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loumw

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Reply with quote  #1 
Hi, I'm new here, my 15 year old D has just been diagnosed with AN restricting type and we are in treatment with our local CAMHS ED Team using FBT.

My D has a real fear of being weighed, not just knowing the weight, but anyone knowing. She never weighed herself before treatment and now thinks it has made her worse and focus more on not gaining weight and has actually lost weight since treatment began. Has anyone else experienced this? Is it just more ED behaviours coming out now that it is being challenged? Any advice appreciated, she keeps telling me she would be more compliant with eating if she wasn't getting weighed
sk8r31

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Reply with quote  #2 
Hi loumw, & welcome to ATDT!  Hope you will find the peer support useful and encouraging.

Many ED kids have a fear of being weighed; how one tackles this issue can be dependent on your individual situation and the stage your d is at.

Sometimes it's best to begin with 'blind weights' where the person is weighed backward on the scale, & is given only minimal info.  Weighing is an important medical piece, as it's a concrete indication of how the refeeding process is going.

We never had a scale in the house before ED, and did all weights at medical appts until quite far along in the ED journey.  At the point where our d was weight restored, we opted to do weekly weigh ins at home first thing in the morning in pjs, varying the day so d did not necessarily expect or worry about the weigh in.  This cut down on med appts, and it desensitized d to the weigh in process.  I would not say much about the weights, just acknowledging if things were going fine, or whether a slight correction was needed.

But as I say, there is much individual variation in how one manages weigh ins.  I'm sure others will be along soon to offer their thoughts and experiences.

Hang in there!

Warmly,
sk8r31

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loumw

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Reply with quote  #3 
Hi sk8r31, thanks for your reply.

She has a really high level of anxiety over it, but I think She is using it to get us to pull her out of treatment, as in 'see I am a lot worse since being weighed, it's not helping ' kind of way. Doesn't help that I have already had a bit of a wobble over it.

Just feeling really scared and worried right now and can't see how things are ever going to improve.

Really need guidance and support, looks like I have come to the right place

Loumw
mjkz

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Reply with quote  #4 
My daughter did the same thing.  She was petrified of getting weighed and could not stand for anyone to know her weight.  If she knew the number, she would have panic attacks about it and having someone else know the number was just as bad.  It is just something they have to get used to because you cannot realistically not weigh your daughter when she is struggling with anorexia.  My daughter did learn how to deal with the anxiety but it was hard going for awhile.  We ended up weighing her at the doctors and not telling her what she weighed.  She got used to it.  Don't let her use it as a reason for you to pull her out of treatment because I can guarantee she will find something else if you do pull her from treatment.  It is just one of those hurdles she has to get over.  [frown]

Kali

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Reply with quote  #5 
Hi Loumw,

Can you ask her team to blind weigh her since it is causing her distress?

There was a period of time when my d. did not want anyone to know what she weighed. I think it was really because she wanted to be free to lose weight without anyone knowing about it. The way we handled it was with her being blind weighed and not knowing her weight every two weeks or so when she was on an upward trajectory, but once a week if she was at a low weight. It was not an option to not be weighed. Then I would phone privately later on and discuss it with the provider so I would be able to figure out how much to feed her that week and where we were with refeeding. The provider would just smile and say thanks to d. after the blind weigh in and she did it at the end of the session, not the beginning. I know that is not how FBT says to do it but it worked better for my d. like that.

We needed to get a gauge on how d. was progressing and I also needed the info to make a weekly menu which would help her gain what she needed to.  

I agree with Mjkz that it is a part of treatment and also an important tool for you and her team to be able to see how she is doing also from a safety perspective. Of course, once your d. is fully weight restored and has been for some time, she will not need to be weighed as often. 

best wishes,

Kali



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Foodsupport_AUS

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Reply with quote  #6 
Welcome to the forum.

It is definitely a thing, worse for some than others, but my D also had terrible emotional distress about weighing and could be worse after weighing. This article from UCSD also talks about it http://eatingdisorders.ucsd.edu/resources/blog/blog-research-1.html

If think anotherbite's D had terrible issues with weighing to well beyond weight restoration and there was complete refusal to get on the scales. In the end she did re-feed a second time without weighing, so it can be done. 

As for your D loumw initially I would suggest acknowledging her distress : I am sorry that you find this so distressing but it needs to be done - then not getting into the rest of the ED back chatter that comes with it. Keep on feeding. 

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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.
Mamaroo

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Reply with quote  #7 
Hi Loumw, sorry you had to find here on this forum. My d was the same. She would hound me the whole time to tell her what she weighed. No matter what she weighed, it would always be too much. The way we handled it, was to blind weigh her (backwards with a sheet in front of the display) and I would not be told her weight. In that way she knew she could not nag me. Afterwards I would call our care coordinator who would share her weight with me and I would add calories accordingly. 

I caught my d weighing herself at home at the beginning of treatment, so we took the batteries out of the scale and hid it. I'm so relieved not to see that thing in the bathroom anymore, so it won't be coming out until we are travelling overseas and I need to weigh the suitcases.

Her anxiety will go up with treatment. ED is being used as a way of decreasing her anxiety. Taking ED away, takes away her coping mechanism. Try to give her other ways to cope (not exercising), such as CBT or hitting a punch bag. My d did very well on over the counter anti-anxiety meds, but maybe your team would prescribe some for her. As she gets use to eating again her anxiety will go down until the weight goes up, expect a spike then. Unfortunately the weight goes first to the face and tummy before it redistributes to the arms and legs. Telling your d that the 'fat' around her tummy will redistributes won't bring comfort, unfortunately. Just do as I did, tell her she is not fat, over and over until she hears your voice in her head. After redistribution, anxiety will go down again until she is about 10lb (5kg) from her target weight (remember this weight is moving along with age and height - for months despite gaining weight my d was always 10kg underweight), then you get the extinction burst, another anxiety spike. There are more information about is here: https://www.aroundthedinnertable.org/post/some-rather-long-musings-on-extinction-burst-relapse-and-recovery-6462360?pid=1278998614#gsc.tab=0

Best wishes. 

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. Challenging fear foods and behaviours now.
loumw

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Reply with quote  #8 
D is now refusing to go to any appointments, can't see how we can get any further forward without her engaging with the team. Any advice?

Loumw
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Reply with quote  #9 
You are not the first person that this has happened to. The good part is that your D's ED feels threatened. 

One of the tenets of treatment with FBT is that the person with the illness does not have to agree to treatment. Just like food is not negotiable when re-feeding, going to appointments is also not negotiable. 

Options include using two adults to firmly insist on going to the appointments. 
Considering the use of police or ambulance. 

If you don't have the resources at home to require her to go, then first of all I would talk to CAMHS to see if the have any suggestions. 

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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.
deenl

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Reply with quote  #10 
Hi louw,

My son tried that too but medical oversight was essential as he was dangerously underweight. He refused to go one morning and I was lucky that the pediatrician could squeeze us in that afternoon. I told him that and also that medical care was not negotiable. If he missed the afternoon appt I would make two for the next day and the next and so on. I told him I would not stop the pressure. But if he went he would not have to think about it for a week. I think he heard the absolute determination in my voice. With great fear and difficulty he went that afternoon. He was never comfortable going to the doc but it was never so difficult after that.

We did insist on blind weighing as still 18 months later he doesn't know his weight.

At his sickest we frog marched him into hospital one parent each side and him screaming away. He had a complete melt down but his vitals were dodgy so it had to be done.

Do whatever you need and tweak whatever needs to be tweaked to get her there.

Warm wishes
D

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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Mamaroo

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Reply with quote  #11 
Hi Loumw, like the others said completely normal. We took our d literally kicking and screaming to the hospital. The days she had her appointments were very bad for her. She would follow the mealplan the whole week, but come her day of the appointment she would restrict.

She doesn't need to engage with the team. For months my d just sat there and insulted her therapists (so brace yourself, for that too is very common). But as she got better, the insults lessened and she started to engage with them.

Remember they don't know they are ill, so going to see a dr or therapist feels pointless to them, but they need to go and go often.

Sending you best wishes and loads of hugs 🤗🤗🤗🤗

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. Challenging fear foods and behaviours now.
BattyMatty_UK

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Reply with quote  #12 
Hi loumw, Reading all of these replies and also between the lines, I agree that it's probably because 'the ED feels threatened'. My son was quite happy to go along to weekly treatment sessions but I believe that was because, back then, eight years ago, our local CAMHS were still using outdated treatment models that actually seemed to encourage the ED to thrive, so my son's ED didn't feel threatened!

He hated being weighed, too. But it was really because he was petrified that he might have put on weight. If he had then the entire CAMHS session would be hijacked by him going crazy and afterwards 'the ED' would punish me all the way back home. If he'd lost weight, then the CAMHS session would run smoothly.

If I were to do it all over again (God forbid!!!!! [mad]) I would insist that he was weighed 'blind'.

As far as refusing to go along to appointments, I like the suggestion from Deenl above: "If he missed the afternoon appt I would make two for the next day and the next and so on. I told him I would not stop the pressure."

Do let us know how you get on, won't you?
SaveSave

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Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
LauraCollins_US

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Reply with quote  #13 
Anxiety is to be expected, and it is natural for you to want to make her feel less anxious, but unfortunately that probably isn't possible and is also probably not a good idea for you to make your decisions based on her anxiety. It's easy for us as parents to get "organized around" these mental illness symptoms and then we become part of the problem. Weighing is just a medical measurement. If it causes anxiety because of mental illness then it is the illness, not the weighing that is the problem, right? And our role as parents is, and it is HARD, not to let it be OUR anxiety. It's just a weight. It doesn't matter any more than shoe size or color of hair. By being calm and unflappable in the face of that anxiety we can model a safety in that knowledge. We can be brave just as we were when our kids were scared of thunder or an injection. 

This brain disorder takes normal and benign things, like weight or appearance, and makes them MONSTROUS and IMPORTANT. They are not. And we have a parental superpower in staying in the reality while our kids are temporarily not there. It's incredibly powerful, and it gets easier as you go, I promise!!

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tina72

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Reply with quote  #14 
Hi loumw,
as the others said weighing is necessary because you must see if you are on the right path and there is a progress. Thats not discussable. Also the appointments. You have to get through this and when she except this and sees that you are fighting ED no matter what it may afford, it will get better. She will try to break out a lot of time. But every time you stand together as a wall against ED it will get better. You are not fighting your d, you are fighting ED.
You might try to get it easier for her if you try blind-weighing. FBT normally wants the patient to know his weight but many here did this blind-weighing. If she is anxieous about you knowing the weight, you could try to ask the nurse just to make a thumb up or down so you and your d will only know if its more or less but no numbers. You could phone up the nurse later without your d to get to know the correct number.
Like Laura said, to be anxious about weighing is not normal and an ED behaviour. Healthy people get on scales and weigh themself and its ok. Thats the target.
Keep on going, you are doing the right thing. The beginning is quite hard but it will get better with every pound she gaines.
Tina72
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