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

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Bonita

This site has been very helpful the past few months during refeeding - thank you to all who contribute.  I feel a bit stuck right now, so thought I’d share my story and get some thoughts on next steps and some questions I have.

DD (13) was diagnosed in Nov 2018 after not gaining any weight over the course of a year and then losing quickly.  She was over committed with various sports and since starting middle school I was not monitoring her food intake.  Too much weight was lost due to sports, which triggered the ED.  The good news is that we think it was caught early, and I was able to find some good resources to help here in the US. I worked closely with a nutritionist and we put a plan into action.  After diligently feeding 6x per day, she was within her target range by the end of Feb 2019.  We decided to rip off the band aid and took an aggressive approach, sometimes gaining 3 lbs per week.  It was not easy (to put it lightly), but we got there with lots of support from our team and my husband, who did a lot of the cooking. She stopped all sports for several months and then we let her slowly start back up again just recetly.  She has been weight restored for almost 6 months now.  We think she has also recovered mentally, but she does have some weird eating habits left over from ED, which leads to my question. 

Her weird eating habits are things like, not eating her bread and sandwiches properly (always left with edges at the end even tho I cut off the crust), salad dressing dripping from her mouth (mind you, I do load it up with full fat dressing!), constantly still complains that she is full all of the time, asks if she can have less food (most meals), always picks the least calorie item if I let her pick something out, doesn’t sit down much except when she is eating meals.  Overall, she is happy and back to her old self, but I know she isn’t there 100%.  My question is, how can we get rid of these remnants that ED has left behind?  How much longer will it take?  In addition, she is only 13, and has only grown half and inch in the last 9 months.  When will she need to gain more?  After she grows or before?  Note that she is within her weight range currently based on her growth charts.  I have asked these questions of her team, but I can’t seem to get a straight answer.  Please help me get rid of ED 100% and keep it away for good!

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scaredmom
Hi there, 
You have done a great job getting the weight on! It is not easy, I so agree with you. 
I guess the questions I have for you about theses behaviours is if they were not there prior to ED then they are likely ED and would ensure, like you did with refeeding that she finish the sandwich in its entirety. The feeling full even after 7 months of WR is common as well as trying to eat less. It does take a really long time. At one year WR my d (almost 12 at diagnosis) was eating really well, however there are still bumps in the road. She still does try to restrict as "the other girls eat less than me" so I have to keep pushing and reminding her that she is different than the other girls. She may need to gain weight. It depends on where she is with respect to her historical growth curve and if she is still able to stay there or even above it. You write "weight range" is that for her own growth or just the population growth?

I wish WR was the end of it all. Alas, it is not and there is so much more after that, that I have found. To ensure proper nutrition everyday and work on the anxiety and helping her learn how to eat is a lot of work. 

Does she yet have her periods? If not she may need a more weight and time.
All the best, I am glad you have posted. You are doing a great job!
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)
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scaredmom

Just wanted to add, that I have noticed that there is no one way. Some have found these behaviours got better with more time, and others had to work hard to extinguish the behaviours. We had both. For exercise, we had to work hard. For some fear foods, they just came in time.
As for her growth, they grow out then up. She may need more weight, and if not she still may need high calories to keep up on her curve. We found that at 4000-5000 cal per day weight gain was good then at WR + 10 kg she still needs 3500-4000 per day to keep up. 
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)
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Ronson
I would just keep calling her out on all the behaviours and comments. If it wasn’t there before Ed it’s probably Ed chat. Unfortunately the behaviours and comments still pop up some time down the line.  Call them out for what they are - that’s an Ed behaviour/comment, you didn’t say that before the illness, I expect you to eat it.  And then move on.  It lasts a long time - but it needs to be addressed or they stay. 
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Mamaroo
You've done a great job, well done!

Here is a post on constant standing:
https://www.aroundthedinnertable.org/post/standing-8318738?pid=1294036004

Debra's d also stood a lot, maybe look up her posts as well.

My d keeps on leaving lasts bits of food on the plate and I need to constantly remind her to clean her plate, it is an ongoing battle. Mind you my other d does it as well, but it's not so triggering for me. Maybe leave the crusts on the bread next time, would save you some time as well.

She needs to gain more weight before she grows, so just keep on feeding, you've got this!
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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debra18
Yes my daughter stood all the time and than one day it stopped like she never stood at all. Most behaviors did stop on their own but the more severe ones I had to intervene with. I caught her hiding food again and had to increase supervision again. Did you read Eva Musbys book? She talks about stopping behaviors and how to keep kids on their growth curve. When my daughter reached a good weight I stopped weighing her but kept on feeding. I saw now in the summer she seemed to regress and increase behaviors so I increased calories again. Is your daughter eating enough to be in her sport? I saw with my daughter in the summer it is hard to keep up with the calories she needs just from basic activities like swimming in camp. Unfortunately, many professionals set target weights too low, and tell kids to go back to sports and cut back calories too quickly. All things to look out for. Yes, essentially to recover completely your daughter needs to stop all ED behaviors.
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tina72
I can only say the same as the others, here most ED behaviour stopped slowly after about 6 months after WR and some left behaviour we need to work on because it did not stop eventually.

I also want to add that many patients need to overshoot their former weight range for some time and that here target weight set by the professionals was too low too and my d needed only 2 kg more to see a big change in behaviour.
So maybe worth a try to add a bit more weight and see what happens. If she is only 13 there is no target weight anyway and she has go gain until her mid twenties.

To answer your questions:
- work on that behaviour that is left, ask her to eat "normal" for example (they all want to be normal) or think about what you can do to make this behaviour impossible (for example incentives for finsihed plates without leftovers or for sitting down)
- get more weight on
- most kids gain first and grow then

You did a really good job up to now and I can understand that you want to get rid of it totally now. My d is back to 90% normal and I also want to get rid of the left 10% ED.
Keep feeding. There is light at the end of the tunnel.
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debra18
You can also avoid some things like not using crusted bread. Use bagels or rolls instead.
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Bonita
Thanks everyone for your VERY helpful responses!  To clarify a few things:

-The weight range was based on her own personal growth charts.  When her initial range was set by professionals, we thought it was too high, but now realized that it was just right for her.  Now that she's been at that range for several months, it likely needs to go up again since she's still growing. although very slowly.  She has not had her period yet (ever), so that is something we are working towards as well.
-I do tell her to eat normal, and she truly believes that she is, but she is clearly not.  I had to demonstrate to her last week how to properly eat a sandwich bite by bite.  She's slowly getting there, but sometimes just lose my patience and fly off the handle.
-She finished her breakfast this morning, except for the almonds in her cereal and I told her that she didn't have to eat it them because we needed to get out of the house and I was late for work.  UGGGGHH.  Now I wish I had just stuck to my guns and made her eat the almonds too.  

I'm going to get the Eva Musby book today as there's always more to learn with this terrible illness.  I was hoping that we'd almost be done once WR for several months, but seems like there's still a lot of work ahead of us.  I'm going to take it one day at a time, one meal at a time and continue to educate myself.  That's all I can do.  
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debra18
Is she being supervised while you are at work? Yes she should be continuing to gain weight for the next few years. And yes it takes a long time. 
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tina72
Bonita wrote:

-The weight range was based on her own personal growth charts.  When her initial range was set by professionals, we thought it was too high, but now realized that it was just right for her. 


Even if her weight range is based on her personal growth charts some need to overshoot that. I would give it a try to add a few pounds and see what happens.
We say "state, not weight" here. Weight is only a number. State and behaviour is important. Feed her until her state is normal again. Here it was really only 2 kg more and her state changed significantly.
Keep feeding. There is light at the end of the tunnel.
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scaredmom
This is a good book too.
https://www.amazon.com/When-Your-Teen-Eating-Disorder/dp/1684030439

And here is a good video
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)
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scaredmom
We had standing all day long.
From waking to bedtime we could not get her to sit. 
Here is what we did:
https://www.aroundthedinnertable.org/post/trying-to-get-her-to-sit-8528651?pid=1296348023
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)
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Foodsupport_AUS
You mention that she is 13 and no period yet. She should be at a rapid growth phase of her life so she should be piling on weight as well as growing rapidly. It sounds as though she may be quite behind in her weight again if she has not gained much in six months. Average weight gain at this stage is around 5kg /10lbs per year - see growth charts, but some are gaining even more rapidly at certain times. It is common for kids with ED's to miss a lot of those signals which cause normal teens to eat their parents out of house and home. Hopefully getting that weight on will get things right on track for you. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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scaredmom

Hi Bonita,
Just reaching out. How is it going?

XXX

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)
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EASL
Bonita:

First - congratulations - on identifying the problem early and being so diligent to get so far so fast. This disease is so sneaky and you've done an amazing job boxing it in and protecting your daughter. Lead with that thought every day - you are the fighter and you are doing it!

Your situation sounds so similar to mine - my D was 14 at diagnosis, period had stopped, had lost a lot of weight over a few months and was very active. Now 8 months later she is WR (both according to the doctor's set target (which was too low) and my target which was higher). However - she is not fully recovered and I say that because, like your daughter, she still has odd eating habits and also because if one day is lower calorie than another (by even 200) we see mood issues. Some folks on this discussion chain pointed me to this blog - which I found very helpful and you might as well:

http://www.blog.drsarahravin.com/eating-disorders/after-weight-restoration-envisioning-recovery/

My husband and I have set a "target date" for recovery of over a year from now - because - just like muscles atrophy and need a long time to regain strength and flexibility - so too the mind. We believe (and hope) that after a year of above average weight and continued calories our daughter may have actually kicked AN out of her life. Our analogy with our daughter is its a lot like Diabetes - its always there and it must be 'managed' - but I don't think  your daughter is ready yet to manage - she still needs you. I feel like you and I are similar in our hope for recovery and our belief in our daughters to just get on and do it - I have to constantly remind myself that this is the slowest process I may ever come up against and when I want to speed up - I'm leaving a "hole" for AN to sneak back in - better to just plod along, high calorie day after high calorie day and watch the weird eating slip away, the ability to choose wisely come in, the potential of snacking on demand to reappear and my daughter to really have control over her illness - again, this is my hope for 14 months from now.

Keep fighting and doing all the great things you are doing!! 
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sk8r31
It's great to hold a vision of what your lives will look like a year from now...that is great to hang on to!  I totally believe in your vision.
However, it's likely you will need to keep a 'weather eye' on things for the long haul.  Times of stress or transition (new school, new job, major life events...marriage, etc) can be vulnerable times for those who have experienced an ED.  Not saying your d will necessarily have difficulty, but it's good to be aware that transition times can be a bit tricky.  Even after several years of strong recovery, I pay closer attention to my d during stressful exam time or the start of a new program or job.
Sending warm support to you, & congrats for all your hard, hard work in moving your d forward.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Bonita
Thank you all for your kind responses and advise.  We have decided to have her gain another 5 pounds and see if things improve.  She is ok with putting on the extra weight but requested that we not do it so quickly as it makes her feel too uncomfortable.  I realize this process is a marathon, but I do try to rush it and hope that it will be over sooner as we are all so tired of the whole damn thing.  I'm exhausted and lose my cool so easily.  I am getting help for myself as this has drained me completely, but it's so worth the effort as I won't back down until D is 100% recovered.  She is doing much better than she was 6 months ago and hopefully the additional weight will help.  I feel like there is so much about this illness to learn.  I thought I had educated myself a lot, but then every time we reach a milestone, there is another one to reach that I wasn't aware of.  We will keep going!

One more question: Does anyone have a good resource for determining target weights?  I think we have done it correctly, but I want to be 100% sure we are going out this correctly.  
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scaredmom

HI Bonita, 
So nice to hear she is doing better and that you will get some more weight on her. I do not feel that is at all harmful. She may be uncomfortable whether she gains fast or slow, so I would suggest that faster is better and the discomfort will be gone faster. I hope that makes sense.
We do talk about marathons vs sprints, but it is not about winning the race, it is finishing the race at your own pace. So yes it takes so much time. 
Of course you are exhausted and glad you are getting your own support. 
I also think about this journey like mountain climbing. There are so many switchbacks and you cannot see around the corner all the time, so you need to keep up your guard for any new situations that come up. It is hard to keep vigilant and on top of ED, but you have come so far already. You are armed for battle.

As for target weights one usually tries to get the child to their historical percentile for weight or even a bit higher and keep them there while gaining appropriately to stay on the curve. 
And a child does not have a target weight, they grow into their 20's. 

Here is a good video:

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)
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scaredmom
Here is another link
https://anorexiafamily.com/target-weight-individualized-vs-bmi-eating-disorder/
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)
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Foodsupport_AUS
Great idea on getting her to gain some more. She will also at 13 need to be gaining for next year as well, and all of her growth to come. Since she has not started periods there really is no such thing as weight restoration or target weight. She needs to be eating enough that she is continuing to grow up and out and getting her period. For most teens (healthy) that is a lot of food, for those with ED it is probably even more. I would caution against, five more pounds and then stop. It should be much more about five pounds at a time, and then some more, and some more. ED is not going to like that, but if she has not gained in seven months she has effectively lost weight as a teen. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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Mamaroo
Here is a weight to height curve:

growth-2-20-girls.png 
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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tina72
I would like to say forget ALL target weights and numbers and go for state, not weight. Whatever number you will find out might not be correct for your ds case.
Keep feeding. There is light at the end of the tunnel.
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