F.E.A.S.T's Around The Dinner Table forum

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deetz
This is a very real question for me and I'm really struggling. My d is WR but has never gotten out of the ED behaviors and I'm having to be constantly on my guard and making sure she eats what she should. We're 2 1/2 years into treating this and nothing seems to be working. She has absolutely no insight, is as rigid as ever (it's not just food, it's everything and she was like this before ED too). We're trying another therapist to have testing for other things going on (ASD is what I'm thinking), but she doesn't really engage or talk to anyone, so I'm sure I'll get blamed for everything like I always do.

We're probably going to switch back to her pediatrition for weigh ins, because she despises the ED center and doctor that we normally go to, and to be honest, they haven't really helped much anyway. (At their advice, I stopped giving daily ensures and let her go back to dance, which I didn't want to do in the first place.) We told her that we weren't signing her up for dance this year, and that was just another big blow up. We've had several reasons for this: a) she doesn't keep her end of the bargain and tries to leave food behind, b) she's been nasty, mean and ugly to everyone in the house, so we really don't want to spend the money and time on it for someone who just treats everyone in the house like dirt, and c) I don't think competitive dance is healthy for her mentally. It's not like she has a great friend group that she socializes with there. We go to the competitions and she talks for a few minutes with the other girls, but she's mostly by herself (never has been social/a part of a big group, but she used to be more social.) She's also mad we didn't let her go to dance camp (with her metabolism right now she would've probably had to eat like 7000 calories on her own - yeah right!)

I feel like I am propping her up all the time and giving up so much of my time, energy and myself to this bottomless pit, and she thinks she still deserves everything. I'm tired of being the servant to this disease and I know I need to separate her from the disease, but I can't live with this disease anymore. She knows the drill and after all this time, it shouldn't be so difficult anymore. I'm sick of her disease running our house and I'm sick of her brothers walking on eggshells around her. I am not a confrontational person, so this entire process has been super traumatic for me (I've done what I have to do, but it's totally against my nature). I just want a little bit of peace and now we get her trying to bully us to put her back in dance. I am seeing a therapist (and the rest of our family is also), but I resent the fact that she's the one with the problem that she won't acknowledge, and the rest of us have to go into therapy.

I really went off on a tangent from my original question (sorry), but how do we get to the point that she will take some responsibility for her own recovery. Even a little bit would be nice. I feel like this treatment technique has created an entitled brat who doesn't have any skin in the game for recovery.
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mamabear
How old is your daughter? What is her current height and weight?

After 9 years now in the ED world I can only tell you what I have seen over and over again here on ATDT as well as with the many  families I have helped along their journey. 

I am sure you get sick of hearing this- but more often than not the weight is not high enough. Some kids need to get to a higher weight. As much as I hate BMI, it is just a tool for us to use. I have seen many families get their child to a BMI of even 22,23 plus and it is not until that BMI is higher, 24,25,26,27 that they see the turn around happen. Feeding very high fats is essential. I can relate to you with your child being hypermetabolic as mine was too for a VERY long time. She needed 6000 plus cals a day for close to 3 years. 

The fact that she went back to dance (your team did her a huge disservice) means that her body probably had a change in composition- more lean muscle mass than fat. This can often keep an ED kid from getting into recovery. I would stop ALL sports and any major exercise. I am helping a family right now in the exact same position. In this case the number on the scale may be the same, but the body has less fat stores than it needs. Their bodies just don't work normally for a very long time. 

If she is indeed on the spectrum- then that has obviously a huge impact on her ability to socialize and could explain her actions/behaviors as well. There are a lot of parents with kids on the spectrum with ED who can help you navigate that part of things. If you are not already a member- I encourage you to join the FB group "International Eating Disorders Parent Support". It is a wonderful and helpful group and there is a ton of information there as well. 

I know you are sick of it. I know it affects the whole family. I lived it as well. My other kids definitely have had to work through a lot of resentment and guilt. I takes a toll on everyone for sure. It sounds to me like something has to change. I don't know her age but teenagers are a pain in the ass even when they do not have a mental illness and can act like entitled brats. My 15 year old son was a crabby jerk this morning. I texted him after the fact and told him I did not deserve his attitude and he responded with "I am sorry. I am in puberty and sometimes I just feel crabby." also- if therapy feels worthless and like she is getting nothing out of it- then stop it. Take a break. Feed her and get more weight on her. Stay the course. Do not back off. 

So again- without knowing details all I can do is give you some general advice. All I know is my D is now 19 and thriving 8 hours away at college. She was diagnosed at 10.5. We fed her through 9 inches, full puberty, and a doubling of body weight. It was hell. And after she was doing ok with eating, then she did all sorts of risk taking behavior and put us through another hell of worry from like 13-15. I had many many times where I thought she would never leave my house...that I would be taking care of her forever. I totally can empathize with how you are feeling. It is so very hard.
I don't think FBT creates too much independence. In fact, I think it creates TRUST and although the process is hell, it can bring us into a very tight relationship with our kids. They know we have their back and won't give up on them. The FACT is that too often in FBT "independence" is rushed and that is a huge reason that true recovery does not happen. 
Persistent, consistent vigilance!
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Foodsupport_AUS
FBT does not necessarily create dependence but many parents here have found that it takes a very long time for their child to be able to manage to do things independently. FBT as per the manual hand back control of eating in stage 2 which as per the manual starts somewhere around visit 12 13.  https://www.verywellmind.com/what-is-family-based-treatment-fbt-for-eating-disorders-4052371

Not everyone is doing manualised therapy, and certainly not every child is ready for taking responsibility for feeding themselves at this stage. As mamabear has mentioned perhaps her weight is not high enough, though I know of many kids, mine included who needed feeding support for more than three years. Mine only started being able to feed herself at around 4 years. 

I think your plan for further assessment for ASD sounds like a good one since there is a lot of rigidity prior to ED. I also think that being clear about what you will and won't support is also important. I think we all want ED out of the house as fast as we can, it does affect everyone. The person who is ill, is usually the only one who does want to keep it around - but that is part of the nature of the illness. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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kazi67
My two cents, stop the dancing!!

Our idiot GP let my d continue to dance whilst we refed her but I’m certain (hindsight)it would of been easier if she stopped dance at the time 
(as some here advised, but very hard when GP was saying it’s all good for her to continue)

then she had a major relapse lost all the weight plus more and she has now spent the most part of 2 years in and out of hospital and of course no longer danced in this time 

competitions can be very triggering and generally the dance environment we can now see isn’t the best place to be when trying to recover from an ED
the dance teacher constantly pushing to “work hard” “never give up” “quitters are loosers” “push through the pain”
i cringe now when I hear these messages and it’s not just in the dance industry either 

i can’t comment on FBT as we never had that
we now refuse to pay for any dance classes 
my d is older and now earns her own $$ so that makes things a little more difficult for us but whilst you have the “power” I wouldn’t pay
and whilst your d is behaving as she is its a perfect reason to take away the priveledge of dance 

my d had to loose everything including nearly her life to realise health comes first 

Hope this helps in some way 
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deetz
Thank you so much for your replies! I'm glad I have support regarding dance from everyone here! It makes it so much harder when the doctor says it's ok and will help her feel back to "normal". In answer to the one question, she's 16, still not driving yet, so it's not only money, but transportation and time that we are not giving as well.
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kazi67
It’s very upsetting that the GP’s “professionals”
don’t give us the right information isn’t it
you are fortunate your d is 16 and you still have time whilst she is dependent on you
its much harder for parents to have s say in anything (as in our case) once they turn 18 and this is the age when my d finally got the ED specialised help she needed

deetz you have the power to take away transportation, $$ dance, I urge you to do it whilst you can 
our GP didn’t even ask how much dance d was doing possibly different if it’s only 1-2 classes a week idk? 
But my d was dancing a lot more than that 

very disturbing information about the body muscle/fat composition mama bear 
I still ask myself the question why the hell don’t the GP’s know this and save our loved ones much pain and suffering??

its criminal IMO!
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ValentinaGermania
No competitive sports for an AN patient. Nada.
I also think that she might not be really WR if her behaviour is still the same.
What about fear food? Worked down already?
What about fat intake? At least 30% of calories?

It is mostly the same issue in all cases I saw here and in real life in the last 3 years. Kids are kept sick and go the chronical way because professionals keep them on a too low weight and let them continue having ED behaviour and fear food and ask us "to give them not too much fat as it is not healthy". Total bullsh*t.

RE dependence: FBT creates dependence as long as there is ED in the house. When they are in recovery and ED behaviour is slowly leaving they get their independence back. It is not FBT that keeps them dependent, it is ED.
When a patient is under supervision after a heart attack nobody would say "oh, he is not independent now, that is not good". Everybody would understand that a patient with a heart attack or cancer needs supervision and cannot be that independent as a healthy person. Same here. She has a life threatening disease.
Keep feeding. There is light at the end of the tunnel.
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