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

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Hendrixt
Hi everybody,

Following 4 months intense refeeding 14yrs old D has just entered the lower portion of her healthy weight. Vastly improved mood and reduction in ED behaviour. We’re continuing with the calorie intake and also focusing on fear foods and gaining a few extra pounds in weight as a buffer and to bring about further improvement in brain healing. 

D is weighed every week by CAHMS (UK) and is finding that knowledge of the weight gain extremely stressful. Yesterday she refused to attend a CAHMS appointment unless we agreed to go permanently on blind weighing. 

Does anybody have any views on the pros and cons of blind weighing?

Anybody aware of any views on this from the professionals community?

UK members - can I expect push back from CAHMS if we wish to do blind weighing (FBT method requires patients to know their weight) ?

Thanks in anticipation for any views/advice.
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Foodsupport_AUS
It sounds like you and your D are doing really well. To be honest if she is requesting blind weighing then I would go with that. There are definite pros and cons to both sides of the blind/open weigh debate. The main reason for open weights is that it is meant to help them see weight as no big deal, just another number. There is no doubt this can get in the way of eating though. Since she seems to be doing very well otherwise, there does not seem to be a real reason at this stage for her know here weight. If it helps her get to the place she needs to get to then I would be all for it. 

It is definitely a part of FBT for open weights - part of the protocol. I know of no evidence which actually says one is better than the other - a search on Google scholar can't find one. So although it may be a part of FBT you could make a case that if open weight is making it harder for her then it is reasonable to blind weigh. 

FYI we did both blind and open weights at various parts of treatment. I think the blind weight does make it easier for managing the weight gain, even though their thoughts at times make them think they have gained enormously. 
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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CED123
We had to really push our camhs for blind weighing and they only agreed because D agreed.  So if you D is keen that should be in your favour.  It may also help to know that the Maudsley manual says this about blind weighing:

Some patients express a fear of seeing their weight each week. If this is the case it is essential that this is explored and linked to underlying issues e.g. anticipatory anxiety. In the early stages of weight restoration, it may be helpful for the young person not to see their weight but the therapist needs to be clear that this is a temporary arrangement. Later in treatment the therapist will need to address the links between knowing their weight and relearning about appetite, hunger, natural fluctuations, effects of more physical activity on weight gain/loss etc. If the young person shows no concerns about knowing their weight each week, this should be acknowledged and discussed in terms of how they will let their parent or their clinician know if knowing is becoming harder for them or less helpful.

so although it talks about temporary and early in treatment, the manual is not completely anti blind weighing.
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Ronson
Hi 

We have used blind weights for a while as d became very hung up on fixed body weight percentages.  It has taken pressure off us all.  D still does not want to know her weight and we are fairly comfortable with the whole process. I personally have some reservations that d has not met her demons head on but I don’t think we could have got through some of the refeeding without blind weighs.

We are UK with camhs - our fbt therapist strongly against it - one of the nurses very supportive.  At the end of the day you need to do what is best for your family - no one size fits all.  If I have learnt one thing through this process it is to be an advocate for my daughter and be assertive and be sure of my opinion and ready to fight my corner.  It’s your family, your care, you are the ones dealing with the backlash etc. 

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Caz
My d found knowing her weight stressful too but when we told CAEDs this they refused blind weighing. This meant that she never was able to put on weight permanently there. The weight chart shows a zigzag line week after week as the anxiety at gaining weight meant she'd lose it again the following week.

It was proved that it was an issue with d seeing her weight as she was blind weighed every week at the IP unit where she eventually ended up for 3 months. She gained weight EVERY week, EXCEPT for the 2 weeks when she found out her weight and became extremely anxious again. Then her weight drops until they went back to blind weighing.

However the anorexic behaviour (fear foods, hiding food etc) still continued until she started taking an anti-depressant. That seemed to take away the anxiety around weight.

Btw when I checked the records later CAEDs had put d was attention seeking to get more care from them, rather than anxiety about seeing her weight. They decided that this was an EUPD trait. I've since heard it's common when clinicians fail to then blame the patient so be careful about this.
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scaredmom

Everyone has their own experiences to draw from and can be very passionate about blind or not blind weighing. It really is YOUR decision. Whatever you choose you will need to work out if there are issues either way. The main thing is the gaining.. whether she sees it or not. If she does not want to see the weight, that is ok and I would take the cue from her. It does not matter whether she  does not see it now and you tackle it later when she is exposed to it anyway ,sometime, tbh. The other co-morbids like anxiety are not always related to ED and seeing their weights, they can be another issue we need to deal with specifically and you will figure that out in time too. 
Whatever YOU decide I support you. 
Good job, Hendrixt, and so good to hear from you about the great progress you have made!

 

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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Caz
Totally agree, you've both done so well already in only 4 months, Hendrixt. What worked for us may not work for others, it has to be right for your family.
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HopeNZ
We're one of the few families who have used open weighing all the way through, and would recommend it.

As soon as my d was discharged from hospital, where they did blind weighing, our FBT therapist switched to open weighing.  It was extremely stressful for my d at first, but to be honest, absolutely everything was anxiety-provoking during that time.  We persevered, and pretty soon the principles of exposure therapy became evident and the weight really did become 'just a number on a scale'.

Something to bear in mind is that, while blind weighing may work best for your d and your family at this early stage, it's possible that it may not serve you so well later on.  For us at least, our d knowing her weight has been central to her being able to start taking responsibility for her own food choices.  We've had a pretty rocky road through FBT stage 2, but thankfully my d has known her weight, known what it needs to be, and that it needs to keep moving up, and it's increasingly her responsibility to keep herself/ get herself there (with the usual vigilance and guidance from us).  Her weight is a good, objective feedback tool for us all but especially her.

So perhaps file this away for future reference and be prepared to deal with the knowing-her-weight issue further down the track 🙂.  
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Ellesmum
Blind here, CAMHs don’t like it but they don’t have to live with my daughter or deal with the stress.  I have no idea what I weigh, most kids don’t know their weight and I hope before long d just won’t care what she weighs. 
Ellesmum
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Kali
Hi Hendrixt,

We did both blind and open weighing at different times during the refeeding process.
At first, d. was open weighed while being weight restored at residential.
Afterwards, when she came home we went to blind weighing for about 9 months. Then she had a new team and they did open weighing.
While she was being blind weighed, I would phone once or twice a month and ask the nutritionist to let me know what her weight was and I did not mention that I was doing that to my daughter. The reasoning being that I needed to make sure that she was eating enough to gain and maintain her weight and could only know that if I had a number.

So if it reduces your daughter's stress to not know the number, but you can speak with her team behind the scenes to make sure that she is gaining and maintaining, perhaps that is a fine way to proceed for the time being.

warmly,

Kali
Food=Love
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tina72
We first did open weighings because hospital introduced it that way and it was a fight for every single kg. We then changed to blind weighing (it took me 4 months to fight that through) and that was a game changer here. No stress with weighings, no problems with weight gain any more, she did not even ask for her weight for nearly 2 years now...I would never do anything else again.
Keep feeding. There is light at the end of the tunnel.
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Hendrixt
Sorry everybody - I posted this then got a few things happened over the weekend and didn't have time to check replies. I've just been able to read through them all and I'm really grateful for all your advice. Event though people have different views on this, it's been very helpful to hear your views as it provides pointers to issues that I need to consider. I've also done a bit of reading about the pros and cons.

I never even realised why open weighing is done but I have now read that it is just another form of exposure therapy, so that they can get used to their weight and the theory is that when they are fully recovered the issue of the number on the the scales should not carry so much fear for them - so I suppose it takes the emotion out of weight and would probably help in relapse prevention. However, if you're going through the nightmare pf re-feeding and fear of weight again is getting in the way I can fully understand why people would do blind weighing.

Also I think, to get any benefit from open weighing there has to be thereputic support in helping your D to understand things like how weight fluctuates, avoiding interpreting a single weight reading and staying within a healthy range etc and I can see no evidence that this is being done with my D. If she continues to suffer intense stress from knowing her weight and I am given no evidence of the thereputic value of this, for example if she [and us as parents] are left to deal with the aftermath of a weight reading with no guidance or support, then blind weighing will become more of an option. On the contrary, our therapist has said that we need to prove to our D that she can eat the various foods [including lots of fear foods] without putting weight on. This, I do not agree with and will ensure this message is not given to my D. I would rather help her to learn that she can eat the foods, including fear foods that we are giving her and that she may well put weight on, but that this is nothing to be scared of, and that being scared of her weight is one of the elements of her illness which needs to be challenged. However, if open weighing threatens the good progress we have made in terms of weight gain then we will have to think very carefully about doing it blind.

Thanks again to all for taking the time to send me advice. What a wonderful place this forum is to be!!




 
tina72 wrote:
We first did open weighings because hospital introduced it that way and it was a fight for every single kg. We then changed to blind weighing (it took me 4 months to fight that through) and that was a game changer here. No stress with weighings, no problems with weight gain any more, she did not even ask for her weight for nearly 2 years now...I would never do anything else again.
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Hendrixt
tina72 wrote:
We first did open weighings because hospital introduced it that way and it was a fight for every single kg. We then changed to blind weighing (it took me 4 months to fight that through) and that was a game changer here. No stress with weighings, no problems with weight gain any more, she did not even ask for her weight for nearly 2 years now...I would never do anything else again.


Thanks Tina - it must have been a massive relief when you changed to blind weighing
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Hendrixt
Kali wrote:
Hi Hendrixt,



So if it reduces your daughter's stress to not know the number, but you can speak with her team behind the scenes to make sure that she is gaining and maintaining, perhaps that is a fine way to proceed for the time being.

warmly,

Kali


Thanks Kali - yes we would be able to obtain our D's weight from the therapist if we went to blind weighing 
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Hendrixt
Ellesmum wrote:
Blind here, CAMHs don’t like it but they don’t have to live with my daughter or deal with the stress.  I have no idea what I weigh, most kids don’t know their weight and I hope before long d just won’t care what she weighs. 


Yes Ellesmum - we've had a few differences with CAHMS and wont hesitate to challenge them when needed 
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Hendrixt
HopeNZ wrote:
We're one of the few families who have used open weighing all the way through, and would recommend it.
We've had a pretty rocky road through FBT stage 2, but thankfully my d has known her weight, known what it needs to be, and that it needs to keep moving up, and it's increasingly her responsibility to keep herself/ get herself there (with the usual vigilance and guidance from us).  Her weight is a good, objective feedback tool for us all but especially her.

So perhaps file this away for future reference and be prepared to deal with the knowing-her-weight issue further down the track ðŸ™‚.  


Hi Hope - this is really interesting. You say that your D knew what her weight needed to be that it needed to keep moving up and that it increased her responsibility to get better - can you tell me how making her aware of these goals was achieved. We've no idea what thereputic interventions are undertaken to achieve these benifits - just that she is being told what her weight is

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Hendrixt
scaredmom wrote:

Whatever YOU decide I support you. 
Good job, Hendrixt, and so good to hear from you about the great progress you have made!

Awe thanks Scaredmom - certainly if she is adamant she does not want to know her weight we will have to carefully consider blind weighing 

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Hendrixt
Caz wrote:
Totally agree, you've both done so well already in only 4 months, Hendrixt. What worked for us may not work for others, it has to be right for your family.


Thanks Caz - that's terrible what they wrote on your record - you must have been furious
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Hendrixt
CED123 wrote:
We had to really push our camhs for blind weighing and they only agreed because D agreed.  So if you D is keen that should be in your favour.  It may also help to know that the Maudsley manual says this about blind weighing:

Some patients express a fear of seeing their weight each week. If this is the case it is essential that this is explored and linked to underlying issues e.g. anticipatory anxiety. In the early stages of weight restoration, it may be helpful for the young person not to see their weight but the therapist needs to be clear that this is a temporary arrangement. Later in treatment the therapist will need to address the links between knowing their weight and relearning about appetite, hunger, natural fluctuations, effects of more physical activity on weight gain/loss etc. If the young person shows no concerns about knowing their weight each week, this should be acknowledged and discussed in terms of how they will let their parent or their clinician know if knowing is becoming harder for them or less helpful.

so although it talks about temporary and early in treatment, the manual is not completely anti blind weighing.


Thanks CED - that's really useful information from the manual and I will be quoting that if we decide to go for blind weighing. Hope you're coping - I've been following you posts - must be really hard
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Hendrixt
It sounds like you and your D are doing really well. To be honest if she is requesting blind weighing then I would go with that. There are definite pros and cons to both sides of the blind/open weigh debate. The main reason for open weights is that it is meant to help them see weight as no big deal, just another number. There is no doubt this can get in the way of eating though. Since she seems to be doing very well otherwise, there does not seem to be a real reason at this stage for her know here weight. If it helps her get to the place she needs to get to then I would be all for it. 

It is definitely a part of FBT for open weights - part of the protocol. I know of no evidence which actually says one is better than the other - a search on Google scholar can't find one. So although it may be a part of FBT you could make a case that if open weight is making it harder for her then it is reasonable to blind weigh. 

FYI we did both blind and open weights at various parts of treatment. I think the blind weight does make it easier for managing the weight gain, even though their thoughts at times make them think they have gained enormously. 


Thanks foodsupport for searching google for me - We're probably going to see how long we can go with open weighing but if blind is what is needed that is what will happen and I think, as you say, you can make a case for it under FBT
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tina72
We never had a scale in the house before AN moved in and my d never knew her weight from 1-16 and we also do not know our weight. So this is/was normal for us and I do not understand why therapists think that people need to know their weight. So many people in the world are poor and live in huts and I am sure they have no scale in their huts...
If my pants get tight I know I have gained and if they fit again I know I have lost. Thats it.

I think it is much more important that they learn what normal portions are and what they need to eat every day to maintain their weight (or gain if needed) but really not that number on the scale is important...
Keep feeding. There is light at the end of the tunnel.
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Hendrixt
tina72 wrote:
We never had a scale in the house before AN moved in and my d never knew her weight from 1-16 and we also do not know our weight. So this is/was normal for us and I do not understand why therapists think that people need to know their weight. So many people in the world are poor and live in huts and I am sure they have no scale in their huts...
If my pants get tight I know I have gained and if they fit again I know I have lost. Thats it.

I think it is much more important that they learn what normal portions are and what they need to eat every day to maintain their weight (or gain if needed) but really not that number on the scale is important...


agree absolutely Tina. Its just that CAHMS have weighed her and told her her weight right from the beginning and she’s never been interested in her weight until just recently when she’s come closer to w/r
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HopeNZ
Hi Hendrixt

Your response above hits the 'exposure therapy' aspect of open weighing on the button!  Yes, for us it has meant that, as our journey towards our d's recovery has involved all sorts of other challenges, the number on the scale has, at least, not been one of them.  Unfortunately with wr we did not, as so many people here seem to have experienced, 'got our d back'.  With wr we got full-on raging puberty and a mightily empowered, challenging teenager!  While her weight and state are great (awful rhyme!) the big problem that remains is her reluctance to engage in reflection.  Despite our best efforts for it not to be so, our d seems to carry a lot of negative emotion relating to her illness which she is not yet ready/does not yet have the maturity to address.  She got ill at 13, and is now 16.  As she progresses slowly towards Stage 3 it has been very useful to have unemotional, objective ways of measuring progress.  

Just to clarify, knowing her weight did not increase her responsibility to get better;  but as she has started to take more responsibility for getting better and staying better, knowing her weight helps to show her how she's doing.  My d is hypermetabolic and still needs truly overwhelming (to me) piles of food to keep her weight on, so simply gauging how well her clothes fit would not cut it for her.  When she and I have disagreed that what she has eaten has been sufficient, the next weigh-in has helped to clarify this.

I can only tell you what worked for us.  There is no right or wrong way to do this.  I'd also just suggest that even though your d is asking you to commit to permanent blind weighing at this stage, that may well change in the future.  So you'll have other chances to explore this very issue, I'm sure.

Warmly
Hope

(By the way, thank you so much for replying to each of un individually.  It's a lovely way to respond 😁)
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CED123
glad to be helpful @Hendrixt .  thanks for your thoughts - one day at a time here. fewer outbursts currently which is nice, but more guilt for not doing enough to be causing outbursts! am hoping for another good week this week weight wise but the trouble with blind weighing (we only say up/down/neutral) is that there will be huge angst when/if she does know her weight. but cross that bridge when we hit it.  we did hit it recently at the dexa scan in july and seem to have got past that, so hopefully we can again.
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Hendrixt
HopeNZ wrote:
Hi Hendrixt

Your response above hits the 'exposure therapy' aspect of open weighing on the button!  Yes, for us it has meant that, as our journey towards our d's recovery has involved all sorts of other challenges, the number on the scale has, at least, not been one of them.  Unfortunately with wr we did not, as so many people here seem to have experienced, 'got our d back'.  With wr we got full-on raging puberty and a mightily empowered, challenging teenager!  While her weight and state are great (awful rhyme!) the big problem that remains is her reluctance to engage in reflection.  Despite our best efforts for it not to be so, our d seems to carry a lot of negative emotion relating to her illness which she is not yet ready/does not yet have the maturity to address.  She got ill at 13, and is now 16.  As she progresses slowly towards Stage 3 it has been very useful to have unemotional, objective ways of measuring progress.  

Just to clarify, knowing her weight did not increase her responsibility to get better;  but as she has started to take more responsibility for getting better and staying better, knowing her weight helps to show her how she's doing.  My d is hypermetabolic and still needs truly overwhelming (to me) piles of food to keep her weight on, so simply gauging how well her clothes fit would not cut it for her.  When she and I have disagreed that what she has eaten has been sufficient, the next weigh-in has helped to clarify this.

I can only tell you what worked for us.  There is no right or wrong way to do this.  I'd also just suggest that even though your d is asking you to commit to permanent blind weighing at this stage, that may well change in the future.  So you'll have other chances to explore this very issue, I'm sure.

Warmly
Hope

(By the way, thank you so much for replying to each of un individually.  It's a lovely way to respond ðŸ˜)


Hi Hope, It must have been a hard pill to swalow when your D didnt return to normal on W/R. Ours has improved massively in her mood but ED is definately lurking and it is very difficult to have any meaningful conversation about her illness. She also has what you refer to as a lot of negative emotion - it's very easy to disturb her mood. Fear foods can quite easily bring out the beast so there's a lot of work to do with her. I can see how her being aware of weight changes has been helpful for you D's progress. I think I am leaning towards trying to maintain open weighing but if it threatens her current progress we may have to consider blind weighing, of only on a temporary basis.

On her last visit to the therapist she refused to leave the house unless we promised that she would not be told what her weight was so, on balance, on that occasion we went along with it. The therapist agreed for that session but said we would have to discuss future weighing. I'm aware that open weighing is 
CAHMS policy but I will be wanting to know what is said to her at each weighing as I believe there will be little therapeutic value if there is no intervention from the therapist to help her cope with the stress of weight gains

Wishing you well xx





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