that I can make quickly, that I know meet the requirements, and always have the ingredients on hand (chicken & cheese quesadilla, scrambled eggs, grilled cheese sandwich, plus sides and milk).  So if it's Friday after school and a plan to see a friend comes up quickly I am ready to feed her before she goes, even if the rest of us are going out for dinner.  Recently she's pushed for another step toward independence.  So she is making her own breakfast once a week.  We are still in the kitchen, but she makes it.

We are working on adding variety too.
DD diagnosed with anorexia at 14; FBT at home with the help of psychologist and medical dr; 3+ years later and doing well (knock on wood)
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Boysmum
Hi, we are coming up to the 1 yr mark of weight restoration. My son is now 10kg above the weight restoration target which he reached in December last year. He is now recovered to a large extent but it has been a very gradual process and accompanied by weekly therapy and Prozac. He's now at the stage where he will ask when a meal is ready, he will tell me if he didn't eat something and say he needs a snack instead (if he didn't like something in his lunch for instance), he can eat independently with friends without me needing to have independent verification from friends. This has just occurred in the last month.
He can now eat independently at school - we've just reduced supervision from 3 times a week to twice a week. However he has still to admit he feels hungry if he asks what time a meal is and I say soon, are you hungry, he will not yet say yes.
He is much, much happier, but his state is still very easily knocked - e.g. His learning mentor at school phoned me just 2 weeks ago when she was concerned that he seemed very stressed in lessons, it was after he was nearly hit by a speeding car (thankfully it hit a parked car rather than the boys who were walking home!). I have to say after that event it was the first time he hasn't looked to reduce his food intake as a way to cope with a stressful event. Even just a few months ago he would/did.
I think that school and us are now waiting to see how he will cope with the exams in February and picking his subjects for GCSE's. The last exams in the summer was the first time he self harmed (hence he now has a learning mentor and an exit card for lessons if he ever feels stressed again).
I'm sorry I can't say that it's quicker than it was, and that it has been without speed bumps and needing lots of support - not a quick back to normal at all like I was hoping!
13 yr old son diagnosed April 2015 with Anorexia.
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mjkz
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From the stories I've read on this forum it takes SO MUCH LONGER than we initially think it will to get our kids back to independent intuitive eating. 


Recovery for some kids/YA can look very different.  If my daughter did "intuitive eating", she'd lose weight and be back in a hospital in a matter of a few months.  For whatever reason she can't go by whether she is hungry or not because she still says she never gets hungry. For her a sign that she should eat is that her blood sugar is dangerous low, she can't get warm anymore, she is yawning constantly, can't concentrate, fingers turn blue!!  She knows what each meal should look like in terms of what food groups, etc.  She knows too to always take more than she thinks she needs and to eat frequently. 
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anotherbite_CAN
We returned to 85%-ile and tried to maintain that for some time.  Recovery...true recovery, marked by intuitive eating and self-maintanence took years.  I would say 3 years in I felt that she was in a firm recovery.  We fed though high growth years though (11-15) and were constantly chasing growth spurts.  My d is now 16 (dx just before her 11th bday) and she has dropped some weight (no longer 85th percentile) and maintained good state.  HOWEVER, the drop in weight came after a good year of easy recovery.  I would say we were in recovery even before she was eating intuitively.  That took time and I let it take time.  We were not 'recovered' at goal weight.  It took continued high calories to keep the weight on (a good 6 months of continuing to feed for growth post w/r).  It took longer for the anxiety and secondary (non food related) symptoms to dissipate.  So, don't worry too much if you are still seeing symptoms post w/r.  There is a theory that the body has a set point and will resettle once it reaches there.  

Initially a recovered state looked like 'no resistance' to eating.  She wouldn't eat intuitively but she didn't resist my monitoring, nor, did she resist adding extra or high palatable foods.  It also looked like a lessening of general anxiety.  My girl's perfectionism was off the charts when ill....with recovery we saw that recede tremendously.  In fact, that is a 'tell' for us (an uptick in worry about school work or what friends may be thinking about her) more so than eating symptoms.  A return of her sense of humour was a huge piece of recovery.  An ease with herself and the world.  A return of our relationship.  A sense that the kid I knew before ed was back.  Those were all  hallmarks.  There is some research that says that it takes a good 6 months to year post w/r for brain healing.  I will try to find and post.  I know that J. Locke has stated that stat.  

I would say, don't worry too much about the number at the moment.  You  have another marker...menses.  Keep feeding till that returns at least and then see where you are.  

I know it is a conundrum with kids who trend in the higher percentiles (I say this as a mother of a 85-90%-ile kid) but, you are still in the realm of 'state' guiding you....a good state is resumption and maintenance of menses.  If that is not happening...keep feeding.  The numbers can be daunting so....go by the other markers of health. 

Good job! on the refeeding, mama!!!! 


D dx at 10 years old in June 2011. She is now 16 and happy and healthy.  We were IP for 8 weeks and then refed at home for what felt like forever.  We chased vertical growth for years...as is typical for the age.
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momupnorth
Not sure if I would consider my d recovered yet but she is well on her way.  she eats all we offer though is not yet any where near intuitive about it.  she gets her own snacks with supervision (she would not do this if not told to). She asks when dinner is, what we are having and if she should have snack, alps asks for her nightly meds (which I feel is her way of asking for snack as she always has these with a snack). Her weight is excellent and her state of mind is much better than it was 6 months ago.  we are still dealing with some anxiety.  she is refusing therapy so helping with the anxiety is tough.  she does see a psychiatrist and takes meds which does help but totally refuses any type of therapy. We hope to get her back into it with some gentle persuasion. Overall, we are doing well and o know recovery is on the horizon.
Mom Up North
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