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tp7
Hello, 

It's been a while since I've posted and I could really use your collective wisdom.  My 13 D was diagnosed back in February with AN.  She spent a month at IP back in February. 

She eats very begrudgingly and complains at every meal, but for the most part she eats.  Psychologically however my D is SO stuck.  Over the last few months she has developed a horrible defiance and an absolute need for control, to the extent that she will stop at nothing to prove that she's in charge.  It's almost like now that she has had to give up control of the food, she needs to reassert control everywhere else. I love her with all my heart, but I have to say that I'm thoroughly exhausted by her attitude.

She has refused to go to school since January, says that she will never go back to her old school because she now looks "different" and doesn't want anyone to see her.  She hasn't shifted from that mindset at all in all these months. She did a partial hospitalization program for 3 months and all she did there was drive the staff crazy with her oppositional behavior with even the tiniest of requests. For example, if she had to sign a form to agree to any assessment, she would instead draw a picture of Mickey Mouse on the line.  She would also refuse to do anything that they asked.  

  I suspect that she's also got body dysmorphic disorder, as she seems to accumulate ideas of various "flaws" in her appearance as time goes on and she obsesses about them non-stop.  She has completely and totally cut off contact with friends and threatens us with not eating at all if we even consider bringing any of her old friends around. 

Given all of this, most professionals are recommending a higher level of care such as a residential facility or yet another partial hospitalization program, except she's outright refusing this time around and we're finding out that in reality there is little we can do. We drove 6 hours to a residential facility only to have to come back with her because she refused to consent to treatment.  No one will take her against her consent, and she certainly isn't consenting to treatment beyond the odd FBT appointment that never addresses her dysmorphia or oppositionality.  She's also refusing any and all medication because she's convinced that it will make her "fat" and we can't seem to convince her otherwise.

On the one hand I see how sick she is and I feel very frustrated towards her AN and the stunts that she has pulled over the last few weeks to dodge treatment right and left.  My husband's theory is that he's doubtful that any of these places will do much for her anyway, because we've been down that road a few times with very little progress given her lack of willingness.

There is a very small and extremely expensive school for children with anxiety disorders and ADHD that D is actually willing to attend. This place is tiny, there are only 6 children in her grade level.  But it's a huge financial strain on us and they want a year's commitment no matter what.  I'm really not sure of what to do, my D is so volatile that we could commit to this place for a year and then she could decide 2 months in that she's just not going back and we're on the hook for the entire year.  

My H however thinks that after months of treatment that have led nowhere, the best therapy would be for her to feel like a normal kid going to school again.  He thinks that if we don't send her to this place, she will just be at home all day looking to wind us up. He also thinks that given that this school is the only thing that she's shown interest in since being diagnosed, we should be all in despite the financial strain.  They do provide meal supervision, so that's a plus.

I'm looking at this like "school vs. more treatment", but my husband thinks that I'm not being realistic and it's more like "school vs. nothing at all".  

Do any of you feel that continuous treatment despite total lack of willingness goes anywhere?  Or are we better off putting our energy and financial resources into this new school, while trying to figure it out at home despite how severe she is?
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tina72
First question as always: is she truely WR? It does not seem to me that brain recovery ever started in that time...
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
You mention on another thread that she is at a significantly higher weight percentile than she was in the past. Is this still the case? 
It can be really difficult when their mental state is still so focused on their appearance, especially when there is strong opposition to treatment. At the same time the real positive is that she is continuing to eat, albeit with some resistance. Do you think that perhaps that she could do with an increase in weight and adding more fats to her diet? Has she grown at all? She is at an age when many girls are growing extremely rapidly. 

There are a few negatives I can see with the school situation. Although if she went they would supervise meals, are they really aware of how hard it is to get her to eat. What happens if she refuses to eat there and you need to bring her home? Keeping her home is still treatment. She is getting love, support and food. Could she do distance education? It can take a long, long time for them to mentally adjust to their new body, and given she is pubertal as well there is even more adjustments to be made. Perhaps not making a big deal about her social life, engagement in treatment is a way forward for you. Let her know that when she is willing to accept help you will arrange it, but meantime you will keep her safe and she has to eat all meals?
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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sk8r31
It sounds like a very challenging situation, and I can understand that you feel very 'stuck'.  As foodsupport says, she may be getting ready for a growth spurt and may require more weight.  It's great that she's eating but the oppositional behavior is an extreme challenge.

What are other motivators for your d?  Is she interested in artistic pursuits? Animals? At age 13, a year prior to dx for my d, she was begging to be homeschooled.  We never did get completely to the bottom of the situation, despite meeting with teachers and counselors, and in the end, I did homeschool her for the last half of 7th grade.  This was somewhat of a challenge, but it was so beneficial for d.  She was completely motivated by school, and completed all her homeschool assignments ahead of time.  She did have an additional month of summer vacation because she completed all coursework early.  However, we did have her attend two classes at the local school: Spanish and art.  This kept her somewhat connected socially but was not stressful.  This worked extremely well.  In the end, she did decide to return to school for 8th grade, and it mostly was fine.  She was dx with AN the following summer though....

I'm sharing our story because sometimes thinking outside the box to create a way forward that could engage your kid can be helpful.  Perhaps others will join in with what worked for them.  I think volunteering in an area of interest can be a great way for kids this age to 'think outside themselves' and can gain self-esteem in areas of their life that they haven't yet tapped into.

The main thing, of course, is continuing to eat meals & snacks and getting brain healing to happen.  Managing the other stuff can be hell though, so figuring out the best way forward is the trick...

Sending you warm support.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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mjkz
My daughter was very similar.  It was like she went through her terrible twos at a much older age.  She said no to everything almost as a reflex and then would say wait, yes!!  I do want to do that but no was the first thing that came out of her mouth.  She also was very gamy and it was truly a horrible time for all involved.

She says now she did it because she truly had no sense of what she really wanted to do and yes she did want some control over her life.  Once her "control" (and I use that term lightly but her own perceived control) over food was gone, she fought to control everything else.  I learned pretty quickly not to engage with her on things she would dig in on.  If it truly was a choice, I'd give her the choice but something like school at age 13 is not a choice.  She has to go to school until 16 by law and maybe you need to call in someone to explain that to her (someone besides you like a truancy officer).  If you truly can afford the school she wants to go to, I'd have a sit down with her and tell her that you'll pay as long as she knows this is a year commitment and she can't back out if she agrees to go.  Obviously if the situation falls apart around food and monitoring meals, you might have to pull her out or go eat the meal with her there but I would do a walk through with her at the school so both of you can get a sense of what it will be like.  If she wants to go and will commit to a year (get that on paper just to make it official), then I'd go for it.
If she is weight recovered and you're waiting on brain healing now like I was, normalcy for everyone was how I chose to go.

With my daughter, I would take her places and if she wouldn't get out of the car, then she sat in the car while I did things.  I stopped asking her if she wanted to have friends over and just invited them myself.  Once there, my daughter did enjoy having them there but couldn't make herself agree to seeing them.  I didn't fight with her on the clothes.  Slowly as she got more comfortable, she did stop wearing the bigger stuff but even today she likes oversized stuff and is it really that important what she is wearing?  To me it was not worth the fight.  I learned to choose my battles and stick to the things that counted the same way I dealt with eating.  My daughter still had to see her doctor.  When she refused to get out of the car, the doctor went out to the car to see her.  We were lucky in that way but that was how we dealt with things like that.  As far refusing to eat if you invite her friends over, I'd confront that right away and get it over with.  She could play that card for so many things and if she is going to stop eating, she is going to stop so just do it and get it over with.  My daughter also threatened to kill herself or cut herself if I did things.  She found out quickly that threatening suicide was a fast track to inpatient treatment and that stopped pretty quickly.  I would explain to her that I needed to keep her safe so off to the ER she went.

It did get better for us. As she got more used to her new body and found things that interested her, she really calmed down but it was not a quick process.  I don't have other children but I would not let her stop you from enjoying life with your other kids.  If she refuses to go, leave her home. If your son wants a party for his birthday, give him the party and if she makes a scene, she makes a scene.  I just treated my daughter like a toddler having a tantrum and moved on.  It is such a hard time when they are like this though.
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tp7
I would like to thank you all so much for your thoughtful replies, this is the most supported and heard that I've felt in a really long time. 

Regarding D's weight she had gone from 42nd percentile before AN to 56th percentile this last April in terms of BMI, but even though her weight has remained stable she's down to 51st percentile because she's 6 months older. I'm now back to trying to increase her weight.  She was hugely resistant at first, but she has been accepting the larger snacks over the last few days.  So that's certainly something to keep working on.

Regarding how difficult it is to get her to eat, this potential school is not really set up to treat eating disorders so they would just send her back home to me if she doesn't eat.  She knows that she has to eat to be able to go so she has been eating her lunch under their supervision so far (trial days). But I have no doubt that they will call me at some point telling me that she's refusing to eat and I will have to pick her up.  They seem to be ok with this arrangement though.  Her previous school doesn't have the resources to monitor lunches, let alone call the parents of every kid who didn't finish their lunch.  But this school is so small and teachers already have to sit with some of the children who have sensory issues anyway, so it's not a stretch for them to supervise D's lunch. 

Foodsupport_AUS, thank you for highlighting that keeping D home is still treatment.  I have been so busy trying to get her any professional help that I can find, but my H is right in that we're not sure that any of it has had an impact.  While I agree with him, it feels like her anorexia is still so severe and mental health so poor that maybe she requires more than we can give her at home....but what?  I haven't come across any professionals with a magic wand yet, and some of them do more harm than good.  The dietician at D's last partial hospitalization program asked if we could skip morning snack because she kept forgetting to give it to her since she was busy at that time of the day.  ?!?!?!  Then when I replied in no uncertain terms that "no, we couldn't skip it", she still went around my back and just started giving it to D together with lunch, theorizing that the total calories were the same in the end.  By the time I found out about it, D had become hugely resistant again to the psychology of morning snack.  And this is supposed to be an eating disorder center.  I complained to the person in charge about it, but they didn't seem overly concerned.  

I have to admit that the more professionals we see, the more alone I feel. They're all first overly confident that they'll get D sorted out in no time, then they eventually realize what they're actually dealing with, at which point they pretty much find a way to say "We don't really know what to do but your daughter is too oppositional for us and we've never seen a case like hers, good luck with that.  Good-bye."  One psychiatrist in particular just lectured us last week for 2 hours on how my D has become so oppositional, that even if she wanted medication he wouldn't give it to her because there is no point in treating her until she's no longer oppositional. No suggestions, no brain-storming, no support from him, just criticism. Oh, and he told D that she should just listen to him because he's got a PhD...I couldn't believe it.  

sk8r31, you're right, thinking outside the box is key in these situations.  I think that I'm coming to terms with the idea that a way forward doesn't have to be how I imagined it. I had always assumed that D would go back to her old life (school, friends, hobbies), but she has given up all of those and shows no sign of getting back into these things.  We also can't seem to get to the bottom of it.  But when we take her to the school parking lot, she just starts to hyperventilate and scream at the top of her lungs. So we can't even get her through the doors. She just says that she doesn't want people to see how she looks different, but keeps saying that there was no bullying of any kind or any other issue before.  I did, however, find out that the other girls at her lunch table were encouraging each other to eat a "healthy" small amount at lunch (in their words). So I suspect that the eating disorder was somehow tied to feeling socially accepted by others, and now she feels like she wouldn't be if she goes back. We suspect that at this point she really wouldn't have the skills to navigate through those situations in a healthy manner anyway.  We did consider homeschooling, but my husband is a cancer patient and I need to work in order to make sure that he has access to medical care when he needs it.  In terms of interests, D has given up all hobbies (like playing the piano). We can't get to the bottom of that either. She can no longer articulate any desires for the future, which makes me so sad.

mjkz, thank you for making me feel like I'm not the only one with these issues related to oppositionality. She wasn't like this before AN, but it's a trait that she seems to have developed over the last few months.  In fact, teachers use to describe her as a "rule follower".  We have tried several "contracts", only to have D backtrack the very next day and not care one bit whether it was written down on paper or not. D also figured out that the inpatient clinic won't take her if her weight isn't low enough, because we did try to send her back to inpatient after she stopped eating for a day and they wouldn't take her.  We did call a truancy officer to try and talk to her, but we found out that they also have no way of physically making someone go to school if they don't want to.  People from the county came to talk to her to tell her that if she continues to refuse to go, she could even get sent to a truancy program or end up in foster care (they were trying to scare her a little I think).  She still wouldn't go to school.  So taking her to this other school does put a financial strain on us and it's certainly a stressor, but H feels that it beats having her sit at home doing absolutely nothing for days on end because that has been terrible for her self-esteem. I'm glad to hear that the oppositional behavior got better with time, it gives me hope.






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mjkz
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We have tried several "contracts", only to have D backtrack the very next day and not care one bit whether it was written down on paper or not.


Mine too.  Most of the contracts I gave to her weren't ones she needed to sign but for this school I would get it on paper and make it very clear that she has to go back to her previous school if this one does not work.  Then you take her to the old school and let her scream if that's what she wants to do.  I opened all the windows so it attracted attention which is not what she wanted so in the end it ended up working.  Honestly I'd be inviting her friends over and working on that with her. The longer you let her not do something, the worse it becomes in her head and that just increases her anxiety.  You might also make her attending this school she wants to go to conditional on other things like starting the piano again, etc to her interested in things again.
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PurpleRain
My d did very well in a very small school last school year and they did call me/ text me once or twice about her not eating her lunch. It did worked for us. Sadly the school closed for this school year so I'm sort of homeschooling her, actually one of her former teacher's who was very supportive about lunch is coming to give her lessons and supports with morning snack and lunch twice a week, I also take her to piano lessons twice a week. So far so good (fingers crossed)
13 yo d started to eat "healthy" september 2018, she had a growth spur a bit later, followed by tummy bug. She started restricitng breakfast and school lunch in january 2019 (that we know). We are refeeding at home (succesfully I think) since the beginning of march.
I have found inner strenght, patience and compassion that i did not know I had. Never retreat, never surrender
Just keep feeding
 
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