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scaredmom

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Reply with quote  #26 

McMum,
It is an interesting question that you pose. Every situation is different but there are big similarities. The first thing is proper nutritional rehabilitation, then we need to continue to fuel the growth with a lot of calories over time and may need to increase those calories so that the child grows.(toothfairy just posted that here on this thread) So my D was diagnosed at age 11 (almost 12) and now 13. We still have a schedule of 3 meals and 2-3 snacks. She does not eat intuitively, and we are still challenging with new foods and new experiences and eating a bit outside of her regular times. It is hard and takes years. The one problem is that kids are handed control too early in the process. I have seen that here so many times in only the last 1.5 yrs that I have been here.  In the Lock and Le Grange book they talk about after WR, to then start giving back control to the kid and teaching them how to eat on their own.( From my recollection, they discuss a one year plan!!) I do not agree with that at all! I think it takes years, not the refeeding, but the overall process of teaching them how to be independent eaters, eating enough and not going back. It is a bit of a dance. 

My D now knows what are good snacks and will get them herself with little or no prompting. She can order well at a restaurant. She can go out with friends and does eat. When she has friends over, she will eat even if they don't. 
Kartini clinic recommends that parents in charge until 17-18 where a child may naturally move away from parents and so we need to teach them how to do that. "stages" means nothing. There is a thread from mamabear, which discusses that. It has recently been bumped by toothfairy. 

I hope that helps. I have seen some post here it can take as little as 3 years to 7. It is a long haul, but there are pieces: Refeeding is the hardest, I think,but we are just 1.5 yr ins. Then handing back control slowly..., then when they become "adults", it seems to be another big piece. But take heart, it does get better. Many have adult kids and they are doing great! 
XXX

food+more food+time+love+good professional help+ATDT+no exercise+state and not weight=healing--->recovery(--->life without ED)

mimi321

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Reply with quote  #27 
I think one things that demonstrates flexibility (although we aren't anywhere near that) is they will eat beyond what is scheduled, somewhat spontaneously, and then with time some do begin to eat more independently. How that looks exactly, I'm not sure. Each child is different, with younger ones I think the turnaround could be faster, especially if wr fairly quickly, but for others it can take years of sticking to a schedule. We've been wr for about a month, still working on fear foods. Small choices given, (ie grilled cheese or pbj), but if I notice a choice is usually made favouring something "safer", I will be sure to serve the other one up without a choice at other times. 
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tammy

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Reply with quote  #28 
It is fourteen months from when our son was at his worst. There is no rigidity anymore. He is completely flexible with eating and will eat anything and everything. He eats intuitively and definitely has his hunger cues back!
I would say by about ten months from diagnosis we could gradually see the anxiety and rigidity lessen. For our son it was a slow gradual recovery until the tenth month and then it was a race to finish line.
They also wanted him tested for autism due to his rigidity and black and white thinking and all the rules he lived by when he was unwell. All these behaviours and rigidity have disappeared.
All kids will heal at different rates but keep on feeding and you will see improvement after improvement.

Tammy
WorriedMum68

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Reply with quote  #29 
Tammy

I was interested to read your post about your son’s lack of rigidity now, you have done a great job! Can you tell me at what stage you introduced fear foods?
I am in such turmoil about this. My daughter (15, diagnosed in August after 10 months), is eating well but with a fairly restrictive range of foods, and is very slowly gaining weight. Her fear foods are fairly typical:- fats, sugar, white carbs, processed foods. I’m terrified about the process of introducing these fear foods back into her diet, but know it must be done for a complete recovery, I just don’t know at what point to try. ....



WorriedMum x
tammy

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Reply with quote  #30 
Hi Worried Mum. Like you I was terrified of introducing fear foods. Some people go for a faster approach but I found introducing them gradually helped. Once I managed to get him to eat regularly I would introduce one fear food a week. I started with the food I felt would be easiest. I involved him in the decision between two fear foods and started off with only a small amount. It often created a tantrum and extreme fear. We would try again a few days later and found anxiety has lessened. As he got better he would tell me / hint at what he wanted to try next and it would get easier and easier. I never thought we would ever get back to pizza, McDonalds etc! I have not rested until he is eating all fear foods.
You can do it. Good luck.
Xx
WorriedMum68

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Reply with quote  #31 
Thanks for your reply, Tammy, it has given me a sense of courage! Your approach was the one I was considering, and it’s good to know it was effective in your case. I think my daughter would react very badly to a rapid introduction of fear foods, so one a week sounds like a good pace. It is also interesting to note how the anxiety lessoned by the second attempt. I too cannot imagine pizza etc being eaten, it must have been a wonderful feeling to see your son tucking into one!

Thanks once again

WorriedMum x
tina72

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Reply with quote  #32 
Quote:
Originally Posted by WorriedMum68
Tammy

I was interested to read your post about your son’s lack of rigidity now, you have done a great job! Can you tell me at what stage you introduced fear foods?
I am in such turmoil about this. My daughter (15, diagnosed in August after 10 months), is eating well but with a fairly restrictive range of foods, and is very slowly gaining weight. Her fear foods are fairly typical:- fats, sugar, white carbs, processed foods. I’m terrified about the process of introducing these fear foods back into her diet, but know it must be done for a complete recovery, I just don’t know at what point to try. ....
WorriedMum x


Introducing fear food again is VERY important because the patients that eat the greater variety of food have a much better outcome. In my experience the longer you wait with that the bigger the anxiety gets on both sides. There is no "right" way to do it, some do it slowly and some rib the band off, you need to try what works for your family.

We had a fear food list and started re-introducing fear food once a week when she was eating all we served without problems. We had 3 categories on that list. 1. things she can eat without problems (no fear food) 2. things she is not eating at the moment but will try in the next weeks and 3. things she cannot imagine to eat at the moment but would try later. There had to be at least 10 fear food in categorie 2. We had fear food day once a week (here it was sunday because that was day with less stress) and once a fear food was re-introduced we did it again in the next weeks until it was safe food again (normally that meant she ate it 2 or 3 times and that´s it) and it went to categorie 1 then and the place in categorie 2 was replaced by one food from categorie 3 then. We worked through that and after 6 months there was nearly no fear food left.
You can have her do that list with you if that works (to give her the feeling she has something to say) but if that does not work because of too much fear then do it alone.

Start with small amounts. The first introducing is the hardest, the second time was much better and the third time she ate it nearly normal.
If she is eating well again at the moment I would not wait any longer. The longer you wait the harder it gets.

Tina72

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Nicstar4

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Reply with quote  #33 
I love the categories! Definitely using that when I get there. Feels so far away at the moment.
Foodsupport_AUS

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Reply with quote  #34 
Quote:
Originally Posted by Tina72
Introducing fear food again is VERY important because the patients that eat the greater variety of food have a much better outcome. In my experience the longer you wait with that the bigger the anxiety gets on both sides. There is no "right" way to do it, some do it slowly and some rib the band off, you need to try what works for your family. 


We didn't find this at all. My D had extreme rigidity about eating for the first few years. Part of the reason I did not challenge that rigidity was the numerous hospitalisations where she would just stop eating altogether. As the hospital refused to replace missed meals if D went on hunger strike it would take 48 hours or so for admission. We then had to make up those  lost kilograms again and all the momentum that was lost. 

As D's brain healed I found introducing those foods she most tried to avoid quite easy. She relaxed a lot more and has not had any  restrictions on food types other than meat (she became pescatarian around the start of her illness) for some years. I would say it really relaxed around 3-4 years in, but the marked rigidity stopped by about 2 years. D  has now finally started eating meat again, 7 years in. That has take a boyfriend who eats meat, but she does  it without fear now. 

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krae

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Reply with quote  #35 
I have found that D will not eat chocolate or sweet things (fear food??) in any form at the moment for me. But in the last 2 months with one of her girlfriends she has eaten strawberries dipped in chocolate sauce, and with another has shared a tub of frozen yoghurt with berries and chocolate sauce.

I'm sure chocolate is a fear food, used to be her favourite, but if she is able to eat this food with her girlfriends does that mean she is trying her hardest to beat this fear? We are only 6 months into refeeding and she isn't wr yet. Gaining is slow but after 5kg gain from what she originally was her mood is soooo much better and I can see my daughter in there. Am I reading too much into her being able to eat chocolate, even though it's not spontaneous?

D is also, and has always been quite rigid in her eating (even prior to ED) but with her girlfriends she is more relaxed and can cope with a different time to eat and when snacks are due.


 
Kali

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Reply with quote  #36 
Hi,

We also went pretty slowly with fear foods. I think it really depends on the child. In our case, after weight restoration our daughter was eating a well balanced diet however was very afraid of ice cream. I introduced pies and cookies very slowly in a kind of laddered way that I read about in Eva Musby's book.

So, first fruit. Then fruit on a little pie tart underneath. Then whipped cream on the fruit on top of the pie tart. Then a real slice of pie, etc. I had nearly given up on ice cream, when one day, out of the blue, we were taking an evening walk and there was an ice cream truck and she said she wanted some. We actually took a photo of her, it was such a milestone moment.

I don't think there is a right or wrong way to do this...The most important thing is to work towards achieving full nutrition. I just think that each family needs to find the way that works for them.

So Krae, you could try building on the fear foods she has already tried and then serve them. Try putting a little chocolate sauce on her berries and serve it at home. Then you could try moving on to other types of chocolate after that is successful. Our ice cream breakthrough came 2.5 years into treatment and 1.5 years after weight restoration.

warmly,

Kali

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Mcmum

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Reply with quote  #37 
It's really helpful to hear how everyone has gone about recovery. When I first read on here about it taking years, I felt sick with fear, imagining that the child i was living with in the thick of refeeding would be like that forever but of course, they come back to you bit by bit with ups and downs so even if it does take forever, it's not always the nightmare of the early days. My s spontaneously hugged me yesterday when for months he has flinched at my touch and that means sooooo much!
WorriedMum68

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Reply with quote  #38 
Thanks for all your stories about fear food introduction, it helps to read about all these different approaches. My daughter is refusing to make a list of foods, I suppose that is just about her fear, so I will make my own list and start introducing very gradually. I did start at dinner last night, but my husband who was sitting with her thinks the fear food went in her cheeks and was not eaten. I shall try again with the same food tonight. I find it very hard to make really sure no food is hidden away, I have tried looking in her mouth but she gets angry and runs off. Does the desire to hide food disappear gradually as weight is restored, or is it something that needs to be stamped out? I’m glad your daughter is better after such a long time, Foodsupport_Aus, I have heard of a few cases where anorexia was finally overcome when the sufferer found a long term partner.

WorriedMum x
mimi321

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Reply with quote  #39 
Quote:
Originally Posted by WorriedMum68
I did start at dinner last night, but my husband who was sitting with her thinks the fear food went in her cheeks and was not eaten. I shall try again with the same food tonight. I find it very hard to make really sure no food is hidden away, I have tried looking in her mouth but she gets angry and runs off. Does the desire to hide food disappear gradually as weight is restored, or is it something that needs to be stamped out?


Hi WorriedMum68,
this is one of those things that needs to be addressed up front and stamped out on the spot, no matter how much it annoys her. Even my D does that now, one month after wr with fear foods. My D has hidden food in cheek, on roof of mouth and under tongue. Ask to check, especially with fear foods and especially if it is the last food they have eaten and they want to leave table right away. You could ask her to swish and swallow some water after she eats as well. If you don't check and she is hiding food in her mouth, she is likely to spit it out once she is away from table and on her own. Having her stay with you for a time after is another strategy to be sure she isn't hiding food in her mouth. Or having her eat something else following it. If you watch carefully it will be fairly obvious, and if she has this tendency, I would expect it after a fear food.

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scaredmom

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Reply with quote  #40 

Hey cm72,
How are things?

Thinking of you.
XXX

cm72

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Reply with quote  #41 
McMum, no worries about hijacking the thread. Ask away! It's all of interest to me.
My D has always been good about getting her own breakfast. I pack all snacks, lunch and dinner. Yesterday she skipped breakfast but then did good the rest of the day. I think when she doesn't have school, we struggle more. These kids definitely like the structure. She is eating but freaks out with fear foods even more so than usual. We have a meeting with our counselor today so hopefully she can guide us in the right direction.
WorriedMum68

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Reply with quote  #42 
Thanks for your advice, Mimi, I think we are going to have a bumpy end to dinner tonight, then. Interesting how your daughter still keeps food in her mouth even when wr, it really can take the brain a while to mend itself. You have done really well to get your daughter back on track so quickly, is she at her pre anorexia weight, or have you gone higher?

WM x
Ocras68

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Reply with quote  #43 
I agree about introducing fear foods in a structured and gradual way. With my d, one of the fear foods was ice-cream. We started her with first one spoonful taken from my ice-cream bowl (having told her just beforehand that she would be having one spoonful, no negotiation). The next time two, then three spoonfuls and so on until she had a scoop in a bowl all to herself and ate it without resistance.
Be prepared for setbacks. We were at the theatre recently and I told her that we (the family) would all be having ice-cream at the interval. All seemed fine until it came to buying the ice-cream. I chose strawberries & cream for her. She was standing beside me (my mistake, I should have simply presented the food to her) and immediately said “But I don’t like strawberry...”. I asked the vendor for vanilla instead and my d said “No wait, I want caramel” and then “no, I don’t, I mean, but wait, I don’t...” I paid for caramel and handed it to her. She had a panic attack and immediately started to look at the packaging. I managed to salavage the situation by quickly taking the (small) tub from her and giving it back to her saying “I am giving you this to eat. Magic plate. Do not read. I’m in charge”. Thank God there was nobody in the queue behind us, and the long-suffering vendor turned a blind eye. Those few words lifted the burden of choice and the ed’s voice. My daughter ate the ice-cream, and the storm passed.
Yesterday I gave her ice-cream after dinner and she ate three scoops without any problem at all.
Hang in there.
mimi321

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Reply with quote  #44 
Hi WorriedMum68,

It's kind of funny because this is a behaviour that popped up after wr, but seemingly directly related to fear foods. I didn't do as many fear foods as I would have liked leading up to wr, so maybe that is why. It does take time for full brain healing, 6 months I have heard, but it is sooo much easier now. Everything about life is better, just these challenges I have to keep up now to banish the restrictive thinking.

I would say we are 5 or 10 lbs over at this point, but she seemed to be doing noticably better at about 5 lbs over. She had to gain every lb lost to get her period back. She was at the 86th percentile for weight when she started and that is where she returned. I haven't backed off on calories as advised and I think she is still gaining. But she has developed so much, too, very curvy figure whereas months ago her chest had been flattening out. No height yet, but that still might happen as she is still only 12.

At least you will be prepared for tonight. I found that helped knowing to expect it, then give yourself a pat on the back once you follow through. The rest is just ED noise and will pass in time. You've got this!

-mimi :)

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WorriedMum68

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Reply with quote  #45 
Thanks Mimi321 and Ocras68, I really get strength and motivation from these replies. Wouldn’t dare try ice cream yet, but plenty more on the list to choose from....!

WM x
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Reply with quote  #46 
Thank you, ScaredMom, for summing up what I have often seen on this forum, and now have lived.  I agree wholeheartedly, that it's a long process, teaching them to be independent eaters.  It goes in incremental steps, or things fall apart.  "It is a bit of a dance," as you put it so beautifully.

McMum, I've read many of your posts, and my heart goes out to your whole family.  I send you a great big CHEER for recognizing what is happening with your daughter, as young as she is. 

For our daughter, now 18, these challenges began without our realization, at about the same age as your daughter's.  Once I realized what was happening, age 14, it was an uphill battle because by then behaviors were very entrenched and I could not get a proper diagnosis.  Very long story.  Your course will go better, I am sure, because A) it's earlier, B)  your D still has friends, and C) you have this forum!

I want to encourage you to listen to your own intuition.  High levels of fear, sadness (even grief) and anxiety are totally normal for parents of kids with ED.  I often felt, in dealing with medical providers, that I had to keep my real emotions under wraps, in order to be taken seriously for my daughter's sake.  Having a wave of concern is not the same as catastrophizing, if you feel emotions flaring when you spot a problem... Often, you are the most realistic and reliable person in the situation, having eyes on your child as you do.  Plus, you've known her from birth, and have something to compare Now to... So just bear that in mind, no matter what a rollercoaster ride this may be.

My D just started college this fall, and is losing ground.  We are increasing parental support.  I second what ScaredMom wrote, that too often independence is handed back too soon. 

Even 4 years into recovery, my H often goofs up on the ever-changing Plan if I do not spell it things out, ad nauseum.  He may offer too much choice, or take as "real" what I hear as an ED behavior.  ("I'm not really hungry right now," after a day of restricting, means absolutely nothing).  I really hear you, about the difficulty of sharing the responsibility.  However, because this is a 24/7 job, not unlike caring for a newborn, I think it would be worth some time and effort on his part and yours, to get him up to speed.  It helped my H when he attended the parent portion of our daughter's intensive adolescent outpatient program, a couple of summers back. He also came along to parent support groups.  Whenever he could not attend (because someone needed to be home, cooking and feeding), I made sure to fill him in.  

My H and I really do have to talk about it every day, or too easily it can take a toll on our connection as a couple.

We have found it hard to get away for dates, since our younger child also has ED issues.  So, we get him to go to bed on time, and we watch lighthearted movies together.  It's a good escape. 

You asked for tips on how to relax and calm down:  I declared the shower a worry-free zone, and made sure to keep nicely scented products handy. I actually keep a small lamp in the bathroom, so that when I run the shower and fan, the light is lower and calmer.  NO THINKING!  😉 

I have a friend who listens to me, almost daily...  She has twice as many kids as I do, but somehow she makes time for at least a little chat.  If she's busy, I can leave her a voice mail or a text, and even putting things into words usually helps me feel stronger.  "How are YOU?" is a question that can be lost in the strenuous work of parenting a child with an ED.

Another tip I have for relaxing is to realize that you actually are moving a mountain, piece by piece, and to give yourself credit, daily.  This is true with any condition involving mental health (or physical health, I'm sure)... It may sound silly, but ED's are so complicated and so misunderstood by the general public, that you may or may not have much outside support.  Your husband and you can at least provide this understanding for one another:  while doing this incredibly important and necessary work, other expectations may need to be let go. 

Good wishes to you and your daughter, McMum, and thank you very much for your posts.  







Quote:
Originally Posted by scaredmom

McMum,
It is an interesting question that you pose. Every situation is different but there are big similarities. The first thing is proper nutritional rehabilitation, then we need to continue to fuel the growth with a lot of calories over time and may need to increase those calories so that the child grows.(toothfairy just posted that here on this thread) So my D was diagnosed at age 11 (almost 12) and now 13. We still have a schedule of 3 meals and 2-3 snacks. She does not eat intuitively, and we are still challenging with new foods and new experiences and eating a bit outside of her regular times. It is hard and takes years. The one problem is that kids are handed control too early in the process. I have seen that here so many times in only the last 1.5 yrs that I have been here.  In the Lock and Le Grange book they talk about after WR, to then start giving back control to the kid and teaching them how to eat on their own.( From my recollection, they discuss a one year plan!!) I do not agree with that at all! I think it takes years, not the refeeding, but the overall process of teaching them how to be independent eaters, eating enough and not going back. It is a bit of a dance. 

My D now knows what are good snacks and will get them herself with little or no prompting. She can order well at a restaurant. She can go out with friends and does eat. When she has friends over, she will eat even if they don't. 
Kartini clinic recommends that parents in charge until 17-18 where a child may naturally move away from parents and so we need to teach them how to do that. "stages" means nothing. There is a thread from mamabear, which discusses that. It has recently been bumped by toothfairy. 

I hope that helps. I have seen some post here it can take as little as 3 years to 7. It is a long haul, but there are pieces: Refeeding is the hardest, I think,but we are just 1.5 yr ins. Then handing back control slowly..., then when they become "adults", it seems to be another big piece. But take heart, it does get better. Many have adult kids and they are doing great! 
XXX

food+more food+time+love+good professional help+ATDT+no exercise+state and not weight=healing--->recovery(--->life without ED)


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mjkz

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Reply with quote  #47 
My daughter still eats around a rough schedule because she doesn't get hunger cues.  She is not rigid about it.  In fact she works on a farm and I have seen her eat two snacks and a meal all at once because that's how she can fit them in.  It has taken a long time for her to be that flexible though.  For the first year or so in recovery, she couldn't handle more than about a 15 minute (if that) flexibility around her meals and snack times.  That has gradually loosened up over the span of another year or two.  Now I think she could handle eating everything in a day all at one sitting if she had too but I remind her to space things out in a healthy way.

Being around people who eat at fairly normal intervals helped a lot.  She took cues from the people around her and that helped her flexibility.  The people who own the farm have been wonderful in that if she is having a rough time, they will let her go and eat at any time.  She has learned how to prioritize needs VS the tasks at hands and has even suggested breaking for something to eat which is huge for her.  This summer has been very hot and humid and she was never the best at hydrating but again after working with the animals and seeing what dehydration does to them, she has gotten so much better.  She was the one running in to get drinks for people this summer which would never have happened even a year ago.  We'd have just found her in a faint behind the barn.
cm72

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Reply with quote  #48 
Updating. My H and other D have been out of town five days now. I had thought this would be a great time to challenge some behaviors. We had pasta one day (after she threw it 3 times, she finally ate) and Subway. Today I am trying a peanut butter and jelly sandwich for lunch. I made it ahead of time and she already freaked out so i'm expecting a battle at lunch. She's had multiple breakdowns this week, LOADS of complaining about bloating and feeling fat. It's been super rough. What I realized is, even though my H doesn't really help  with any of this (mainly because he doesn't get home from work until late and they just don't get along), what he does help with is giving me breaks. I'm so exhausted and burnt out. The only breaks i'm getting are when I walk my dogs. 
You know, trying to explain to an anorexic the reason they want to binge is because they are not eating enough is not even worth it. You can't use logic with them at all. Other than holding her down and forcing food down her throat, I can't increase past 2000. Just this week, she started using a smaller bowl for cereal in the morning. I just purchased Benecalorie (see my comments on an old post which I just bumped up) so i'm hoping I can at least get one of those a day in there somewhere.
scaredmom

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Reply with quote  #49 

Quote:
Originally Posted by cm72

You know, trying to explain to an anorexic the reason they want to binge is because they are not eating enough is not even worth it. You can't use logic with them at all. Other than holding her down and forcing food down her throat, I can't increase past 2000. Just this week, she started using a smaller bowl for cereal in the morning. I just purchased Benecalorie (see my comments on an old post which I just bumped up) so i'm hoping I can at least get one of those a day in there somewhere.


So true, not worth explaining. My D "loved" a small ramekin to eat fruit out of. I was told here, on ATDT to get rid of it.... it was torture to get it hidden, but it was the best thing to do. Can you hide the smaller bowls. Can you add cream to the milk for the cereal. I had a separate carton of "milk" with cream in it. I got it so that there was about 1/4 cream for the milk. 

Try to get more juices into her too. I replied to another post you just made. Try 1/4 cup at other meals etc.. and increase too? 

I am sorry it is so hard with H away. Hope he is home soon so that you get a well deserved break.
XXX

cm72

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Reply with quote  #50 
Yes, I will try the milk and cream. Great idea!
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