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goblin

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Reply with quote  #1 
I'm not really even sure of what I am asking for - my head is such a muddle and there is no clarity anymore.  I don't know how many of you have seen the film Love Actually - I feel like Emma Thomson's character when she realises the beautiful gift her husband had bought was not intended for her and she goes into the bedroom and starts crying but has to pull herself together really quickly and come out all bright and breezy to get her children out of the door to their school show.  I feel like I have nothing left to give anymore.

14 year old D diagnosed with AN mid June 2017 although with hindsight, had been restricting since April/May 2017.  

Refeeding at home with some support from psychologist and CAMHS ED doctor. 
All meals were and still are, accompanied by hitting/punching (herself) and constant movement - running on the spot, jumping etc which increases once the meal has finished.  She has been standing since the beginning of July.

Last week, we reached WR (the weight she was at the beginning of the year before eating behaviours changed) - 50th centile -  and thanks to all the information I have read on here, I am still pushing for above and beyond this figure.  She is no longer medically compromised which is great.

However, all the ED behaviours are firmly in place, including the interminable standing and severe distress when eating.  Meals are not any easier and snacks are point blank refused.

She is on medication, Olanzapine since beginning of August with no change noted and and Fluoextine for the past 2 weeks and I realise that this can take a while to kick in.

There is no motivation to do anything so removal of phone, going out, watching TV, computer etc has no impact.  She will just stand and stare at the floor and pick at the scratches on her arms.  She hasn't watched TV for ages, read a book, played an instrument, done online shopping, played computer games for 3 months now - all things which she loved.  She has no desire to do anything at all. Hence, if I impose consequences for standing etc, it has no effect as she doesn't care if she has nothing to do or nowhere to go.  She is my shadow and will just follow me from room to room and stand. 


I don't really know why I'm posting this.  I guess I just wanted to know that I m not alone in this.  I know that this is a marathon and not a sprint but I feel like I am failing her dreadfully and I see no light at the end of the tunnel.  It is just me and my daughter and I don't have family support and all friends work full time and most have families of their own to deal with.  I know that it is still relatively early days in this journey and we still have a mountain to climb. I just don't feel like I can keep on being Emma Thomson!


pettelly

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Reply with quote  #2 
No idea because we're at the beginning of this journey ourselves (13 yr old D, started restricting mid July, diagnosed ED end August) but I totally get the Emma Thompson bit - good analogy! I guess we just have to keep on doing it. Well done for weight restoring your D. We're still losing...
toothfairy

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Reply with quote  #3 
Hi Goblin,
IMHO
The first step into recovery is weight restoration.

TRUE , FULL AND PROPER WEIGHT RESTORATION. 

She sounds  to me that she needs to be  MUCH higher than the weight she was at the start of this year..

If you listen to the video I post with Dr PEEBLES, ITS AN HOUR LONG BUT EXPLAINS ALL THIS.

I kept hearing 50th centile as well from my anorexia specialist dietitian, my kid would NEVER have recovered and was stuck just like you are describing as the target was far too low for my kid.
I had to fire the dietitian and "go rogue".

The target bmi for my kid was bmi 19, he finally got into recovery at bmi 24/25.... 
I am going to post a few very important links below.

My kid needed and still needs  4000 plus cals a day ( even though he is in strong recovery) to  stay in recovery.
  Food is the medicine, food more food, supervision and time.
Best wishes

__________________
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  #4 

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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  #5 

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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  #6 
https://www.kartiniclinic.com/blog/post/setting-goal-weights/


https://www.kartiniclinic.com/blog/post/the-dangers-of-staying-slightly-below-weight/


http://www.feast-ed.org/?page=SettingTargetWeight
 


http://www.blog.drsarahravin.com/eating-disorders/weight-gain-predicts-psychological-improvement-in-anorexia-nervosa/ 

http://www.blog.drsarahravin.com/eating-disorders/10-common-mistakes-in-eating-disorder-treatment/



FOOD IS HER MEDICINE!

__________________
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  #7 

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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.
mjkz

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Reply with quote  #8 
Goblin, congrats on how far you have come.  It honestly took months at a good weight for a lot of the symptoms you are describing to abate in my daughter.  Brain healing takes time, true weight restoration, and continued nutrition.  One thing I did with my daughter was the only way she could stay in the same room with me (when she was at a similar place as your daughter) was if she sat down.  She never responded to any positive incentives (i.e. when you finish eating, so and so can come over).  Her choice was always to give up anything offered in order to not eat.  I took the only thing that seemed to matter to her and made conditions on it.  If you can't sit down when you are in the same room with me, I'll leave the room.  There were times when I would go into my bedroom and shut the door to keep her out.  It was the only thing that worked. 

I also started taking her places that really required her sitting down or look foolish in public.  We went to the movies and she stuck out like a sore thumb and got a ton of negative attention for standing so she would sit down.  I started requiring her to go to the library and get books out.  I "required" things she had enjoyed prior to ED and that helped push her into starting them again.  It was a slow tedious process and I pulled more hair out of my head in frustration at the lengths I had to go to at times but it did work.
Torie

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Reply with quote  #9 
Goblin, you are doing GREAT!!!

So impressed that your d is back to her pre-ED weight and delighted that you are pushing for more.  You will get your d back - just keep feeding her.  My d didn't have extreme behaviors, but the ED behaviors she did have melted away after she had been well and truly wr for a time.  It's amazing the miracles food + time can work.

I wonder if they could up the olanzapine?  

She probably doesn't have enough concentration right now to read a book, but I wonder what would happen if you required her to watch a show she likes.  Sometimes they feel they need to punish themselves (gosh darn self loathing is the worst) so maybe if it isn't her choice (but rather yours) she'll be able to do something she likes.

This vile illness sucks so much.  But you are making great progress kicking the beast to the curb. 

Keep swimming. xx

-Torie

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

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Reply with quote  #10 
Thanks everyone for your replies.

Toothfairy - your videos are very useful and yes, neither myself nor the CAMHS Dr are content with 50th centile and are both pushing for more.

mjkz - it's good to hear from someone that has been through The Standing.  Unfortunately if I leave my daughter alone she will compulsively exercise so her being asked to leave the room is not an option.  

I have some questions but just to give you an idea of the situation - Currently she is eating three meals but refusing snacks (these get added to meals) but will take hot chocolates.  She has the same meals (three different varieties). I am working on both these issues with little effect to be honest.  She is at school and has her lunch there.  Initially I met with her at lunchtime and she now has it with her friends - I have had this confirmed  and although I am wary, I don't have reason to doubt her yet.

We started FBT with CAMHS and did about 5 sessions.  She had a small but steady increase in weight and then nosedived  for a week.  At that stage, CAMHS said they would stop the FBT as it didn't seem to be helping and elevate it to "Tier 4". She started to gain more weight and we avoided IP.  

She has been seeing a CAMHS psychologist on a weekly basis for CBT and we we see the CAMHS Dr once a week.  However, she has had to miss school for the appointments with the psychologist and this has caused huge anxiety.  The psychologist said that she is very compliant during their sessions but does not open up and is very guarded.  My daughter no longer wants to attend these appointments as they are not working - I do not think her head is in the right place for CBT yet.

So, I spoke with the psychologist and we have arranged a review.  She said she is concerned that d is still displaying extreme distress when eating and that as she is not willing to work on her behaviours and goal setting d may be better in the Day Patient Unit.

My D is filled with fear at the thought of this.  I accept that some of this may be around eating out of the home but she had severe anxiety prior to ED and this would have sent her over the edge when she was well.  She would also have to come out of school and states she would not be able to go back as she wouldn't know what to say to people.  Again, this predates ED by many years - it's not missing school work or falling behind but the social anxiety about drawing attention to herself that causes the anxiety.

What do I do?

Do I plough on, feeding her, pushing for snacks and working on strategies to combat distress? Or do I agree to Day Patient Unit?  The problems with DPU I can envisage are: 1. D might refuse to go. 2. She goes but doesn't eat and we start to lose the precious weight that has been gained. 3. She goes, complies and then meltdown/refuse at home. 4. Attend and comply but refuse to go back to school. 5. She will be with other people with ED's and I am concerned that this will give her ideas or she may become competitive.

I couldn't give two hoots about her missing education but it is the normality that school offers  - the structure, the interaction with her friends, the ordinary things that aren't about ED that I am desperately trying to hang on to.

The psychologist said that it may be that my d has to get worse before she realises that she has to put the work in to get better.  I really don't want this to happen - every meal was and is, a traumatic experience and I can't bear the the thought of going backwards.

Is it possible to just carry on and just see the CAMHS Dr weekly?  I feel like there should be some kind of "treatment" but I don't know what...

I feel like I have concentrated so hard on getting the calories in that I have dropped the ball with distress/anxiety/hitting/movement and standing.  I just feel like I am getting it so very wrong.

goblin

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Reply with quote  #11 
Goodness, that was long.  Sorry.
deenl

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Reply with quote  #12 
Hi goblin,

It seems to me that you are drifting along in the sea of advice from CHAMS. Remember it is just advice. What do YOU think will work best for YOUR daughter? You know her best.

BTW, I am horrified that they stopped FBT after only 5 weeks. It took us ages of persistent and consistent practice of feeding at home for it to 'stick' and lead to consistent weight gain. Why did they just not consider some adaptations and increased support? As an example, if the weight loss was triggered by being weighed, then weigh blind. Did they offer olanzipine or another medication in order to support FBT re-feeding at home?

My son is doing really well and has never, never talked to any of the team. He is a really private person who would never spill his deepest thoughts to a stranger. It was truly impossible when starving, his brain just didn't work and now he thinks it is not needed as he is doing fine. (Who knows how this aspect will pan out?) My point is that we, as his parents, have provided everything he needed to become nutritionally rehabilitated as the foundation for further social and emotional recovery. (Edit: Sorry, didn't mean to imply that all parents should follow our path. We had no good professional options so we had to. But I would encourage you to tune in to you, your family and your daughter, think about what you need and how you see the path forward and only then see how the professionals can support and enhance that path)

Have you read the books Freeing your Child from aAxiety by Tamar Chansky and Rewire your Anxious Brain by Cathering Pittman and Elizabeth Karle?

I think you should talk with your partner (if around) and get a feel for what you want as the plan and get the professionals to support you. Not you guys fit into what the professionals who see your daughter in an office once a week think you need. I takes some time and lots of courage but trust your parental instincts.

Warm wishes,
D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
deenl

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Reply with quote  #13 
Quote:
Originally Posted by goblin
The psychologist said that it may be that my d has to get worse before she realises that she has to put the work in to get better. 


Sorry, I call old-fashioned, dangerous BS [mad]

She is your 14 year old! sweet darling daughter. Would they say this about someone with diabetes? They often go through a stage of rebelling against the medical necessities and want to be 'normal' but do the docs say ah well, let them fall into a diabetic coma and if they survive they will realise they need to follow the instructions. No! Just NO.

It is a game of whack-a-mole and it is sooooo exhausting, worrying, time-consuming, complicated, messy, tedious and VITAL work that parents do to support their child. I used to hang on to the idea that parents of kids with cancer would give body parts to have the chance to help their kids like we could. But there is no doubt that I chaffed at the restrictions and responsibilities of my life. But I had no other choice.

This is a difficult phase that you are in. There is so much to learn, so much information and advice and all with the daily sense of urgency as you watch your child struggle. But you will get through it. Try to develop a plan a, b and c to cover various situations. I found that helpful to give me a feeling of clarity.

Warm wishes,
D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
mjkz

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Reply with quote  #14 
Quote:
What do I do?


It seems to me that if she doesn't want to go inpatient or day patient, that gives you a ton of leverage to expand her eating choices, get snacks in and stop the standing.  She may try to refuse to go but you just need to make sure you have help getting her there.  She doesn't get to refuse to go to treatment.  Yes, she may refuse to eat there and then she will end up inpatient which may not be a bad thing.  She may refuse to eat at home then but again she will end up inpatient and again not a bad thing.  She also does not get to refuse to go to school.  When she is an adult, she may choose that but she is not and she needs to keep going to treatment and school.

I would continue with refeeding at home and using the higher level of care as leverage to expand her food choices, get snacks in, etc.  Rip the bandaid off.  Stop serving her only those three meals.  Start serving snacks and requiring her to eat them.  If she stop eating, then you know she needs a higher level of care and go for it.  Getting offered a higher level of care in the UK is rare and I wouldn't pass it up.  Keep reminding her that she needs to do this or go to day patient or inpatient care.  It really sounds like you are at a fork in the road and can choose which way to go.

As for asking her to leave the room, my daughter would do the same and I would remind her that she would have a supplement if she did exercise.  I actually would add food to the next meal assuming she would try to exercise.  It was the only thing that actually got through her cloudy brain and worked.  Try it once and see what happens.  She may choose to sit and great.  If not, then you know you need another strategy.  I would say 50% of FBT is finding things that work for you and running with them. If you never try them, you don't know if you are losing out on a valuable skill that could make some difference.
goblin

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Reply with quote  #15 
Thanks deenl and mjkz for your replies.  They have been really helpful.

Deenl - I have ordered the books and will read them as soon as I have a chance.  I was a bit taken aback by the psychologist's remark as I have always found her to be pretty switched on.  Now I have had time to reflect on it I can only think it was a poor attempt to get me to ramp up the pressure on ED and if it results in my d not eating, then the consequences will have to be faced which is kind of what MJKZ said in her post only far more eloquently.

I have made several changes since I read your replies and they both served to give me a bit of a kick up the arse which is just what was needed.  I felt so defeated.

Snacks are being implemented and I am dealing with the fallout - it is like the very beginning of re-feeding  all over again.  Horrific.  I nearly buckled at morning snack today but I kept on  going and it was eaten although it left us both exhausted (one and a half hours of hell but it was eaten!) Her self harm - punching and hitting - was through the roof and the most awful blood curdling screams I have ever heard.

MJKZ - I have started adding food to every meal as a direct consequence of exercise.  I have not increased the amounts of her usual food but have made a point of adding something extra and different (still a safe food) so she has a real visual sign of the consequences of the exercising.  We'll see how this goes - early days yet.  Im trying everything and anything with the standing but getting nowhere fast.

I haven't heard back from CAMHS yet so feel like I am adrift.  However, this forum is such a lifeline and regardless of what happens re treatment, I am not waiting to find out and will just keep going.




toothfairy

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Reply with quote  #16 
Hi Goblin, Yes "this" is the treatment - food is the medicine. Are you able to put butter and cream and rapeseed oil in her food? Well done on sitting out the snacks, keep going, it will get easier.
__________________
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.
melstevUK

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Reply with quote  #17 
Goblin,

"The psychologist said that it may be that my d has to get worse before she realises that she has to put the work in to get better.!

I am utterly horrified by this outdated comment which shows that this particular psychologist has absolutely no understanding about anorexia nervosa, and that it is primarily a brain condition, not a purely psychological one.   

If you see him/her again and you feel brave enough - I would point out that any loss of weight will most definitely not lead to any understanding on your d's part that she has to 'put the work in'.  Quite the opposite, she will find it even more difficult and terrifying to eat.  Patients, particularly when young and in the early stages simply do not understand weight gain as a task, or an issue that they have to get to grips with.  It is just something that seems impossible and not eating alleviates anxiety, so why would you fight it?  

Neither is there a 'root cause' or any reason for your d's restrictive eating patterns and weight loss other than that she is ill, and reversing the effects of starvation and getting weight put back on have to come first with everyone being on the same page to make that happen, leaving nothing to chance or choice on your d's part.

I really despair that there are still so many clinicians around who simply have not got their heads around this illness and I am sorry that you are on the receiving end of one of them.

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Believe you can and you're halfway there.
Theodore Roosevelt.
melstevUK

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Reply with quote  #18 
Goblin,

"The psychologist said that it may be that my d has to get worse before she realises that she has to put the work in to get better."

I am utterly horrified by this outdated comment which shows that this particular psychologist has absolutely no understanding about anorexia nervosa, and that it is primarily a brain condition, not a purely psychological one.   

If you see him/her again and you feel brave enough - I would point out that any loss of weight will most definitely not lead to any understanding on your d's part that she has to 'put the work in'.  Quite the opposite, she will find it even more difficult and terrifying to eat.  Patients, particularly when young and in the early stages simply do not understand weight gain as a task, or an issue that they have to get to grips with.  It is just something that seems impossible and not eating alleviates anxiety, so why would you fight it?  

Neither is there a 'root cause' or any reason for your d's restrictive eating patterns and weight loss other than that she is ill, and reversing the effects of starvation and getting weight put back on have to come first with everyone being on the same page to make that happen, leaving nothing to chance or choice on your d's part.

I really despair that there are still so many clinicians around who simply have not got their heads around this illness and I am sorry that you are on the receiving end of one of them.


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Believe you can and you're halfway there.
Theodore Roosevelt.
mjkz

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Reply with quote  #19 
Quote:
MJKZ - I have started adding food to every meal as a direct consequence of exercise.  I have not increased the amounts of her usual food but have made a point of adding something extra and different (still a safe food) so she has a real visual sign of the consequences of the exercising.  We'll see how this goes - early days yet.  Im trying everything and anything with the standing but getting nowhere fast.


Goblin, I found it worked much better and faster to have the consequence immediate.  My daughter got two warnings, then she got Ensure supplement.  She got 1/4 can for every 15 minutes of standing so I would warn her, tell her second warning and then she would immediately get the 1/4 can of Ensure.  She got a 1/4 can every 15 minutes until she sat down.  I found it much easier to break the habit that way and you can get a lot of calories in that way.  I would not make it a safe food either.  My daughter hates Ensure but it made a lasting impression that was done immediately after the two warnings. 
Torie

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Reply with quote  #20 
Quote:
Originally Posted by goblin
 I just feel like I am getting it so very wrong.


Well, it sounds like you are getting more right than the nitwit "professional" who made the she-has-to-get-worse-to-get-better comment.

You're doing MANY things right - it's just so freaking hard to parent these kids.  So dang hard.

One tiny idea: I wonder if a nice caloric smoothie would work as one of the snacks - sounds like she might be among those who find it easier to drink their calories?

Hang in there.  xx

-Torie

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

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Reply with quote  #21 
Goblin, she ATE THE SNACK! Yes with fallout and exhaustion, but she ate it!! 

This is what victory looks like at your stage. You're doing great--and that "ED professional" is not to be listened to. You know more and are doing it. 

I also agree that leverage must be immediate: Friends are coming in 20 minutes, so let's finish that snack or I'll have to send them home; neighbor is bringing by new puppy to play with after lunch, so let's finish up so that you can play with it. She wanted to attend a weekend party so much, it was 2 weeks away; so I printed out pictures of the friends attending and held them in front of her as mealtime began, talking through how fun it would be to be with them and how they would miss her if she couldn't go.
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