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

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mrh74
Hello,

I was wondering if anyone has had experience of their ED loved one no longer being weighed once they have been WR for a while and are able to eat more or less "normally" again?

My daughter (14) has been WR for about 5 months and the ED thoughts seem to be disappearing gradually (we have found it to be so true what everyone says about weight restoration being the key.  They appear every once in a while and the CAMHS team have told us that we will need to be vigilant for at least 2 years to prevent relapse, but they want to stop weighing her soon, on the basis that most teenagers her age in the UK aren't weighed regularly and they want her to be free of the reliance on numbers etc.

I can see their rationale for this but I am nervous in case she loses weight in the future and we don't notice!  She still looks slight to me but I know that she's a healthy weight because they take her weight and height every month so it stops me from worrying.  Having said that, I wouldn't want to start weighing her at home once she's discharged because it was a disaster when we were asked to do that when she was waiting for treatment!

Has anyone managed without weighing and not driven themselves mad with worrying about weight loss?  Any ideas for how I manage it?

Thank you xx


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smileymum
Hi there
Congratulations on getting your d W/R and well on the path to recovery - that's no easy task and I'm so pleased you have go your d to this position.


I'm guessing there are no absolute right or wrongs but I'm certainly going to be weighing my d every month, especially in early recovery. She is W/R 4 months (but there are still many ED cognitions and fear foods.) Since I can't tell by looking, weighing will give me peace of mind. We know ED is crafty and so it will also close down any future loopholes/backsliding in recovery.  In addition, activity levels may change/body may change etc and so weighing will help us adjust as necessary.

When she's more recovered and independently eating, if she asks why she still needs weighing, I'll tell her that it's great she is recovered, and part of safeguarding that and future-proofing that is regular weighing. 

Just my opinion for what it's worth. I am sure others will be along here to offer their insights.

Smileymum
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deenl
Hi,

I weigh all my kids now in a casual way. Usually between every 4 - 8 weeks as needed. I always just say that it might not be normal for all teens but not all teens have the genes for such a serious illness in their gene pool.

Often relapses happen with unintentional weight stagnation or loss through a new sport or growth spurts for example.

I am fairly sure oldest son would not have the genes bur I do not want ED sneaking back in with ED son or that younger son develops it. It is such a serious illness with such a long recovery time that I err on the side of caution.

Have you checked out the Kartini Clinic blog. Lots of great perspective from a world leader in EDs in kids and teens.

Warm wishes

D
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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tina72
We went from weekly to monthly and now quaterly (16 months after WR). I think it might be twice a year next year (my d is grown out and adult) but I would not dare to not do any weighing any more. It can go backwards too fast.


"Having said that, I wouldn't want to start weighing her at home"
I would never do that again, too, we have not even a scale in the house any more, but you can get her weighed at the doctors and she will need to go for blood and heart check for a long time so you can kill to flies with that.


Tina72
Keep feeding. There is light at the end of the tunnel.
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mrh74
Thank you so much everyone for your responses. It sounds as though you’re all on the same page as me with this one.

You’ve given me some great ideas and responses too. I hadn’t thought about weighing my non-Ed son but I might try that too. When my daughter became ill she was 11 so I still washed her hair etc and could see weight loss. It’s much more difficult with teens isn’t it?

It sounds as though people mainly weigh at home if you’re not seeing anyone regularly. I’m finding it difficult having just gone down to monthly weigh ins but we’re managing, and I like the idea of doing it every couple of months eventually. If Camhs think she’ll obsess over it guess I could blind weigh her? I’ll raise my concerns with them when I next see them.

Thank you again everyone, lots of ideas and suggestions xx
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Ronson
Camhs blind weigh my d so she doesn’t obsess - I see it like Tina’s diabetic analogy - if insulin levels were fine you would still have checks. Honestly with my d I think it means she can say to Ed I have to eat or they will know when I’m weighed - when weighing stopped she couldn’t do that anymore.

I would like my other d to be weighed but we have now removed all scales from house.

R
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HopeNZ
Hi Mrh74

Almost a year after wr my d is still weighed every three weeks at the clinic.  As we do the FBT stage 2 dance of handing more independence around food back to my d, knowing her weight is an invaluable tool which she uses to judge her progress with making good choices.

I'm one of the few people on here in favour of open weighing all the way through from the early stages of refeeding (post hospital stay, where it was blind) and into wr.  For us, the exposure therapy aspect of it worked really well for my d.  It meant that, early on, the sinister mystery of what the scales said was put to rest, and now the numbers on the scale are just that - numbers on the scale which give her excellent - and objective - feedback on how well she's doing with her food choices.  We don't have a scale at home any more, but I suspect weighing herself (with me peering over her shoulder!) will be a tool she can use as she moves towards recovery.
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Foodsupport_AUS
There have been a few in the past who have stopped weighing completely and gone on State not weight. I remember CharlotteUK was one such person. My D is rarely weighed. Our scales at home don't work. My D is a young adult and does see her GP every month or two for review where she is weighed but I don't see or know the results - it is what she chooses to share with me.  

It does make me watch her behaviour more closely.
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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Torie
I had to stop weighing my d for a time.  In general, I don't recommend it.  If you might be going this route, I suggest working to develop an eye for her weight.  What worked for me was taking careful note of how she fit in a few key outfits.  If you are good at eyeballing her weight, that makes it a lot safer to forego the scale and also provides some insurance against tricking the scale in the meantime.  Please keep us posted. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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harmonymom
If I could do it all over again, I would have only done blind weigh ins. My daughter was weighed weekly at the GP and the dietician. Their scales were different so she never weighed the same. It was ridiculous. Once she got WR, I weighed her at home on a weekly basis BUT as she gained more, I stopped. It really created too much drama. I threw out the home scale and when she does see her GP, she is blind weighed. I really think blind weighing is the only way to go. 
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Mamaroo
Hi

I don't weigh her anymore, but now and again am reconsidering it. When we just started refeeding, we caught her weighing herself on our scale so we took the batteries out of the scale and hid the scale. During treatment she was blind weighed at the hospital, but it was a challenge, she was very good at seeing her weight and then it just resulted in a meltdown. So the dr had her step backwards onto the scale, while she was holding a sheet over the display and I held a paper under her chin to prevent her from peeking down. If I had to weigh her at home it would have to be open and I have to find the scale again, so I'm not too keen. I do measure both my daughters' height every couple of months and otherwise use the 'state not weight' method. (Also ensuring she has a regular period).
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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Mcmum
Maybe it depends on the age of the child??? If very young with lots of growing to do and puberty to get through it would be easy for them to slip and us not notice until it's too late. Baggy clothes don't help either. I think we'll be weighing for many years still but I can see how for some it might be counter productive. We don't have scales at home anymore though so I'd have to find a really good hiding place for new ones when we finish with camhs...
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kangamum
Funny to read this question just after coming home from doctor who we now see monthly, and next year will go to quarterly. We discussed weighings and have decided not to do it anymore. D is just so so well, so obviously bursting with health and vitality and good mental state we both feel it is no longer needed. 15 kgs up at last weigh in a month ago, BMI 22 which really does seem to be a magic number for recovery when held for a few months.

Having said that, I can tell at a glance how she is traveling weight-wise, as another said through a couple of key outfits and her face. Her boobs are getting bigger, and she is thrilled about that! I cannot see a time in the future when I do not watch her like a hawk, but I can be so quiet about it now. 

It is a completely individual choice, always follow your gut feeling IMHO.

Good luck to you.
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mrh74
Thank you all so much for more really helpful replies.

I'm not very good at seeing weight loss mainly because she's at 97% weight for height now (BMI 19) but is a completely different shape to before diagnosis (when she was 94%) and actually looks thinner now than before, probably because she's gone through puberty and her body shape has matured.  For a girl, loss of periods would be a good indicator, but if they reach that point, is that too late?

I will raise my concerns with them later today (my husband and I have an appointment on our own with the therapist and nurse).  If she's not weighed in the future I'm worried that she will try to measure herself using another inaccurate, way, which will cause distress - she told me that she can't remember a time when she didn't try to work out if she was "fatter" - even when she was 6 she used to worry if her school dress felt tighter.  I was devastated to hear this because I had no clue until she was at least 9 [frown]

I hope you all have a good day xx
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Kjb3782
I weigh daily here. This is done strictly. No exceptions. ED is not going to have a voice around here any more. As y'all know ED sneaks in so fast. I'd also suggest to all to weigh others in the household as a safety measure.
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Foodsupport_AUS
Welcome Kjb3782. Daily weighing is a bit of a concern too. It does not take into account the normal variations in weight which occur. Inpatient units don't tend to weigh daily for that reason, most do two to three times weekly whilst others just once a week. 
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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tina72
Kjb3782 wrote:
I weigh daily here. This is done strictly. No exceptions. ED is not going to have a voice around here any more. As y'all know ED sneaks in so fast. I'd also suggest to all to weigh others in the household as a safety measure.


Here ED started to take over with doing daily weighings. It is really not necessary and gives too much information. The normal weight range of a body (after WR) through the month (and through periods) is +/- 1-2 kg.
Keep feeding. There is light at the end of the tunnel.
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mamabear
We stopped weighing my D gradually over a long period of time. I’m talking 3 -4 plus years of time. Until ED behaviors were totally gone and she was completely able to eat on her own and eat freely ( normally- eat what she wanted when she wanted) and maintain and gain on her own, weighing was absolutely necessary.

My d got sick at ten. Fed through 9.5 inches,full puberty, over doubling of body weight. In the beginning she was weighed every few days... then weekly for a couple years... then biweekly, then monthly... until we stopped when she was about 14.5-15. It felt wrong and weird to weigh her when she was in a really solid recovery. She said it made her “ feel like something was wrong” and I get that bc it’s not normal. I don’t want her weighing herself. I have not weighed myself in 7 years. She’s away at college now at 18.5. She’s doing great. Friends and family take her out and report back to me. She’s living a full and normal life.

Keep feeding. ❤️
Persistent, consistent vigilance!
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Mcmum
Mama bear, that's so reassuring. Having a son so young , it's good to know that we can eventually get through this. Did you experience many relapses through puberty. My 9 year old is much better but has a million ed behaviour's still and would happily starve if I let him. I know we're in this for the long haul but it's good to hear from people on the other side. Good plan for weighing as we move forward. Thanks for posting x
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mamabear
There is a big difference between a “ relapse” and “ feedback not failure”.

If my daughter got ill again now- I would consider that a relapse. She has been eating on her own and gaining weight over the past 4 years plus on her own like a normal teenager. She has eaten freely without rules etc.
So my answer is no- she never had a “ relapse” but there were many times we had to change tactics, readjust, step up observation, etc etc. It was a long haul. A war with a million battles. We lost some... but we won more.

Just never ever back off. A 9 year old has MANY YEARS of growing ahead and from my experience now not only with my kid, but talking with hundreds of others- ED kids really cant feed themselves enough to tackle growth/puberty. Even when doing “ well”, with even a small loss or growth without gain ( which is a LOSS), ED behaviors come back in a second. Just stay vigilant and consistent. Don’t allow ED behaviors to take root. Tackle every single one. Tackle every single fear good. Leave no cracks. Eat with your child at school if at all possible. We ate with my d the majority of 2.5 school YEARS.

Read the Stages and Tinelines thread.

Recovery is there... and it is beautiful.

Normalize eating and repeat... a million times over.
Persistent, consistent vigilance!
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Mcmum
Thanks. I spent yesterday reading back through most of your posts as your d was a similar age to our s at the start of your journey. Extremely helpful. We have a lot of growing to do as you say but equally, he's in our home and with us for a long time. He has almost two years of primary school left and is watched through snack and lunch. That won't change. It's a small school and they are really supportive but thereafter, you're right, that vigilance has to remain. At home, we know we have to be on it. Every day for as many years as it takes.
The difference between now and the early days is that I feel confident that have I looked this thing in the eye and essentially know what we're dealing with.
Many thanks again - enjoy your lovely daughter as she becomes an adult x
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tina72
"The difference between now and the early days is that I feel confident that have I looked this thing in the eye and essentially know what we're dealing with."

That is the secret of FBT and why it works so well. You know what to do and you can act immidiately again if needed. You know what you are dealing with and how to get out again.

Tina72
Keep feeding. There is light at the end of the tunnel.
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