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tp7 Show full post »
Mamaroo
It also would take us forever to calm down my d, until our care coordinator at the hospital gave us this tip. When she started to cry (outside of meal times) we had to send her to her room, with the door closed, until she had calmed down. Naturally we had to make sure there was nothing there which she could use to harm herself. She would cry and scream for about half an hour before stopping.  I can tell you, that was a very long half an hour. As we continued to do this she was able to calm herself in less time. Lately I've used the same technique when my eldest, non ED d, started to act up. I would send her to her room, telling her she could come out when she has calmed herself. I reminded her that she wasn't 2 anymore. This only happened a couple of times until she was able to gain control of her emotions before they ran away with her. I sometimes think, I was too quick to sooth them when they were little and didn't give them the opportunity to learn to sooth themselves. 

As for expose to the outside world, I'll go with MJKZ's advice and still take as far as she can go and then let her sit there until she's bored. Then the next time take her one step further out, again letting her sit there until boredom takes over. With little steps, you'll get there.
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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Mamaroo
Here is a good YouTube video explaining the small steps to overcome the fear of going out:

*https://www.youtube.com/watch?v=u427uO_4mw0&app=desktop&persist_app=1*
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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tp7
Thank you for all the advice!  Mjkz, I'll try taking my D places and leaving her in the car if she refuses to get out. I think that's a great idea. 

Mamaroo, thanks sooo much for the link and the tips!

US_Mom, I think that I'll definitely start a calendar, as I think that it will help me be more optimistic as well.  I might also end up contacting her friends and asking them to reach out to her.  D is extremely private and she made up some story about getting mono as the reason for not being in school (which they still believe), so part of me is hesitant to violate her privacy in front of her peers.  However it's a double edged sword because I think that it makes it easier for her to isolate herself.  

MargieMom, it does indeed seem like we've been walking the same difficult path for a similar time period as my D was diagnosed in late January. **HUGS** Do you feel like your D has benefited from medication?  I know that there is a lot of debate around SSRIs vs anti-psychotics, but I suppose that everyone is different. Initially we thought that we would be able to do this without medication, but we would be very open to it at this point if only my D agreed to it.  

My H and I have a dilemma...there is an opening at a local behavioral health center for their PHP program in their eating disorders clinic in about one month.  On the one hand I could certainly use the support, and my D's current therapist said today that D's anxiety is way higher than she usually sees. I'm currently not too confident in D's current provider's ability to help her. In fact, her current providers often make me feel like she should have slotted back into life ages ago and they don't understand why she has not.  This particular new PHP program focuses not just on ED but also on anxiety, which we desperately need.  They do CBT and Exposure Therapy.  She's really not functional at the moment, she insists on wearing the exact same outfit every day (no matter how many clothes I buy her) and if by some miracle I manage to get her out of the house she will not leave the house without her coat and hoodie on at all times.  I'm also becoming extremely exhausted as I'm the one who deals with 90% of the outbursts because my H is at work.

However, the decision to send her to this new program suddenly doesn't feel quite as straightforward.  For one, there won't be much in the way of respite in the sense that they expect a parent to be there 100% of the time the first few weeks of the program.  My exhaustion aside, the real issue is that my son (who is already feeling very much pushed aside and anxious himself) would not see me at all in the mornings for eight weeks.  He has recently started bursting into tears and telling me that I don't pay any attention to him with everything that's going on with his sister.  So I've been trying extra hard to be around for him in the mornings before I wake my D up, it's the only "us" time that I get in the day with him and he would lose that.   Then there is also the concern about D not cooperating.  Ultimately if she refuses to go and lets them know that she doesn't want to be there, they will kick her out of the program because it's voluntary (without a refund I might add).  I have to say that I don't understand why kids that have an ED are given this type of power.  Finally I'm wondering whether my D might just need more time.  As I mentioned above, her current providers seem to think that D's anxiety is super unconventional.  But from these boards it seems like many of you have dealt with similar situations and maybe D is not so different after all and she just needs more food, time, and support from us.  

Did any of you go back to a PHP for anxiety or other co-morbidities or did you decide to allow them to settle down at home with time (and maybe medication)?  
The following post is also making me wonder how we can tell whether there is really an anxiety issue going on or whether it's all the eating disorder:

https://www.kartiniclinic.com/blog/post/the-many-disguises-of-an-eating-disorder/

xxx
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US_Mom
tp7, the calendar definitely makes me be more positive. My D's dietitian just yesterday told me to list all the positives my H and I are seeing. That is helping too. 

My D was on Zoloft for a short time and my and I did see an improvement but then had a meltdown and has refused it ever since. The ladies here said that it would be 3-6 months after WR before any improvement in thinking, and they were right! So I think medication could help but it's really the food that will make the difference. We're going on day 20 of good days without any meltdowns and on 4/21 she will be 5 months WR! She has been getting out and seeing old friends and made a new friend at school. It is going to get better for your D with the food!

My D was in IP for 2 weeks (not long enough) and PHP for 5-1/2 weeks (also not long enough but all insurance would cover) and they both did her good. IP got her to eat which my H and I couldn't. Fortunately, the PHP our D went to just involved her during the day. My H and I went to family nights there and some meetings with the dietitian. I think what helped there was just being around other people with the same problem and socializing there. I'm not sure if the therapy sessions really helped when her mind just wasn't at the right point. She goes to a private therapist now and still says it doesn't help. I'm not sure, but she is doing better. Are there any other options in your area for PHPs? 
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Foodsupport_AUS
My D had severe anxiety and depression for several years, with many of the same issues about clothing and going out too. It is all part of the ED. For my D it was managed with medication and weekly therapy - notably for a few years - but her skills now are amazing and way ahead of her non ED peers in managing anxiety. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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ValentinaGermania
" Finally I'm wondering whether my D might just need more time.  As I mentioned above, her current providers seem to think that D's anxiety is super unconventional.  But from these boards it seems like many of you have dealt with similar situations and maybe D is not so different after all and she just needs more food, time, and support from us. "

All you describe is very similiar to what I and a lot of others experienced with ED. I do not think that her anxiety is super unconventional (at least to what you reported about it).

"My H and I have a dilemma...there is an opening at a local behavioral health center for their PHP program in their eating disorders clinic in about one month. "

I think it is great to have that option in back but you can think about trying it at home first with more food, support and time going by and maybe you do not need it any more in a month or two. Try to get her out of her anxiety comfort zone a bit. Ask her friends to come around. Get her to wear some other pants for at least 2 hours because hers are in the laundry and you need to repair them/they are not dry/ think about another excuse why she cannot wear it NOW.
Here are a lot of parents that needed tricks to make their kids wear normal clothes again. The laundry is a great hideout 🙂. We had kids that did not shower. That did not change clothes at all. That did not reach out for any social contacts and that needed "playing dates" at age 17...
All that disappered slowly with WR and time. Food, food, food and working on all the fears with exposition therapy (like fear food) was the secret here.
Keep feeding. There is light at the end of the tunnel.
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tp7
Thank you very much for the advice, given that we have a month of time anyway we're going to give it some time and see how it goes before committing to this program. My H is at the limit of his patience. Although I'm pretty tired of always being the supervisor at meals, when I ask him to take over it ends up in a confrontation with our D.  For example given how she's terrified of walking outside, he has told her that he will throw her over his shoulder and walk down the street with her if she doesn't walk out of the house on her own two feet.  It has worked in the sense that she will now walk out of the house on her own because she thinks that he actually might do it and she's even more terrified of that. So while it has been helpful, as a strategy I think that we need better methods. So I will definitely be trying all of the methods that you all listed above.  Coincidentally, I spoke to a mom of a child who attended this same PHP ED program that we're considering and she had very good things to say about it.  They apparently work to address a lot of different challenges that tend to be present with an eating disorder such as anxiety.

One concern is that she mentioned that their approach is not FBT but rather CBT and they tend to allow patients to first eat only foods that they're comfortable with.  Given all of effort that we've put into FBT and the progress that we've made, I really wouldn't want to backtrack by giving my D an "out" for not having to eat fear foods.  Take four days ago for example, I brought home a hamburger for lunch on purpose and she reacted like the hamburger was radioactive.  She threw the hamburger across the table, then threw water on it, smashed it with her hands, and smeared it on my hair and clothes.  Yep, trust me, I don't think my patience has ever been tested so much.  It took just about all the control I had to not blow my top and throw the burger back her way. But that's of course the ED trying to get a rise out of me. Instead I told her calmly that she had to eat it no matter how many times she threw it and 2 1/2 hours later she finally said that if I got a new one she would eat it.  I was back 20 minutes later with another hamburger and she ate the whole thing in about 5 minutes.  A few weeks ago we would have been there for about 6 hours.  And I will be back with another burger this week.  So I wouldn't want someone in a few weeks to tell her that she doesn't have to eat her fear foods.  But fingers crossed that they are willing to work with us and meet us where we're at.

On a different note, my D will not stop calorie counting and what's making this a whole lot harder is that many restaurants now print their calories on the menus!! It's not just one place, most of the restaurants that we go to (even Starbucks) now have the calories in gigantic letters on the ordering menu.  That is just so not helpful. So my D is still completely obsessive about calories and they're absolutely everywhere.  We could just always eat at home, but I'm trying to get her out of the house.  Is there a way to discourage calorie counting? Does this ever quiet down? 


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Mamaroo
You did so well with the hamburger, high five!!!!!! I had an ensure poured over me once so I know the feeling.

I hope the PHP program is able to work with you and add more FBT to their CBT. Sounds like a good program otherwise. 

As for calories being displayed it is such a pain. A while ago my d asked if we could go to a small, family owned restaurant instead of one of the better known chains. I said yes immediately as the family restaurant doesn't have any calories printed,  but later I wondered if it still stressed her out to see the calories. At the family restaurant she was able to order higher calorie food, which she had trouble with at the other place. So my advice would be to go to independent restaurants which don't have calories posted or to order take out (you choose, or ask her to pick but not showing her the calories) and the eat it at a park/beach/. If you go to a food court you can ask her to find a table for you while you order. 
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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ValentinaGermania
tp7 wrote:
For example given how she's terrified of walking outside, he has told her that he will throw her over his shoulder and walk down the street with her if she doesn't walk out of the house on her own two feet.  It has worked in the sense that she will now walk out of the house on her own because she thinks that he actually might do it and she's even more terrified of that.


Sometimes it helps them to show them that you will make it impossible to stick to that strange behaviour and that is what hubby did. The goal is to get her out of the house and what ever is needed to achieve that would be fine 🙂.

tp7 wrote:
One concern is that she mentioned that their approach is not FBT but rather CBT and they tend to allow patients to first eat only foods that they're comfortable with.  Given all of effort that we've put into FBT and the progress that we've made, I really wouldn't want to backtrack by giving my D an "out" for not having to eat fear foods.


You are totally right, that would be a huge step back and I would not do that. If I had waited for my d to feel "comfortable" with the food she would be restrikting till today...

tp7 wrote:
Take four days ago for example, I brought home a hamburger for lunch on purpose and she reacted like the hamburger was radioactive.  She threw the hamburger across the table, then threw water on it, smashed it with her hands, and smeared it on my hair and clothes.  Yep, trust me, I don't think my patience has ever been tested so much.  It took just about all the control I had to not blow my top and throw the burger back her way. But that's of course the ED trying to get a rise out of me. Instead I told her calmly that she had to eat it no matter how many times she threw it and 2 1/2 hours later she finally said that if I got a new one she would eat it.  I was back 20 minutes later with another hamburger and she ate the whole thing in about 5 minutes.  A few weeks ago we would have been there for about 6 hours.  And I will be back with another burger this week.  So I wouldn't want someone in a few weeks to tell her that she doesn't have to eat her fear foods.  But fingers crossed that they are willing to work with us and meet us where we're at.


High five for that!!! You did great! And yes, serve it again this week!

tp7 wrote:
On a different note, my D will not stop calorie counting and what's making this a whole lot harder is that many restaurants now print their calories on the menus!! It's not just one place, most of the restaurants that we go to (even Starbucks) now have the calories in gigantic letters on the ordering menu.  That is just so not helpful. So my D is still completely obsessive about calories and they're absolutely everywhere.  We could just always eat at home, but I'm trying to get her out of the house.  Is there a way to discourage calorie counting? Does this ever quiet down?


Here is my experience with that. My d was extremly calorie counting and she has the calories of the most food items in her memory now and will not ever forget that information as she has a very good memory. Her brain sucks in all information since she was born and she knows everything she has read or heard somewhere in the last 19 years. So she will not forget that information about calories.
BUT: since brain recovery started she uses this positive. She looks on the paket informations about calories but not obsessive but to make sure that the snack she wants to eat is enough or wether she must add another food item to have a good snack. She does not freak out any more when there is no information on something available (in a restaurant or bakery here for example) but then compares it to food items she knows and again uses it to make sure she eats enough.
She is not adding all the calories any more, we have a range what a good meal or snack must at least contain and she makes sure that she eats that and nothing less. It was last week when she came to me and said what a silly thing it was to waste all that energy and time on calorie counting 2 years ago...
Keep feeding. There is light at the end of the tunnel.
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HopeNZ
Tp7, you are doing a hero's work! You've had such great advice and suggestions above about your d's anxiety and the possibility of the PHP place in a month's time.  

I'm thinking about your younger, non-ED son, and some of your earlier posts about your concern for him.  It's lovely that you're making special time for him in the early mornings. Could you extend this by having little dates with him at other times? Slipping out just the two of you for a quick hot chocolate or to kick a ball in the park for half an hour? Could you post little love letters, or tiny gifts, to him, to make him feel special? Could you start a craft project together and carve out a quarter of an hour here or there to work on it with him? Develop in-jokes that only the two of you share?  As well as talking to him honestly about your d's illness and acknowledging the impact it's having on him, while also reassuring him it's temporary, can you make sure you have conversations that are nothing to do with her/ED? Spending time with him alone would mean your hubby would need to step in and be with your d for short spells and you've mentioned that you sometimes have doubts about his methods, but it could be beneficial all around! And if you decide to take the PHP place, you could continue your dates with your boy while your h takes time off work and spells you out at the centre. 

I read something years ago about being a busy mum with young children: when they're clamouring for your attention, give it to them - all-out 100% undivided loving focus - for four (?!) minutes. This will fill up their tank until next time. I find this works with people generally 😍.

The last thing I want to do is increase your burden. My son's sense that we abandoned him while we focussed on refeeding my d is a lingering sadness for me.
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mjkz
What does your daughter think of doing the partial program?  If she is not willing, it could be a way to move her forward in other areas i.e. you need to participate more in life by doing X and if you can't do that, then we need to do the PHP.
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MargieMom
Hi tp7 — Before I (belatedly) respond to your meds question, I just have to say you are officially my hero mom due to way you handled the burger incident!  I don’t think I could have not blown my top. Well done!

So, the meds question is complicated. My d is now off olanzapine, still on fluoxetine  (Prozac). Hospital doc put her on it; residential facility, where she’s been for 1.5 weeks now, took her off, preferring herbal anti-anxiety meds (valerian root, I think).

When end she was on the two non- herbal meds, we thought we saw a change at first, but D is still pretty low and anxious at meals.  So I would say it is really hard (impossible?) to know how much of her mental state is mostly the environment, the starved brain, or the meds (or most likely a combo). The bump up in mood we witnessed might have been just getting discharged from the hospital, which she hated. I was interested to hear from other carers that the anti-depressants worked better after WR. I look forward to that. But like so many have said and the research seems to bear out, I do feel food is the key. And, from what everyone says, time. So, I guess I wouldn’t worry about the meds. You are doing so well on the food, and everything else.

But I do wish you and your family some respite somehow. This is no walk in the park. With my d in residential now, I can tell you the level of peace in the family is amazing. My 8 year old is not breaking down in tears at the dinner table. I know this is just postponing the inevitable; we’ll be back in the trenches soon enough, esp. with no local “step down” PHP or IOP options available locally, but we are so grateful for the break.  We still feel conflicted, given d is skipping meals there and barely gaining, when at home we had full compliance with FBT (avoiding hospital was huge motivator), but the stress and 24/7 monitoring for our d’s escalating behaviors was scaring us. We felt way above our pay grade, and the facility has years of experience and is well regarded, so we are giving it the benefit of the doubt for now, and meanwhile we are trying to bank the peace so we’re charged up and ready to go back to FBT when she’s back.  

I say all this b/c I wish you some peace, too, and hope the PHP option might provide a break. Others might disagree with this, but even if the program is not ideal with the food choices, it might be worth it for *you*.  And you could continue with the food challenges for meals at home, assuming she’d be home for some.  Keep up the great work. You really are inspiring!
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tp7
Hi everyone,
  
   I wanted to write sooner but I've had my hands more than full over the last few days. 

Thanks for your suggestions and perspectives regarding calorie counting.

 I really love your suggestions regarding making my son feel more loved HopeNZ, I'm definitely going to follow them.  If anything I am more concerned for him than I was before.  He has started to copy some of my D's ED behavior.  My H thinks that it's just to draw attention to himself because he feels that his sister is getting so much of that attention.  We've tried to address it by giving him more attention, but I'm honestly not sure of what to make of it. All of a sudden out of the blue he started bursting into tears saying that he was fat (he is actually very thin) and saying that I'm feeding him too much.  

 

Ironically enough, he was always my picky eater and it was always his eating that I was worried about.  He's 9 years old now, but from the age of 3 he always had a super sweet tooth. He would always eat snacks and then not want to touch his dinner, or walk away from the table 10 times because he just wasn't interested in his dinner.  So I would actually hide all sweets, cookies, or crackers from him because he would always fill up on those while I wasn't looking. However even when I did this I never had a ton of success in getting him to eat all of his dinner, he would always just nibble at it and then lose interest.  But when he doesn't eat much of his dinner he still eats cereal, cheese or yogurt as the night progresses.  Ironically enough this type of behavior hasn't stopped.  He is constantly looking through the cupboards or fridge for a snack.  But he never ever expressed any concern about body image or weight before my daughter's ED and now he's saying that he's fat.  Has anyone experienced any sort of attention seeking behavior from siblings? I seriously hope that's all this is...

My in-laws are in town to help out and I'm very grateful for the help, but they're in their 80's and not always aware of what they say or do.  On top of that, my mother-in-law has her own emotional limitations as we only found out when my D was diagnosed that she herself was actually hospitalized in her 30's for anorexia.  On the one hand my D has a special place in her heart for her grandparents and that is a huge motivator. If they ask, she will do things for them that she won't do for anyone else and that has been very helpful.  But on the other hand I find myself having to handle my mother-in-law's emotional needs and limitations on top of everything else.  For example, my MIL has been making dinner in order to help out, which we're very grateful for.  I usually serve my daughter the entire meal at the same time because I know that she won't accept "add-ons" half-way through the meal and it leads to a fight. On several occasions, half-way through the meal my MIL brought out a bowl of fruit salad for everyone to have afterwards.  Well of course my D refused to have it.  So after this happened a few times, I asked my MIL if she could just let me know when she makes fruit salad so I could give it to my D at the same time as the rest of the meal.  Her response? "Well, you saw me chopping fruit this morning".  Seriously?? So I said that I had not really paid too much attention and that my D needed all of the food presented at the same time and if she could let me know anyway.  She just repeated herself again, saying that I had seen her chopping fruit that morning.  And then she ran to the bedroom crying.  I was so frustrated....so I left and went to the movie theater to see a movie on my own, I really needed a break from it all.  But I basically realized that I have another person's emotional fragility to handle on top of everything and it's just too much. Taking care of my D in the state that she's in is hard enough. I thought about talking to my MIL about it, but experience tells me that's not going to help and my H agrees.  He's never had much luck getting through to his own mom.  So the only solution I can think of is to shorten my in-laws stay, and that's what I think will happen.  

And now for how D is actually doing...although overall the trend is better there is very much a daily struggle.  In terms of food, I've been diligently giving my D several fear foods and her total meltdowns are gradually being replaced by an initial refusal but gradual acceptance (without crying or screaming).  Instead I'm just told that I'm "the worst", which I'm totally ok with.  However there are moments that just break my heart. D has a cold right now, so she asked for cough drops and I bought her some.  At the end of the day she suddenly looked at the bag of cough drops and realized that each cough drop has about 10 calories and started begging me to deduct those calories from her next snack. Of course I refused, and she sat there eating her snack sobbing about the "additional" calories that she'd had from the cough drops.  I felt so sad, what kind of horrible voice inside is telling her to feel so bad about some cough drops??

I have also realized that she's really scared of growing up and of the physical changes that her body will be going through.  It really feels like I'm playing a game of whack-a-mole, where as soon as we address one way in which the anxiety is presenting itself it pops up in a different way. 

I apologize for rambling, it just feels like the ED morphs and spreads its tentacles everywhere it can!

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ValentinaGermania
"Ironically enough, he was always my picky eater and it was always his eating that I was worried about.  He's 9 years old now, but from the age of 3 he always had a super sweet tooth."

Mine was the same and if I can dare to say that that is one of the positive outcomes after surviving ED and having magic plate, she eats now a great variety of food with pleasure and even tries new things which she never did before.
Keep feeding. There is light at the end of the tunnel.
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tp7
Ok, we feel so stuck right now...D (13) is weight restored (I think).  In terms of growth chart percentile she had always been 32-36th pre-ED and now she's 52nd....she doesn't fight me much on the eating, or if she does it's passing and she does eventually eat.  There are of course some fear foods which are more difficult and there is still zero intuitive eating.

Where we still feel really stuck is in terms of just everything else. D has really bad body dysmorphia and refuses to go back to school or see any friends or go anywhere without a hoodie on.  She says she looks horrible and therefore she can't see anyone.  She has only been WR for around two months, so maybe it's early days still?  But her thoughts are incredibly rigid, she won't allow even an extra drop of sauce to be added to her plate in the middle of dinner (I sometimes try this as a litmus test to see where her mind is at).  She counts calories all the time as well.  She had a dental appointment today and had already said that she wouldn't go (I have no idea why).  As the appointment was right after lunch, sure enough she didn't eat her lunch. She knew that if she refused her food long enough I would have to cancel the dental appointment, which I did have to do and only then did she eat.  The total dysfunction is driving me completely bananas. I can't even get her out to a doctor's appointment. We've tried several things to get her to go to school, but so far no luck.  She was an excellent student before, so we're baffled. She says that she can't face anyone looking the way she does.  Our concern isn't really with grades or missed school material, it's with trying to get her to be a normal teenager again and be with other kids.  At this point I'm starting to wonder if she's got BDD on top of everything, or whether it's part of the anorexia. 

We've also thought of bringing friends over and surprising her, but we're afraid that this might backfire.  If she's caught off-guard she might have a total meltdown and her friends might get scared, which would then create a genuine issue for her at school.  On the other hand, whenever we float the idea of having a friend over to give her time to warm up to the idea she says that she'll stop eating if we bring anyone over.  

So in short, D is WR but unable to function...it feels to me like all of this other stuff is totally the ED fighting for control in other areas.  It's frustrating though, because I can't physically force her to do anything.  We've taken away TV, phone and internet in an attempt to make it as boring for her as possible at home and encourage her to go out.  However she then manages to spend time playing with the cat instead, anything to avoid having to leave her "safe" bubble.  She has also refused medication completely and we haven't been able to convince her to take any.

D has made progress, two months ago when she came out of IP and she was practically catatonic.  She wouldn't eat and she just sat in the corner shaking. She couldn't even focus on the television.  Now (after much effort) she's eating and she'll happily watch TV for hours if we let her.  She will also play with the cat and joke around with her grandparents.  But any motivation to engage in real life is gone and we cannot move her from that. I'm concerned that if we let her stay in this state she will isolate herself even more.  So I continue to fight it every day, but no matter what I do I can't seem to get her interested in re-engaging in the outside world...

Are we expecting too much too soon? 
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ValentinaGermania
When I read your post there is half positives and progress and the other half about her socialising behaviour is sad but I can tell you quite normal for that state. It is really early days. She cannot have extras in that state. They are rigid for a very long time and that is why giving back freedom too early is so dangerous. It took about a year after WR before my d started to take few extras. Try to be patient with that. As long as you see some progress it is all good.

I would try to get her out although she does not want to. I asked my d to accompany me to the do it yourself shop because I need her "help" there. Be ccreative 🙂.
It is not o.k. to quit drs appointments as the dentist. Have a new one asap. She should not learn if I refuse to eat I do not need to go to the doctors. Make an appointment at the end of the day if possible so that most food is in at that time. Have another adult around to get her into the car if necessary. And do not forget to lock car doors, some here had kids jumping out of a running car. Gosh, they do so crazy things in that state...

School is really not important at the moment and maybe she can cope better to see some friends in one or two weeks so maybe worth to wait a bit and then have a new start. Can you start with a cousin or another family member she likes very much? That will not be annoyed if she is send away again because you can tell her before that this could happen? Can you meet a cousin or so "by incident" in the mall?
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
I also see some positives. She appears to be weight restored. She has gone from catatonic two months ago to isolated and withdrawn- believe it or not that is a positive. 

My D also refused to go back to school after discharge from hospital as she was "too fat" and couldn't be seen. For my D she was still very depressed and suicidal, having had several attempts - so I was in no rush to get her back to school. We allowed full time at home, quiet activities. I also slowly introduced activities getting out. For my D going for walks with her new puppy was a big thing, a bit harder with cats but it can be done. She also was reluctant to see friends, but I did arrange some play dates. I think it would depend a lot on the friends and their understanding of ED before I invited them over. She may do better with small activities with older people. Insist on going out and getting some sunshine - vitamin D deficiency is very common in ED, but it can make her get out of the house too. I also agree with insisting there are some non negotiables - regular doctors visits / dental visits and check ups are some of those. 

It took my D 6 months before she was ready to go back to school from this point. She was terrified at first but by the end of first term she was really enjoying being back there. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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ValentinaGermania
My d was also terrified before she went back to school. We arranged that she could go back after some holidays so not in the mid of something. We invited some class mates to visit us before so she was a bit socialised again. She went only half days for the first weeks and had no tests for the first months. When she went the first day she was very frightened but when I fetched her up later and asked her how it was she said "good". And went again the next day as if there never was a problem...
There is no need to hurry with that. ED kids are often highly intelligent. She will get that stuff when she is ready for it.
Try to see that ED tries to punish her with isolation. Maybe that helps you to force her a bit to get out of that cocoon. It is ED that wants to isolate her. Your d inside wants to have contact and be back to life.
Keep feeding. There is light at the end of the tunnel.
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sk8r31
I wonder about the possibility of volunteering with an animal shelter, or visiting seniors?  Not with her peer group necessarily, but volunteer work can instill a sense of self-confidence and pride at being helpful to others.  You and your d have made some great strides ahead, some small steps forward to getting her out of the house with a prescribed goal or task might be a way forward.

Sending warm support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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ValentinaGermania
Or maybe there is a neighbor that has a dog she can walk or a younger kid in the neighborhood she can help with schoolwork? That would make her feel necessary for someone and important and maybe help with self-esteem?
Keep feeding. There is light at the end of the tunnel.
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workingthrough
We have an s, same age as your d, and similar time line. We’ve been WR just a few additional months, however. I think S hit “WR” in Dec/Jan. We have continued to push his weight higher. Has your d grown any height by chance? With s, he continues gaining, growing in height, and then we need him to gain more - it’s been a cycle! 

S had/has a beloved hoodie as well, only thing he’s worn all year long. He also refused showers. We worked on his weight first and then added behavioral challenges just like food challenges once he was WR: showering once a week, (we covered all mirrors), showering twice a week, taking his hoodie off for a movie at home, etc. etc. He finally!, just weeks ago, went a whole day without that hoodie on his own accord. From there, he’s now up to going an entire week+ without it. It’s miraculous. 

For s, our team just kept telling us body dysmorphia is the very last to go. We’ve had to just keep his weight moving up + up and  lots of fats. Perhaps her weight needs to be a little higher going into puberty as well? 

Do you have any close friends that she might run an errand with? I love the idea of service/volunteering, maybe a meals on wheels route also? S continues to struggle with going out and gets worked up esp. before activities. 

I’m sorry to hear about your younger. We have a younger that same age and very similar w/picky and light eating. Our guy made those comments over ~week or so as we were refeeding and we were scared to death. We met our younger for school lunches to surprise him w/ a few of his favorite meals. Like our older, we pushed his calories up just a bit. It seemed to be a quirky couple weeks but he moved out of it. 

Sure thinking of you. You’re in the thick of things right now. I wish we knew you in person and could help. It will get better, it’s just time + food most of all. Wouldn’t it be nice to fast forward sometimes?! Make sure to take time for you, if PHP helps you breathe it might very well be worth it. This is an exhausting trek - but you’re doing it + doing wonderfully!! 
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tp7
Thank you all for your insight, I really like your ideas.  D loves animals and volunteering at an animal shelter or walking our neighbor's dog might help.  

We had quite a night tonight.  We went out to eat to get D out of the house and she insisted on having brown rice instead of the white rice that I ordered her.  I know that she thinks of brown rice as "healthier" and white rice is harder for her to eat, which is exactly why I ordered it.  And sure enough the ED came out in full force. At first she refused to eat it.  The rest of the family started saying that they could go for a walk in order to wait for her.  But we had two cars so I told them that they could go back home and that I would simply stay with D until she ate.  And that if that meant having to explain to the waitress the situation and staying at the restaurant until closing time, I would be fine with that.  D started eating right away after hearing that, I'm guessing that's because she didn't want me sharing anything with the waitress. However she did this while subjecting me to an incredible amount of nastiness and obscenities.  Then she kicked me hard under the table.  For the record, this is coming from a child who before ED would never ever talk to us the way she does now when she goes into meltdown mode.  But now it's like a Jekyll and Hyde situation, she'll be fine one minute and suddenly flip the next.  So after she ate I drove her to the police station.  I told her that I was in no way going to take physical attacks.  The station was closed, but my goal was to drive the point that I'm not going to take that sort of behavior.  

On the way home we had to pass right in front of her friend's house, so I slowed down in front of her friend's house to try and just familiarize her with the house again since she used to spend so much time there.  To my horror she opened the door of the moving car and said that either I turned around or she would jump out.  She did thankfully close the door again. Tina72, coincidentally I thought of your comment beforehand about kids jumping out of moving cars and I tried to lock the car door as soon as D got in, but unfortunately I couldn't override her unlocking it.   She then started sobbing saying that she looked like a "monster" now and could never see anyone again. The dysmorphia is so bad right now, your comments regarding time + food are what gives me hope. Rational conversations about how she actually looks fine and not at all like a monster go absolutely nowhere of course.  

Workingthrough, I'm so happy that your son has gone an entire week without the hoodie! That's really great!  It gives me hope to hear that. :-)

In the end , my H talked to D for about an hour and after she calmed down she actually said that she admits that she has an eating disorder and that she wants to get better!  That's a first.  She has never even come close to admitting that anything is wrong at all, and much less expressed any desire to get better.  I broke down in sobs when I heard that.  

I'm also taking my younger son to Equine Assisted Psychotherapy on Monday, I'm hoping that it'll help him deal with everything that is going on at home.  Much of the therapy is just getting to be with horses, and since he's only 9 years old I figured that it would be more fun for him than sitting in an office talking to a therapist.

In short, I guess it was just another day of fighting this horrible disease!

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ValentinaGermania
tp7 wrote:
Thank you all for your insight, I really like your ideas.  D loves animals and volunteering at an animal shelter or walking our neighbor's dog might help. 
 

So try that. This could give you some special time together that is not food related and could improve your relationship, too.

tp7 wrote:
But we had two cars so I told them that they could go back home and that I would simply stay with D until she ate.  And that if that meant having to explain to the waitress the situation and staying at the restaurant until closing time, I would be fine with that.  D started eating right away after hearing that, I'm guessing that's because she didn't want me sharing anything with the waitress. However she did this while subjecting me to an incredible amount of nastiness and obscenities.  Then she kicked me hard under the table.  For the record, this is coming from a child who before ED would never ever talk to us the way she does now when she goes into meltdown mode.  But now it's like a Jekyll and Hyde situation, she'll be fine one minute and suddenly flip the next.  So after she ate I drove her to the police station.  I told her that I was in no way going to take physical attacks.  The station was closed, but my goal was to drive the point that I'm not going to take that sort of behavior.  


I am totally impressed that you did that!!! 👍 That is the ONLY language ED understands. You did perfect!

tp7 wrote:
On the way home we had to pass right in front of her friend's house, so I slowed down in front of her friend's house to try and just familiarize her with the house again since she used to spend so much time there.  To my horror she opened the door of the moving car and said that either I turned around or she would jump out.  She did thankfully close the door again. Tina72, coincidentally I thought of your comment beforehand about kids jumping out of moving cars and I tried to lock the car door as soon as D got in, but unfortunately I couldn't override her unlocking it. 


Check that today, it is possible to lock the doors so they cannot be unlocked again. Look into your cars manual or ask someone. This is REALLY dangerous and I did never think that she would do that but safety comes first. We also locked windows in my ds bedroom and kept front door locked so she could not run away. They do REALLY strange things with this disease...

tp7 wrote:
I'm also taking my younger son to Equine Assisted Psychotherapy on Monday, I'm hoping that it'll help him deal with everything that is going on at home.  Much of the therapy is just getting to be with horses, and since he's only 9 years old I figured that it would be more fun for him than sitting in an office talking to a therapist.


That is a great idea and I think he might like that a lot. Maybe you can take your d to watch him there next week and she might like to see the horses there too. There is no better therapy than to touch a horse...😉

tp7 wrote:
In short, I guess it was just another day of fighting this horrible disease!


Take it one day after the other. It will get better. But the progress is so slow that you do not see it at the start. I think it is progress that you stayed strict with the rice. That you dared to drive to the police station. That you learned that locking the car doors is needed. That ED did not WIN this day. Think about marking your calendar. It helped us to see the progress better. Red for bad days, yellow for normal ED days and green for good days (yes, they will come!).
Keep feeding. There is light at the end of the tunnel.
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Mcmum
Tp7, I have tears in my eyes reading your last post.  So amazing that your daughter admitted that she had an ed! What a huge step.  Hugely admire your strength and resilience.  Good luck with the horse therapy for your son. Horses have helped a lot with my ed son who is a similar age to your youngest . Camhs said to us that talking therapies are unlikely to work with children that age but my son spent a week last summer on a stud farm and has recently spent a lot of time around horses and something seems to melt in him at these points. 
Wishing you lots of strength, courage and luck. You and your family are very lucky to have each other xx
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