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

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Nicstar4
New here. Waves of being overwhelmed, between just doing what I need to do.
16 yr old, treatment since Jan, no changes in weight and behaviors worse. Last 3 weeks off the scale....
GP got cross as us today as dietician suggested blind weigh. To see if there would be any change and encourage gain. Since Jan, when weighs started no maintained gain. So had blind weigh after 3 week gap, then second weigh 2 weeks later, today, 2kg loss since began blind weighs.
He said he will not blind weigh as she needs to be aware. Wants her weighed weekly
I kind of get it, based on the outcome of the trial, but we were just trying to see if anything else would help in trying to maintain or gain. He does not really have a relationship with dietician and psychologist, but he has been our GP all my daughters life and she trusts him.
What are your views on blind/no blind weigh...
(Many more questions to follow in days to come!)
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Nicstar4
Thank you for your reply. To be honest, I think that the GP might be right this time in her case at the moment. I am losing my own judgement, trusting the professionals know best, having doubts about some of the management sometimes, too tired to think and juggle my other kids. Looking forward to the psychiatrist apt in 3 weeks so someone coordinates care. Also hoping to gain my own clearer judgement back soon! Feel that with FBT so much onus is on me to get it right.
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Warrior1
Hi we also blind weighed as my D had anxiety that she was gaining weight too fast. So for us it was better to begin with. Now she is WR and some,we open weigh as knowing her weight now doesn’t really affect her now she is more rational. As mimi has said the only thing that is going get your child to gain weight is having a positive energy balance in that she is eating a substantially larger amount of calories than what she is expending. Are you doing FBT? If you can give us a run down of what she eats in a normal day, what her activity level is like and what her level of resistance is like we can give you some ideas on how get your child gaining. Xx
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Foodsupport_AUS
Welcome to the forum. 

I notice that your first question is about blind or open weighing, but really the question should be why do you think you have not managed weight gain since January? This is a tough illness to manage and we all have to find our way through it. The fundamentals are the same but all the nuances are always different.

You will get numerous opinions both ways about blind and open weighing. We did both and I think at the time they were both correct for my D. Formal FBT uses open weighing on the theory that "fear of the weight" is something to be conquered. 
Others find that open weighing keeps on setting them back so far that keeping it away from them for a while seems to really help. It did in my D's case. 

So what can we do to help you get her weight up? Where do you think the loop holes are?
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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Nicstar4
Eating amount lower than average person, tbh think she restricts more than I know. but last 3 weeks level of resistance to eat meals is off the scale. Compares all intake to her identical twin. Refuses to eat until twin eats. She is 12-15kg lighter than her twin now. Melt downs if twin chooses to have different food or serves a small portion. Was an althlete, cut training back to 2 x week. No other exercise, but her twin reports ED twin sometimes runs on the spot, and tried to go For long walks when she feels that she has not moved enough.
FBT since March. Just had referral to out pt ED unit. On waitlist. Waiting for first psychiatrist apt in 3 weeks....
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Nicstar4
It was more today’s issue about the weigh, and the GP’s insistence. I also wonder why the weight is not going on. She is having 3 meals and snacks. (With lots of efforts and arguing at every meal...)Think I have to watch more than I do, I have to face up to the fact that she must be hiding or not eating all her food at school, because she should have gained on her current regime.
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Mamaroo
Hi and welcome from me as well.

My d was blind weighed 95% of the time. She was very anxious about her weight, so much so that when she was weighed, I didn't ask for the weight afterwards so that she would not pester me or try to read my reaction (I would call the next day and get her weight without her knowledge).

9 months post WR she weighed herself at family and was ok with it. In my opinion, being anxious about a number on a scale is irrational and if it interferes with weight gain, then it should be left for later when in all probability it would not then matter.

The bigger question is why your d is not gaining. When my d wasn't gaining (or rather not stopping losing weight) after discharge from ip, I had to go to school during recess and lunch ever day for 8 months to supervise her meals. That might be a good start for your d.

It might also be a good idea to seperate from her twin at meal times. It's very hard to eat so much more than someone else who is the same age. Can you eat first with the rest of the family and then supervise your d?

Is she being excluded from PE at school? We got a medical certificate stating no sport until notified otherwise. She had to sit elsewhere and was given something rrlse to do. I (with her teacher) manage to arrange her medical appointments around health class as well so that she would miss it.

Please ask more questions, you are not alone.

Sending lots of hugs 🤗🤗🤗🤗
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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Torie
As the others have said, it depends on the kid.  Blind weighing made things worse for my d as she imagined she had gained some incredible amount of weight each week/day/meal and absolutely could not stand not knowing.  They all are different.

I agree that it is important to weigh each week in any case.

I wonder if twin can eat before or after ED-d for both their sakes.  It must be very hard on non-ED d to be in this situation.

The trick is to find a path to weight restoration.  It will very likely be the hardest thing you ever do, but also worth it.  You need to find your way to a place where she eats what you serve every. single. time.  Ideally, what you serve will be enough for 1/2 to 1 kg weight gain per week (1 - 2 pounds).

I think it is good she is on the list for OP treatment.  Are you in the US?  If so, we can help make sure you are signed up with a good provider - many here (raises hand) have found that bad help is worse than no help at all.

Please feel free to ask all the questions you like.  We're glad you found us, although sorry you had the need. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Ronson
My d is blind weighed and it’s been so much better - she is no longer fixated with a number on a scale and it has made our progress a whole lot easier. But everyone is different so it’s what is best for you. We did find it reduces anxiety. She is now above the weight she didn’t want to be above. I don’t think she would have been able to get on with the refeeding without the blind weighs x
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scaredmom

Hi Nicstar4, 
I also welcome you here. You have been given great, great advice so far. The list that toothfairy has given you is really, really, helpful. 
FoodSupport_AUS hit a nail on the head here: "16 yr old, treatment since Jan, no changes in weight and behaviors worse." She has to gain no matter what. What can we do to help you get the calories in and more and more in ASAP? 

We did blind weighing and I think it really depends on the child and family, tbh. Torie's D needed to know to help her. My D never cared about the number. She would just ask if she gained or "did I do good, mom?" and no matter what, if the weight was up or down I just said that she was doing great. There is a post around ,I think toothfairy posted awhile ago ,about blind weighing and the professional suggested "no" to blind weights. I, personally feel that, blind weights may play a role at a certain point in treatment, and then to help them conquer their fear of weight, as FoodSupport says, then you can open weigh. I don't think it is as "black and white" as do one thing and not the other. You really could do both, depending on your situation and where you are in the journey. 

I really believe that the exercise and I mean all the exercise needs to stop. " Was an althlete, cut training back to 2 x week. No other exercise, but her twin reports ED twin sometimes runs on the spot, and tried to go For long walks when she feels that she has not moved enough. " I think what she is feeling here is ED, ED, ED! We had to stop all exercise and I mean all. MY D 11 at diagnosis, stood all the time. We had to stop that and now she says she "hates cardio". These kids are the greatest, hardest working athletes and academics ever, and that can be part of their ED. 
We can help with ideas to get her to stop exercise. I feel that the training has to stop too even twice per week. If she had cancer and sick she could not do exercise, let alone training while ill and in treatment.  I echo Mamaroo, in that she needs to stop PE too. 

toothfairy has a lot of videos and resources on exercise, "if it were cancer", etc... Please look them up they are a great way to start thinking about ED. YOu will need to parent so differently and it may be uncomfortable for you at the moment to consider that. But it has to happen to help her. 
You need to throw out all the rules you had as a parent. You need to be in control, not ED. I am blunt as until there was a paradigm shift in my thinking,I felt powerless. Once I "got it" then it became better for me, to do what i needed for my D. It was not easy at all. 
It is worth it, and it does really get better. It is really like climbing a mountain and taking switchbacks on a steep slope. It is so hard, gruelling physically and emotionally but when you get to the top- it is such a great feeling - and you can look back and truly  see what you have accomplished. 

I am sending all my support,
XXX

Food+more food+ time+ love+ good professional help+ ATDT+no exercise= healing---> recovery(---> Life without ED)

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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scaredmom
Just a question is your GP an ED specialist? 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Nicstar4
Totally overwhelmed with the support. Thank you everyone! The advice is awesome, most is what I am doing, but need to tighten it up. No doubt the message is clear re get weight up. I feel the treatment team has been less focused on this as she presents very well in therapy and dietician sessions. I think now all involved realize how entrenched it is.
I am taking strength from you all saying she can get better.
Her twin is naturally distancing herself at meals and I am encouraging that.
I am in sydney Australia, so resources are accessible.
Scaredmom- GP not eating specialist, think it is time to go past loyalty now, and move to speacialist GP!!
Thanks all again, together we can conquer ED. X
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Foodsupport_AUS
Thank you for letting us know where you are. Few GP's have any specialist knowledge of ED. 
Do you have access to either of these services http://www.theredleafpractice.com/ or Westmead Children's Hospital Eating disorder service. Both strongly support FBT and specialise in supporting the family to do what is needed.

I think you should assume no food is being eaten when you are not supervising. This illness in the short term takes away a lot of independence but your time is short - you have a 16 year old who is likely to be finishing school in the next two years and will potentially want to head off for study. There is no time to waste in throwing everything at her re-feeding. She will resist that is to be expected.
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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Nicstar4
We are going to red leaf practice on 3rd oct. on the waitlist at Westmead....
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Nicstar4
Toothfairy, just finished watching link. Thanks!
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HopeNZ
Hi Nicstar4

My d was blind weighed while in hospital but has been open weighed ever since. Like all our lovely kids, she experienced lots of anxiety about everything food- and weight-related, but for us this meant she knew her weight throughout refeeding and wr, and I feel it took the pain out of the number on the scale really early on. As you know, exposure therapy is a really well proven method of reducing phobias, and it certainly seemed to work well for my d.

There are no doubt pros and cons to whichever method you choose, and you know your d best. Good luck, let us know how it goes.

Hope x
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Foodsupport_AUS
Great that you are  heading off to Red Leaf. Assuming you are doing FBT there, it will classically be open weigh ins. Have you read these brochures produced by CEED in Victoria about how to get re-feeding started while you are waiting for care? http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartA_Nov_2017.pdf  and http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartB_Nov_2017..pdf
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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Kali
Hi Nicstar,

We have done both open and blind weighing over the course of the illness. In the beginning with the initial large weight restoration, my d. was weighed openly. Later we switched to blind weighing as it caused her less distress during a subsequent period where we did weight gain at home. Currently she is being open weighed again.

It isn't so much the form of weighing which matters, I think, but that if she is not gaining her intake needs to be increased. But hopefully you will get help doing that from the program you are going to take her to and the experienced caregivers on this forum.

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I have to face up to the fact that she must be hiding or not eating all her food at school, because she should have gained on her current regime.


Some families have found that going to school and having lunch with the ill child has helped with closing the loopholes and helping weight gain. Also stopping any exercise or sport as that will impact weight gain as well.

Welcome and ask any questions you may have!

Warmly,

Kali
Food=Love
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scaredmom
bump for Faddywrite.
XXX

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Mcmum
Hello all,
Just to put my tuppence worth in...
We switched to blind weighing about a month ago and my s is much more relaxed about weighings and much less fixated on a number he thinks he has to reach. He doesn't ask how much he weighs now and seems relieved not to know. He is just starting (very small steps) to understand that he will have to keep eating and growing to get through eventual puberty. He is thrilled to know his height however - we keep a tally on his bedroom door post and he is so proud of this moving line!
I too am just beginning to realise that there is no one size fits all and that the goal posts and the methods are constantly moving.
camhs seemed very resistant to blind weighing though - I felt I was asking for something quite extreme and edgy when I broached the subject!
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Ellesmum
Mcmum wrote:
Hello all,
Just to put my tuppence worth in...
We switched to blind weighing about a month ago and my s is much more relaxed about weighings and much less fixated on a number he thinks he has to reach. He doesn't ask how much he weighs now and seems relieved not to know. He is just starting (very small steps) to understand that he will have to keep eating and growing to get through eventual puberty. He is thrilled to know his height however - we keep a tally on his bedroom door post and he is so proud of this moving line!
I too am just beginning to realise that there is no one size fits all and that the goal posts and the methods are constantly moving.
camhs seemed very resistant to blind weighing though - I felt I was asking for something quite extreme and edgy when I broached the subject!



I’m about to be even more extreme and edgy, I’m going to tell all the team no weighing at all. I have no need for numbers as I can see her filling out and her mood improve daily. As an adult I never weigh myself ever, my clothes are my guide.

Unless d starts restricting again she won’t be weighed on my watch. I’ve read so much about low target weights being set, kids refusing to eat after weigh in that I’ve decided it’s not happening. CAMHs basically told me to refeeding at home, with no advice on how to do it. I’ve learned everything from books and this forum and the links our magical Toothfairy posts.

So I’ll add ‘no weigh’ (no way!,) to blind/not blind.
I need to know her BP is ok, her heart is OK etc but not her kg.
Ellesmum
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Ellesmum
For now I should add, I’ll rethink if things go awry over the next while
Ellesmum
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Mcmum
I can totally see the logic in this especially for an older child. As long as they don't hide away under super baggy clothes. You know your d better than anyone. Have chucked our household scales away for now as my s could sniff them out with magical ed super powers!
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