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rose08

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Reply with quote  #1 
Hi everyone, quick background, 12 year old D diagnosed with anorexia about 5 months ago, so still early days for us.  Started re-feeding at home, most awful experience but somehow we got through the first weeks / months of absolute hell, I wont say unscathed, but we are still here to tell the tale [smile].  My D is seen weekly by a GP, psychologist and soon to include a psychiatrist as she is now on medication after some really hair-raising dangerous behaviors taking place, along with suicidal thinking.  She is still not weight restored but looking a whole lot better, and her behavior / interaction with family and friends is vastly improved and in general she just seems more "connected" to the world, if this makes sense?  Her weight gain is slow but steady with a few plateaus here and there and we make adjustments accordingly. I opted out of having a dietitian on the team as the ones I spoke with just stressed me out before they even got started... 

So we are now in this new "normal" which is still obviously NOT normal but just looks and acts more normal and if you didn't know her you probably would think she's just really picky / quirky about food, health conscious, wants to save the planet along with all the animals "we should not be eating", with a willowy figure now that the obvious gauntness has gone.
But, its there.  The constant clock watching re meals and snacks... I struggle to understand this - the schedule is EVERYTHING to her...does it give her a sense of security knowing what and when?  Is this something to be encouraged or to be challenged, or will it melt away on its own with adequate WR? 

The vehemence against sweets, cakes and ice-creams - however she will suggest new additions to her diet and happily try new varieties of nut / granola bars, new smoothies / breakfast muffins etc.  Her diet includes all the food groups (we have taken bacon off the menu and meat on the bone, but chicken, beef, lamb and fish are still served) and plenty of carbs (rice, potatoes, corn etc) and fats - but ask her to eat an ice-cream or chips and ITS THERE.  I know its early days, do I wait some more, get some more weight on her and then wage a war over this or is this non-inclusion of certain foods a part of what her recovery could be?  How much give, and how much take?

I have read many articles saying not to expect someone with anorexia's diet to go back to what it was before, it could, but it also could not, and if adequate nutrition is being gotten and weight is healthy then that is "recovered".  I just don't know what to expect.  I do know this disease is generally long term, minimum 3 years, and for some 10 plus and a life-long challenge. What ever path we set out on I need to make sure it is one she can take into adulthood.  I loose sleep over this most nights, over-thinking and wondering if we are doing it right, what should we be doing better? I see my daughter more and more these days, I hear her laugh and see her join in and try... no sweets, ice-creams or cake in sight.  What does your child's ED journey to recovery look like? Or, if recovered - what does it look like now? xx
BattyMatty_UK

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Reply with quote  #2 

Hello Rose, Thank you for posting this excellent question.

Quote:
I have read many articles saying not to expect someone with anorexia's diet to go back to what it was before, it could, but it also could not, and if adequate nutrition is being gotten and weight is healthy then that is "recovered".


In my opinion and many members of this forum, clinicians, etc, this doesn't add up to recovery. We were told things like "some people choose to remain at a low weight because it's easier for them to cope with" (treatment nurse) and - from our psych - "I'm happy to settle for 'good enough' if you are" (talking to my son).

Getting weight restored, or near to weight restored, is often just part of the recovery journey and not the end of it. When our psych said the "settle for good enough" stuff I immediately reacted with - well I'm not happy to settle for good enough, only full and complete recovery on every front: weight, behaviour, eating habits and so on.

Why would we not want our much-loved children to recover 100%? Look at it this way... With other illnesses when recovery IS possible (e.g. some cancers), then we'd never in a million years stop short of the finish line when we've worked so damn hard to get our loved ones this far. We'd persevere until they were in complete remission.

My son fell sick with AN in 2009. By around 2013 he was doing really well on the recovery front but I always knew that he wasn't there yet. I always said "My son is 95% recovered". It took until quite recently for me to look at him and feel, yes, he is recovered. Seeing him eating properly, regularly and healthily and seeing him back to his happy former self is what I was aiming at when our psych said "good enough".

I know it's been a punishingly tough journey for you so far, Rose, but please do persevere - your D will get there, she really will, and we are around to support you. Please do post anything that's niggling you and the parents here will come to the rescue! Don't give up at this stage. One day your D will tell you that she depended on you to fight her corner, just like my son did when he said to me "Thank you for being the one who never gave up".

I hope this helps?

xxxxx


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Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
Torie

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Reply with quote  #3 
I agree with Bev.  Your d needs to get back to eating everything she used to eat.  The path to get there is up to you, but I strongly urge you to adopt this as the final destination.

You're doing great!!!  Keep going.  xx

-Torie

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HateEDwithApassion

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Reply with quote  #4 
I just attended three days of sessions on anorexia by some of the best doctors and clinicians in the world - literally. Their mantra - to normalize eating, period.  So, if that means there are fear foods, that's not normal. We don't fear foods. If it's cutting it up in little pieces - not normal. The world doesn't do that. If it's using tons of condiments to drown the taste of a food - not normal. 

If it's a food your child ate before the ED, then not eating it is not normalized eating, hence ED behavior. I'm not advising the process to doing that since every family is different in tackling fear foods, variety, etc. but just wanted to chime in that restricting of any kind due to a food being "off limits" is a part of the disorder that eventually should be addressed. Sounds like you are doing a great job so far!






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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
rose08

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Reply with quote  #5 
Thanks to everyone that has replied so far, and so quickly.  My D was an adventurous eater before this, and luckily seems to still have that going for her, albeit in a "sustainable, whole foods, no junk" mindset. Its taken some doing, but the 3 meals, 3 snacks and 2 smoothies are generally well tolerated (with encouragement and some grumbles, and more recently, no tears) and her school lunches are going well.  Re her wanting to be a vegetarian, it was there from when she was much younger and she is not the first in the family, so it could very well be a prior trait...but one we are not prepared to allow until she is much, much further into a sustainable recovery and probably only years from now, if ever. She does bring it up Every Single Day though.

As to sweets and treats,  she loved them all.  Ate them happily and with gusto.  
So how?  How do I approach this rationally to a completely irrational mind which is actually making a pretty rational sounding argument - if she was a non ED - regarding junk food. "Why are you trying to make me eat junk food / sugary food etc when you know it is unhealthy? You cannot force me to eat junk food" I have said something along the lines of this is not a typical situation and any time a previously eaten / LOVED food can reduce someone to a rage, tears or meltdown is a huge red flag for eating disordered behavior and needs to be addressed etc etc but as you know, arguing with an ED is futile... 

So.  Best tips and practices please. What worked for you?  I know each and every family is different, and in ours we do have a much younger sibling who needed therapy after the first few torrid months and more recent ED meltdowns.  My head says to leave it be while she is gaining, that there is some healing taking place as she is more in the world again, get the weight on her and then only try push the fear foods so we have some room to maneuver. My heart says not to wait too long as it may just get harder? Does it get harder? Or does it not make a difference? 
Her dangerous behavior (trying to escape out a- moving car) was over the thought and discussion of a fear food that I had bought and is one of the the reasons we are now needing to see a psychiatrist for impulse control and medication. So its a big, scary deal for her an us, and one that I need an iron clad plan for if we intend to go after it. The last time could have seriously injured or killed her, which still scares me half to death. The professionals, as some of you have mentioned, seem to think her diet is OK, even great - its varied, healthy and nutritious, and she IS eating now and is doing much better.

We see the psychiatrist the first time this week, any advice on what to expect? My biggest worry is that what we are doing at home is going to be undermined, or I am going to mention re-feeding being the priority and be met with a blank stare. FBT or Maudsley is not at all well known here, the first my GP had heard of it was from me and what I had found out online...

Thank you all once again, this forum has been a rock through-out and has been such a support to me. xx



EC_Mom

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Reply with quote  #6 
Rose, congratulations on your huge, huge progress. You should be rejoicing every day that is not a disaster! Weight gain and varied food is fabulous.

Your d is 12, so you are in the fortunate position of being in charge of her life. Much easier in some ways than parents with older RAN kids. Here are my ideas:

1. You should speak to the psychiatrist before s/he speaks to your d. Absolutely. Because as you know, s/he could undermine you and it's not ok!! If you decide the psych is not going to be helpful, consider switching or abandoning that plan. I might be wrong, but reading on here for 2 years now I believe that MOST psychiatrists people on this forum have met with who are not FBT specialized have been unhelpful or detrimental. That INCLUDES psychiatrists who claim to be ED specialists. If I'm wrong, others, please speak up.

2. It is hard to know sometimes when it is better to push a fear food and when to hold off. If your d seems much better it might be worth trying. Not a big deal, not negotiating, just presenting it. Or scaffolding it: From yogurt to frozen yogurt? Or from popcorn to baked potato chips to regular ones? And yes, the goal is to "be normal". "It's not normal for a 12-yr-old never to eat chips." Or "normal means once in awhile having some candy". 

Obviously if she reacts in a self-harming way then you need to stop the self-harm, but maybe there comes a point where you also do support her through the fear food. Like she can take 1 bite and then eat a plain yogurt thereafter.  It is really you figuring out what works in your situation. 

My d, after many many required recovery milkshakes, said she hated them and would never have another. And much after recovery she had a freakout when I tasted her frothy coffee drink and stupidly said, "Mmmm, milkshake!" Recently when I texted her what she had with a friend while out, she texted "Milkshake" and a little smiley. 

One of the hard things about parenting through ED recovery is deciding when to push things forward and when to ride with a calm phase. My own instinct would be not to ride much for very long, to always incorporate new challenges in at least tiny increments.

And forget anything about "good enough"! Your d can be TOTALLY recovered. Knock on wood, my d grabs candy, asks for seconds, demands dessert, all kinds of normal things. You are in the perfect FBT position, with a 12-yr-old and already making huge progress. Cheering for you!
mjkz

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Reply with quote  #7 
I totally agree with everyone else. Time to break the schedule and serve her all the foods she once ate.  The sooner you do it, the better.  Some on here have taken a slower approach but with my daughter, I just started serving her everything she ate before right from the start.  I did not ask her to eat things she didn't like before ED (i.e. she has always hated peas-she is lactose intolerant and so diet had to be adjusted accordingly).  They are so anxious over every single little thing that it seemed to me that drawing things out just added to the torture.

I also found my daughter very reliant on the clock so I varied meal times and snack times but 10-15 minutes either way on a regular basis.
mamabear

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Reply with quote  #8 
Hi there. Here's my 2 cents.

My D got sick at 9/10. And it was hell on Earth for a long time. Now at 17 she is applying to colleges and is Presudent of the Equality club and is an activist etc. She is completely 100 percent recovered. So what does that mean?

It means she eats completely independently and intuitively. It means she eats freely. She doesn't eat red meat ( we never have). She eats anything and everything else. She makes cookies at 1 am with her bestie. She asks to try multiple desserts at restaurants after dinner. She says fat free things are tasteless and gross. She has gained weight on her own over the past 3.5 years now appropriate for age. It means- she is free of her ED. Does she have " thoughts"? She tells me " I don't really think it's any different than a normal person anymore. You know, I feel gross before my period. Sometimes I just am not feeling super beautiful. But that's normal." In fact- she's WAY less preoccupied with her weight and body than the vast majority of her peers who have not battled an eating disorder. She has a maturity far beyond her age.

My d has told me a lot about how her ED worked. As far as the clock stuff- my D was also obsessed. And many years down the line told me the reason was because she was HUNGRY and knew that she would " get to eat" because we " made her" . Of course her ED made her argue and scream and the whole 9. But D knew we were going to stay with her until it was eaten.

And I found that any foods my D begged NOT to have were the ones SHE wanted the most. I am famous for my fries story. We planned to go to a restaurant and D was absolutely begging and pleading " anything but fries" .... so I ordered her fries. And I had to learn to speak this weird language that was often reverse psychology.

We ripped off the bandaid. If she ate it pre- ed then it was on the menu.

A friend of mine has a recovered older daughter who now says she wishes she would have done that- because doing fear foods later was like fighting it all over again... why not go through the hell once?

So no- I would NEVER settle for " good enough" in a 12 year old kid ( or anyone).
Your daughter is in the biggest period of growth and change of her life other than infancy. Feed her through this. High cals. Fats. Fear foods. The goal is " normal". And yes- you are still in the early days. It took us a solid 3 years plus.... and it's freaking beautiful on the other side❤️

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toothfairy

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Reply with quote  #9 
Hi there,
I advise you to go through mamabears historical posts, as you will see how this is a marathon and not a sprint, particularly with a 12 year old. She is going to need a lot of support for many many years to get her into full recovery and keep her there.....

For us. My Son is in what I would call "strong recovery" ,note -not recovered or in remission...IMHO.

At this point in time, My Son will eat ANYTHING that I serve him. From French fries to the most luscious calorie laden cake that you can find. He will eat it with no problem at all.

Fear foods were served from day one. It is difficult but it is so worth it.

I believe in recovery - FULL recovery. Full recovery is as Mamabear describes her D .....

Part recovered , as you describe above is a very common outcome......

My Son still needs a huge amount of calories too keep him in his recovery. He needs over 4000 cals per day. Every day. I still add butter and cream to his food.
Here is what things look like for us ( note with an older teen )...
He gets his own breakfast, We eat together, he will get himself a good hearty breakfast with no problem. I make school lunch or lunch at home. No problem there. He will have an afternoon snack, he will ask whats available and will ask for something like hot chilli beaf nachos, macaroni cheese or shrimp cocktail as a snack....

For Dinner he will have whatever I serve, he will take enough pizza if it is served on a help yourself basis, then there will be a desert of my choice which is no problem...

He will never complain of being full, or fatty food, no ed talk at all....

He will sit with us or in the living room of our house after meals and there is no purging.

He has no interest in exercise now that he is in recovery...and chooses not to do it himself.

He can eat out in a restaurant  with no difficulty and choose something he likes rather than the lowest calorie....He is able to go out for the day and tell me when he got back that there was no desert served in XYZ house and he needs that or a snack...

However.....
He will not take anything else outside this plan...so he will not grab some sweets or a cookie outside this.....He has a few other small behaviours left that I am working on ...
That is what we are going to work on next.....So to get to where we are, it has been a huge battle , but we are winning it, and I will persevere......


__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
Mamaroo

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Reply with quote  #10 
Hi Rose, congratulations 😁! You've done a terrific job.

I remember my d being so obsessed with the schedule. All meals were served at the same time every day. Drove me crazy. I spoke to our treatment team's psychologist, who told me that the schedule gives her predictability and reduces her anxiety. So we sticked with it until she was gaining enough weight, around 90% WR. Them we started to be more flexible with the snacks' schedule, allowing a half an hour window for them. Note that all meals and snacks were still being served. After a while, she would tell me that it's weird that I served the meals and snacks at specific times and, please, can I stop being to obsessed with the clock. So that behaviour will disappear when she approaches her correct weight.

My d was also against sweets, ice creams etc. We followed Julie O'Toole's (Kartini Clinic) suggestion to limit hyperpalatable foods for the first year. When she was WR, we started to give her desserts, starting with frozen yogurt, then frozen yogurt which looks like ice cream and finally ice cream (Scaffolding like EC_Mom said). Same with snacks such as pop corn and chips. If we asked if she wanted them, she would always refuse, so the best way was just to give it to her.

Today she had het first sweets in 2 years! Same thing, just gave it to her after school. I agree with Mamabear that when my d said she didn't want something, then that's what she really wanted. We went to Ikea for lunch and I didn't have anything specific in mind, until D told me she won't have the meatballs. Told me over and over, so I ordered the meatballs and she ate them as if it were Christmas.

My d is at the correct weight curve for the past seven months now and her mood is great. It taken between 6 and 12 months from WR to see brain healing. There is still some ED behaviours, she still has 6 meals and snacks everyday and like Toothfairy's son, won't have anything outside the plan or just grab something. When she does have something outside the 6 meals/snacks time, she would have less at the next snack 😕. But, considering I had to refeed her on ensures alone (because all food were fear food) for 6 months, she has come a long way.

With regard to treats and junk food, tell her that normal people eat dessert a couple of times a week, that normal people have takeaways once a week/month (whatever suits you), that normal people eat cake at parties etc. Then just give her the cake, don't ask.

When she has reached her historical weight curve, fear food will get easier, ED behaviours will be easier to fight. Now my d doesn't mind that a small snack is followed by a large meal. Previously all snacks and meals had to be the same every day, that is, breakfast had to contain the same calories every day, regardless of what I was serving, same for the other 5 meals.

Just keep going, you'll soon have your d back.
Sending lost of hugs 🤗🤗🤗🤗🤗

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. Challenging fear foods and behaviours now.
mamabear

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Reply with quote  #11 
Hey Toothfairy-
You've probably heard me say this before, but one thing that I did that eventually worked to get my D to have something " extra" was to have glass jars of things around the house. Little mini candy bars, little licorice nubs etc. In front of her we would just grab a few and pop them in our mouths. We would ask " Do you want some?" She would say no. I would remind her that normal teenagers and normal people will pop a couple of M & Ms in heir mouth or a small chocolate mint. We wouldn't make a big deal out of it... but at some point in time she started to do it. I still have those jars around my house. Now my D will throw stuff in the grocery cart for the jars.

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toothfairy

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Reply with quote  #12 
Hi Mamabear,
Thanks so much, I am definitely  considering that, and hope we will make progress there in the near future.
I think he may have grabbed/eaten extra biscuits at scouts last week, so  hopefully we are heading in the right direction..
We also have started to raise it with him, like you say, normal teens grab sweets or biscuits.
Thank You So Much,
X TF

__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
Torie

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Reply with quote  #13 
Quote:
Originally Posted by rose08
So how?  How do I approach this rationally to a completely irrational mind which is actually making a pretty rational sounding argument 


You don't.  

It isn't possible to persuade an irrational brain to be rational.  It. just. isn't.  Words cannot make her brain be rational - only food + time can perform that miracle.

So what to do in the meantime?  Develop a mantra or two you can repeat over and over and over so you don't get dragged into the no-win situation of arguing with an irrational brain.  Mamaroo and mamabear have given some good suggestions: "With regard to treats and junk food, tell her that normal people eat dessert a couple of times a week, that normal people have takeaways once a week/month (whatever suits you), that normal people eat cake at parties etc. Then just give her the cake, don't ask."  Another good one is Eva Musby's "I'm your mom/mum. I know exactly what you need."

Just repeat your mantra of choice and then change the subject.

It does get better eventually.  It really does, even if it seems like forever.  xx

-Torie

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BattyMatty_UK

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Reply with quote  #14 
Quote:
Her dangerous behavior (trying to escape out a- moving car)


Been there, experienced it I am sorry to say...

The thing that worked for us BUT - and this is a big BUT (so to speak!!) - we did it once my son was battling to get well rather than resisting. The eating disorder was damn strong and he was finding it punishingly hard to do what was required to get well. Importantly, I knew I could trust him to be telling the truth by this time.

The two of us put together a Contract. Here's what I say about it on my blog (it may be useful to you at some point when your daughter has reached a similar stage in recovery):

***

On 20th March 2011, I bought a lined exercise book and every day we sat down ‘on neutral territory’ and discussed what Ben had eaten (in brief), how many calories he’d had, what challenges he’d overcome and whether he’d managed to keep to his agreed exercise list.

[Slide35]
It was also a good time to share any thoughts or any difficulties, or for either of us to ask any questions, without biting each other’s heads off. The key is to keep calm and for this ‘meeting’ to be equal, in ‘No Man’s Land’ (but of course ED is banned!)

[Slide36]
As the parent / carer, you have overall control. The idea is for this to appear as a joint effort in which they can participate and have views / opinions. It’s also a fantastic opportunity to really talk about what’s going on.

[Slide37]
“Let’s do points”, I’d say, when we had a quiet 5 or 10 minutes in a day – or even every other day.

The Contract has been a very positive thing, full of encouragement and low on penalties. We compiled the contract together (although, in reality, I engineered it to go the way I wanted…)

[Slide38]
Any part of the contract can be adjusted at any time depending on progress, but it needs to be mutually agreed (i.e. not appear to be mum inflicting her will on child).

[made%2Bit]
The first part of the contract (#1 - #3) sets out the parameters. #4 lists the rewards / points.

#1: Eating

  • Here I note down the agreed daily calorie amount. (Not everyone deals in calories, so it needs to be something where you both agree how much will be eaten in any one day.)
  • I also note any agreed adjustments if, on weighing weekly or fortnightly, he’s lost, maintained or put on weight. (Usually we’d agree to increase by 100 a day if he’d lost weight and 100 every other day if he’d maintained – until we got back on track to a gradual weight increase or reached an agreed Weight Restored.)

#2: Weight Gain

  • How much weight you expect him to gain each week or fortnight (in our case although we aimed at 0.5kg a week it actually worked out at nearer 0.26kg per week)
  • When he will be weighed and where (e.g. every Friday morning at CAMHS)

#3: Agreed Exercise – to be reviewed as necessary
  • Out of control compulsive exercise used to be a big problem with Ben. He didn’t know where to stop and was doing a ridiculous amount. So we wrote down a list of ‘agreed exercise’ over and above which he was not allowed to do.
  • He wasn’t allowed to carry forward ‘un-used’ exercise to another day.
  • Penalties for going over the agreed weekly list.

#4: Rewards – Points system

“Points win prizes!” was Ben’s mantra. 3 points = £1 and we’d keep a running total based on the points system below. Occasionally he’d withdraw ‘points money’ to spend on stuff (like his models or whatever).

This is what attracted Ben most to the idea of the Contract – a great way to save up for stuff! Also, at a time when he was feeling unable to control things like eating and exercise, or go into school, points gave him the encouragement and boundaries he needed.

Yes it was a bit expensive at first, but it was worth it! As things improved, some challenges were removed because they were no longer challenges. These days all he gets points for are new challenges only (not calories, exercise or anything because that’s been under control for a while). But again all this was mutually agreed.

We also wrote down the number of points that can be deducted for dishonesty and how many get deducted for what. (Note: we rarely had to deduct points.)

Food:

  • 1 point per day Ben keeps to current calorie total
  • 2 points for every day Ben exceeds current calorie total by a min of 200
  • Points deducted for cheating, etc

Challenges:

Challenges are a fantastic way to get them to face their fears e.g. fear foods, etc – and give them a go.

1 point for each challenge. These might be: fear foods, socializing, a challenging meal, eating between meals, ‘condense calories’ (as Ben calls it), eating out successfully, ‘sitting around doing nothing’ (as Ben calls it) followed by a big meal, etc etc.

It’s not just a case of asking them to list the challenges but to talk about why they were a challenge, how he felt about overcoming them and how brilliant it is that he overcame them.

And of course, new challenges gradually become old challenges, then phased out altogether.

As Ben discovered that doing challenges didn’t mean massive weight gain, indeed sometimes he didn’t put on any weight after a challenging week, the challenges stopped being something he was afraid of.

School:

  • 3 points for every full day
  • 2 points for every full morning
  • 1 point for every part morning or full afternoon

Exercise:

  • 1 point per day Ben keeps to exercise part of contract
  • 3 points for any non-exercise day
  • 3 points deducted for dishonesty
  • 2 points deducted when DON’T have 200 calories on extra exercise days

Weight gain (serious points here!!!!):

• 20 points for every fortnightly weigh-in session Ben incs by 1kg
• 18 points for every fortnightly weigh-in session Ben incs by 0.9kg
• 17 points for every fortnightly weigh-in session Ben incs by 0.8kg
• 16 points for every fortnightly weigh-in session Ben incs by 0.7kg
• Less than 0.7kg = zero points
Don’t deduct points for losing weight – keep this a positive contract

The above contract to be adjusted accordingly subject to regular parental monitoring of progress.


Signed ______________________________ (Ben)


Signed ______________________________ (Mum)


Date: ______________________________

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Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
hopefulyetscared

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Reply with quote  #15 

Hi rose08,
Looks like you have already received some great suggestions here but I thought I would share with you a little about our journey so far. My D was about the same age as your D when diagnosed, 12 years old. We are now about 2.5 years into this and I see the light at the end of this dark tunnel, we are getting there.

My D also would also not want to eat "junk food" and had a fear of fats (although she would never admit that. It was always "I just don't like that".) We did FBT at home and after about 4 months she was at a "healthy weight" but it was about a full year of eating pretty much the same 3 snacks a day, the same shake for breakfast and a variety of lunches & dinners. I did try to introduce the fear foods along the way but I didn't push a lot of them. There was still so much ED resistance in the day to day with dinners, lunches, eating out, etc. that I picked my battles, but at the same time the ED was being challenged. I know some people suggest "ripping the bandaid" and doing it all at once, but that just didn't work for us. Those first few months if for example, we went out for ice cream or ordered dessert at a restaurant, or were celebrating a birthday, she wouldn't eat it. But slowly I started telling her she must to eat what everyone else is in these "social situations" and she would. 

After a year we developed a contract and gave her incentives to eat. (Both positive and negative.) negative: if she didn't eat meal/snack nicely and in timely manner phone was taken away until next meal.(If I took away any longer than there was not incentive to eat the next time!) Positive: We would "pay" her for a good day $1 and then sometimes if she did something on her own or super challenging (which didn't happen often) I would give her and extra $ right then and there. And say "good job, I know that was hard".

Another thing I did to introduce different snacks was to start tackling the morning snack by putting a variety of different snacks in a bin, maybe 8-10 things already portioned out in bags and she had to choose one everyday in whatever order she wanted but had to go through them all. Some things were easier for her (bars) and others hard (chocolate, seeds, chips, etc.)

I also stayed away from nutritionists. Was referred to one at the onset and we saw her for a few weeks (with my D!) which in retrospect was a really bad idea. She did more harm than good. I think if you are doing FBT and as a parent you are in charge of food, there is no reason for a 12 year old to be involved in any conversation of calories, fat, protein, etc. That is not normal 12 year old behavior.

Best of luck. Hang in there! It does get easier, but that first year was super painful, challenging, and scary for me. And we are not through, but definitely, heading in the right direction. This forum helped me not to give up hope.

Now my D is 14, in high school, eats anything I ask of her with little to no resistance and is social, plays sports, goes out, and I worry less and less.

All the best,
HYC

eternalhope

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Reply with quote  #16 
Rose- you have done an amazing job. I really admire what you have done in your own. Hard work. Fear foods are the toughest, but it will get easier in time. We were trained at ERC in Denver to keep bringing them on. If rejected, it comes back and back. While we were in treatment, over a one week period, a know of two families who battled a spaghetti fear. The spaghetti came back 3 times, and I can tell you in both cases, it was eaten and completed on the 3rd try. Try try try. Also- my d still dislikes everything. She will never says she likes anything. But she eats it.
rose08

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Posts: 73
Reply with quote  #17 
Wow.  You are all fantastic.  I just read all the replies plus the new ones and am just blown away by the sheer amount of experience, advice, compassion and time taken to share your hard earned knowledge.   

So today i bought a cross between a granola bar and wanna-be health bar - the big thing being SHOP bought, FACTORY made and of course a label on very clearing saying things like SUGAR, fructose etc.  I put on my best poker face and said without skipping a beat, "I bought a treat for you to try for snack time with your smoothie, here it is" and busied myself moving some cups and plates around.  I deliberately used the word treat, (I so want it to be OK to have a "treat" even if it is just a substitute for regular snack and not extra).... risky but I guessed I had to start somewhere that counted.  You could have heard a pin drop, and then, "but there is sugar in it, lots of ACTUAL sugar", my poker face and I was like, Oh really? So how was your day at school? This carried on for a few minutes, her questioning, me batting it away. BUT SHE ATE IT!!!! Declared afterwards it was too sweet, but she ate it! No demon effect, no tears, no stony silence and steadfast refusal - and afterwards jauntily carried on with her afternoon. 

I know this may sound like such a small, small thing, but considering it was fear food in that it was not homemade, contained a label that clearly read sugar, was not a health bar along the lines of what she thinks safe (date bars with avocado oil and sweetened with the tears of starfish kind of horrible things) I think we may have a foot in the door and its given me some courage after the last disaster to try again.  Thank you everyone, for giving me the courage to try, I think it is what I needed more than anything else.

I had the chat with her GP re WR yesterday.   She referred a lot to her BMI and where she is in terms of age and height... and basically said she is fine where she is now, that is if I am happy with a child that is on about the 20th percentile for weight but 70th for height. I was very firm and said I am aiming for where I feel she is best placed to make a recovery, looking at "state not weight" which I am certain would be above the 50th percentile and maybe then some... She wasn't completely convinced but did say to me that i had gotten this far and for the first time she had noticed a positive change in my D's demeanor and ultimately I knew her best.  So, thank you ATDT, I don't think I would have been able to hold my own in that conversation a few months ago without the knowledge and references I have gained from here.  Tomorrow we meet the psychiatrist, am hopeful it will be another positive step in this journey. 

In summary, I think I have learnt that just when you think its not possible, try again and maybe you will be surprised at the outcome. it takes courage and this forum has buckets full.  Everyone has a different way of getting there, as long as you get there in the end.  I like the contract idea very much too, thank you all for sharing!  xx

  


rose08

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Posts: 73
Reply with quote  #18 
Thank you for sharing, it sounds so similar to our situation.  We are very fixed on the routine and especially school lunches and snacks are pretty much the same every single day... I think the picking of battles is what I need to master.  My D also just says "she doesn't like something" or "its not healthy"... and never mentions fats, calories etc. One of the reasons I am wary of dietitians too!  Your story gives me hope, thank you. xx

Quote:
Originally Posted by hopefulyetscared

Hi rose08,
Looks like you have already received some great suggestions here but I thought I would share with you a little about our journey so far. My D was about the same age as your D when diagnosed, 12 years old. We are now about 2.5 years into this and I see the light at the end of this dark tunnel, we are getting there.

My D also would also not want to eat "junk food" and had a fear of fats (although she would never admit that. It was always "I just don't like that".) We did FBT at home and after about 4 months she was at a "healthy weight" but it was about a full year of eating pretty much the same 3 snacks a day, the same shake for breakfast and a variety of lunches & dinners. I did try to introduce the fear foods along the way but I didn't push a lot of them. There was still so much ED resistance in the day to day with dinners, lunches, eating out, etc. that I picked my battles, but at the same time the ED was being challenged. I know some people suggest "ripping the bandaid" and doing it all at once, but that just didn't work for us. Those first few months if for example, we went out for ice cream or ordered dessert at a restaurant, or were celebrating a birthday, she wouldn't eat it. But slowly I started telling her she must to eat what everyone else is in these "social situations" and she would. 

After a year we developed a contract and gave her incentives to eat. (Both positive and negative.) negative: if she didn't eat meal/snack nicely and in timely manner phone was taken away until next meal.(If I took away any longer than there was not incentive to eat the next time!) Positive: We would "pay" her for a good day $1 and then sometimes if she did something on her own or super challenging (which didn't happen often) I would give her and extra $ right then and there. And say "good job, I know that was hard".

Another thing I did to introduce different snacks was to start tackling the morning snack by putting a variety of different snacks in a bin, maybe 8-10 things already portioned out in bags and she had to choose one everyday in whatever order she wanted but had to go through them all. Some things were easier for her (bars) and others hard (chocolate, seeds, chips, etc.)

I also stayed away from nutritionists. Was referred to one at the onset and we saw her for a few weeks (with my D!) which in retrospect was a really bad idea. She did more harm than good. I think if you are doing FBT and as a parent you are in charge of food, there is no reason for a 12 year old to be involved in any conversation of calories, fat, protein, etc. That is not normal 12 year old behavior.

Best of luck. Hang in there! It does get easier, but that first year was super painful, challenging, and scary for me. And we are not through, but definitely, heading in the right direction. This forum helped me not to give up hope.

Now my D is 14, in high school, eats anything I ask of her with little to no resistance and is social, plays sports, goes out, and I worry less and less.

All the best,
HYC

rose08

Caregiver
Registered:
Posts: 73
Reply with quote  #19 
Thank you Eternalhope - fear foods scare me just as much as they do my D at this point, but we will get there in the end xx Ah, I cant wait for the day she says thank you mom, that was delicious after dinner... 

Quote:
Originally Posted by eternalhope
Rose- you have done an amazing job. I really admire what you have done in your own. Hard work. Fear foods are the toughest, but it will get easier in time. We were trained at ERC in Denver to keep bringing them on. If rejected, it comes back and back. While we were in treatment, over a one week period, a know of two families who battled a spaghetti fear. The spaghetti came back 3 times, and I can tell you in both cases, it was eaten and completed on the 3rd try. Try try try. Also- my d still dislikes everything. She will never says she likes anything. But she eats it.
rose08

Caregiver
Registered:
Posts: 73
Reply with quote  #20 
This is awesome and really something special to have come up with, will for sure look at your blog xx

Quote:
Originally Posted by BattyMatty_UK


The two of us put together a Contract. Here's what I say about it on my blog (it may be useful to you at some point when your daughter has reached a similar stage in recovery):


eternalhope

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Posts: 162
Reply with quote  #21 
Rose- your victory is not small and has brought tears to my eyes. Congratulations!!!
Torie

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Reply with quote  #22 
Yay!!!!

Rose: 1
ED : 0

You rock!!!  xx

-Torie

__________________
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Posts: 404
Reply with quote  #23 
Yes Rose! You are a heroic mum! I know what that bar means to you. I can tell you the date of the day when my d first said that the steak I served her was too small...[biggrin] even if it was 5 months ago. Remember these days in mind when it might go back one step again. It will give you the power to win the last fights.
You all should be nominated for nobel price! No one but us can understand what that means.
Please keep posting, Rose, these are the posts which keep all those alive who are stuck in the really bad days. Hope is the biggest gift for all the parents.
Send you a huge hug from germany!
Tina72
toothfairy

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Reply with quote  #24 
Batty - Love it!
__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
toothfairy

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Reply with quote  #25 
Rose , have you seen this

http://www.aroundthedinnertable.org/post/stages-and-timelines-and-how-they-set-us-all-up-to-fail-7917698?&trail=25#gsc.tab=0



__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
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