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

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Hope12_AUS
My 13 year old D has slipped back and we're refeeding again. This time it's so much harder as her 'mean girl' voice is back and more aggressive this time around. She is currently taking 5mg of zyprexa which is helping her sleep a little better however she is struggling very bad with the voices. If we serve anything that's a fear food or add in anything extra than the previous day she goes into such a state which is heart breaking. She is eating her meals no problem, its the extra that's so difficult. We have found ourselves having to restrain her as she try's to get away from us/saying we hate her and that she feels too full. It took 2.5 hours to get her to drink her milk with lunch and then tonight 45 mins to eat supper. She is very agitated, crying, screaming, kicking through out. It's like a monster has unleashed. After she eats and settles she feels guilty for what's just happened and apologises and says she didn't mean it. This didn't happen the first time around and the voices are relentless. I've told her we will need to go to the hospital and she tells me she will run away if she has to go back. Why is this time so much harder and why are the voices raging? The first time the voices were telling her I was going to die, now it's all food related. It just seems so much harder this time around.
Brooke
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Red
I'm sorry it's so hard this time but it sounds like you're really on top of things.  In this strange ed world, the behaviour you're seeing is all pretty normal and is generally predicated on anxiety; we generally see it subside if you stand strong and show them through your tolerance of their distress that the worst thing isn't going to happen.  Thus our children can learn to overcome this anxiety.  While it's happening, however, it's horrendous.  Could a different drug like olanzapine help, or having several items for distraction at the ready?
The future is not set; there is no fate but that which we make for ourselves.

"Not my daughter, you bitch." Mrs. Weasley
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mamabear
My D was very much like that during refeeding. It was brutal....I can relate.

This is all very normal and as Ed tries to get its claws in ever deeper and feels threatened things tend to escalate for a little while. It is testing your resolve. Your daughter needs you to stand your ground and make sure she eats what she needs right now, no matter how long it takes. I have sat at the table for three hours straight...., others for much much longer. You have to outlast the Ed. My daughter (13.5 now) tells me it was much easier for her to tell Ed to blame us...that she HAD to eat.

It will get easier with weight gain and time and consistent meals and snacks and monitoring.

My advice for the future is to not give independence back for a long while and when you do... Baby steps with a lot of safety nets in place. Also weekly weigh ins have been a godsend for us as we can catch losses before they are substantial. Are you giving her cal dense smoothies/shakes? You can get a ton into them with smaller volume.

You've got this. You can do this. Your D wants help..and come here to scream and cry.

We get it.
Persistent, consistent vigilance!
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waytogo
I relate to this. I thought we were over the worst, then she dropped 2kg and its back to the hell. This morning we had mayo, cream and milk spilled  allover the floor in a violent rage. Worst day in two months at least...

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Goingtobeatthis_AUS
Hi from another Aussie. Not much advice to give here as d has not slipped back yet (3 years since diagnosis) other than In the early days when we went up and down like a yoyo!
However I have found it really helpful kn the journey if this utterly irrational disease to really think of most of the stuff we see as brain wiring static/explosions and a symptom of the starved brain rather than trying to ponder the whys and wherefores. In the same way the symptoms of any other disease may change over time, maybe the voices this time have morphed but are still really just static on the brain which will go away with nutrition.
Also I don't know your journey but we took everything at snails pace and did not go to independent eating for a very long time- kept d at a good weight for a good long time before slowly releasing control. Much much slower than manualised fbt would have it- more than 12 months after WR. We did this because d got very very anxious with eating when not being told to and also needed many more calories than intuitive eating was going to cope with - but also to really let that brain heal.
Zyprexa is olanzipine from memory - d was on that and remains on fluoxetine which really redoced her anxiety and OCD type tendencies.
Hang in there - you sound like you know what you are doing!
Belinda Caldwell FEAST Executive Director. D 21 now well into recovery after developing AN in 2011. Inpatient 5 weeks, FBT and then just lots of time, love and vigilance.
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Foodsupport_AUS
Hope, sorry that your D seems to have slipped backwards. Unfortunately it doesn't seem to matter how often ED needs to be challenged, it can still be very strong. Even though it is such a struggle it sounds as though you are getting the food in, with a lot of hard work, and having to watch her distress on your part. My D too was on Zyprexa (olanzapine) for some time. She has since been changed to Seroquel (quetiapine) for similar reasons. This has probably been more helpful. 
I am sure you heard her threat to run away as ED talk. Clearly her thoughts are strong at the moment and she needs ongoing food to help her get to a better place. 
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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emilyshUK
Hope, You are doing a great job. What you are describing is horribly familiar, but if it helps, remember how dark it is before the dawn. Practice breathing and do everything you can to maintain that Ghandiesque composure whenever the ED beast rages. The most important thing is to get the food in and remain intolerant of compromises to full and sustained nutrition.
Hang in there. It does get easier,
Sue Shepherd
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Hope12_AUS
Thanks everyone for your kind word and support. It's been so hard this time around. The really bad melt downs over additional/different foods have been so emotional and exhausting but we've managed them by standing strong. Since taking zyprexa it's helping her sleep soundly, however once she is up, I can't get her to relax until she is asleep again. Some compulsive exercise had crept back in which we are managing by monitoring 24/7. I worry about going back to work at the end of January. D also has some other weird behaviours, for example she doesn't seem to have a filter when talking/making comments which are sometimes inappropriate. I've had to talk with her about this, and she is very defensive. It's like she hates everyone. My D is normally not like this at all. She also worries about how much we spend at the supermarket (most of the time I have to take her and H works 6 days with long hours). She worries about how much we spend everywhere we go. I am seeing her push some of her friends away, which is discouraging. She absolutely hates talking about ED and denies having it. She finds it hard to articulate her feelings and ends up in a heap on the floor crying and scratching her legs uncontrollably. She is eating no problem when it comes to her safe foods but when it comes to additional that's when this melt down happens. So very sad to see her like this but we're remaining strong. She is currently having 4000 and above calories which includes a morning smoothie with her breakfast. The negotiations are relentless. I hate ED. thanks everyone for your replies x x
Brooke
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Hollyhill_USA
Have you discussed perhaps adding some Zyprexa during the day with her doctor? My son, who also suffers with strong voices, takes it 3 times a day (morning, 3 pm and bedtime). Of course, time, love and lots of food are what helps all of this. My son did such similar things as you have described, and I thought this would be our forever. I am happy to say he is significantly better. Of course, I still see ED in these tiny ways only my husband and I would ever notice - and voices remain an issue. But he is happy and eating and living again. I know you can get through this part too. It is so hard and so heartbreaking, but it can be done!!! [smile]
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anotherbite_CAN
Happy New Year, Hope.  Relapse sucks.  We are just rounding the bend on one with our 13 year old.  Some things are harder the second time around for certain. They are older and express the distress in different ways.  

Your posts have described my girl over past 5 weeks:  My girl also hates talking about it and claims everything is fine and has alienated some friends and is struggling with fear food.  We also experienced much of the behaviour you described (hates everyone/ aggressive meltdowns/ huge food fears/ negotiating).  I can tell you that the extreme behaviour has waned as the pounds went back on.  She is almost back in target zone and we have compliance with respect to the food and some calmness and the return of some joy.  

It was exhausting (in a different way) this time around.  I was a bit behind this time around and there was a bit of lag time before I got fully back into Phase 1-refeeding groove.  I had gotten used to 'rational' daughter and found myself in the middle of ed negotiating at times without even realizing it.  Once I moved back to loving BRICK WALL refeeding mama (NO negotiating around meal times/ clear expectations around finishing everything/ LSUYE etc) things got much much better.  She needed tight, tight boundaries and I had to cut down completely on any/all negotiating.  I also pulled the girl back into my bed and this has helped tremendously.  Night time is hard (spinning anxiety) and sleeping with me allows her to feel close to me (after hating me for most of the day).  She won't admit that this helps but it clearly does (she cuddles and can talk a little bit about what she feels).  It also allows for some 'passive' reconnecting after I have been a task master all day. 

Stay strong you guys.   Sounds like you are doing so well.  The fog will lift....and, yes...relapse sucks!!!






D dx at 10 years old in June 2011. She is now 16 and happy and healthy.  We were IP for 8 weeks and then refed at home for what felt like forever.  We chased vertical growth for years...as is typical for the age.
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Iris_US
My d is older than your girls, so she had already gone through the major puberty growth spurt when her ED struck, but I remember being shocked that she gained 25-30 lbs between the ages of 12 and 15. I now know this to be normal. What I'm getting at is that your D's are right at the stage where MAJOR weight gain happens for adolescents, so any weight loss must be compounded and waken the ED monster big time. So much harder for you because you have to deal with both the need for WR and the need for big time natural weigh gain. Sending hugs and encouragement!
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Hope12_AUS
Hollyhill, my D is taking 5mg of zyprexa at night and it takes her less than 2 hours before she is really sleepy. I can't imagine giving it to her during the day if she is this sleepy, understanding though it will also be a lower dose. If you don't mind me asking, how much did you give your S during the day? What were the benefits you saw? The doctor did say it will allow her deal with the voices a little easier. During the day she is on the go constantly. Another bite thank you for your advice also, you've given me some great ideas. My D is always so kind hearted and happy, it's tough seeing the ed not letting her have fun and making her dislike everyone. I hope your D is doing well also.
Brooke
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Hollyhill_USA
If I remember correctly, he started at 1.25 mg in the morning and then 1.25 at 3:00 pm and 2.5 at bedtime. He takes a higher dose at each time these days. In the beginning (and when they first increased his dose) it did make him sleepy. But it doesn't anymore. He gets up super early for school and functions quite normally all day [smile]. His night dosage does seem to knock him out quickly - but during the worst of the illness, he had difficulty sleeping, so the meds making him go to sleep quickly and stay asleep were a very good thing for him. [smile]

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