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AUSSIEedfamily

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Reply with quote  #51 
Dear wheresmywand,

State Not Weight is also what a lot of really good clinicians/professionals also use. The New Plates Podcast with Dr Rebecka Peebles one of the F.E.A.S.T clinical advisory panel members, gives a great discussion from a professional clinicians perspective.

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doris

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Reply with quote  #52 
Urghhh, the battle has started. Over the last few days I've been mentioning to H that we will probably need to go above the CAMHS target range to see true and long lasting recovery and he has taken that on board. Yesterday we received a copy of an update letter our therapist had sent to GP confirming in black and white that target range is 25th-50th centile 57.8-62.7kg. She had an individual session with the therapist a couple of days ago and weight was 59.4kg. Between them they decided to drop afternoon snack so we are now on 3 meals and supper and an extra snack on dance day, the idea behind this I'm told is to demonstrate that D can control her weight and is not just going to keep putting weight on. After tea yesterday D and I were chatting and she mentioned that maybe her body needs to be 12stone (the weight she was before this all started and the weight she is terrified of going back to) I said "maybe it does"..cue ED eruption. Took a couple of hours to talk her down (including locking herself in bathroom and vomiting-something she's not done before (lock now removed)) She is now stuck between either "Mum, who I trusted, just wants to make me fat again" OR "The therapist, who I trusted, is lying to me".   She did calm down eventually and eat supper.  

Going to call therapist on Monday to discuss, any other evidence you guys have to hand that I can put to therapist and help me with this would be massively appreciated. In the meantime we will "just keep swimming" xx

tina72

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Reply with quote  #53 
Hi doris,
so sorry that it is more difficult at the moment, I hope it will be better soon.
I do not really understand what you write, maybe it is my bad english. The therapist says to GP she needs to be 57,8-62,7? That is a range of 5 kg!!!
HE decides to drop afternoon snack with her without speaking with you before that??? Dropping the afternoon snack means that she has now no food between lunch and supper which is a way too long time and that can be very triggering.
Is he talking to her about target weight? Is she weighed blind?
Your d seem to know better than the "professionals" that she needs to gain more to feel free. She is afraid of that, but that is normal.
If you stop now and cut the afternoon snack she will be down below 57,8 in 2 weeks or so. Is that the goal?
A target range between 25 and 50 is a too big range. When she was on 50, she should go back on 50 and not below that.

How is her behaviour? State, not weight. If there is no AN behaviour left, you can stop.
The vomitting is a very severe symptom that it is too early to give her freedom back. You do not want to change AN in BN.
Tell the therapist that YOU decide to cut out snacks when YOU think it is the right time. Tell him she needs to be on higher percentile and get the GP into the boat. Tell him that she has vomitted.

I can get so angry when I hear what these so-called "professionals" destroy in a couple of minutes...
I forgot to say great that hubby is on board. Best information in your post!
Tina72

Foodsupport_AUS

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Reply with quote  #54 
I can imagine your frustration. Great that your husband is on board, that is a part of the battle. 

I think the important thing is to challenge the therapist - why set a target range of less than the 50th centile? If D was bigger than average before it makes no sense to try to squeeze her body into less than average and hope that she is going to recover. 
I also think the very concept of her "controlling her weight" is one that is bound to lead to further issues. In full recovery she eats without thinking about her weight. She eats because she enjoys it, because she needs fuel and not to control her weight. 

Unfortunately there is little research on target weight that support being above the 50th centile. Most papers unfortunately talk about BMI of 19 -20 rather than looking at normal ranges. 



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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  #55 
Hi Doris, our gp also told my d she could drop supper at the beginning of the year. That didn't last long as her anxiety increased and her sleep suffered. So I introduced supper again gradually, letting her choose and guiding her. So she would pick a fruit the first couple of days. Then I asked her to add something with protein until she was having a proper supper again. This illness doesn't go away at a certain magical weight. I wish the 'experts' could understand this.
Best off luck, Doris, you got this!

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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 months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
scaredmom

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Reply with quote  #56 
Doris,
So sorry this has happened! I hate it when these professionals who are NOT living in our homes decide to make big decisions like that!! 
This makes me upset. I wonder if you print this thread off and show them (without D knowing) what they would think; That all these people from around the world, who have lived this in techincolour 3D , are supporting you to feed her more!!! A thousand voices with real life experience cannot be wrong!

Tell them to watch all the videos here on "state not weight" then to come back to you and tell you the weight ranges. Sorry I am just livid at this.

You know what to do- I stand with you. You got this. I am pleased that your H is on board. 
Big hugs.
Torie

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Reply with quote  #57 
It is kinda weird that the good folks here (who had never met my d, and hadn't even seen a photo) were the only ones who were correct about how much weight my d needed.  Everyone else's opinion was at least 5 kg too low.

So glad you are seeing less resistance, but please remember that it might increase again.  My d was adamantly against that last 5 kg ... the ones that brought her back to health.  I should say that ED was adamantly against them - now that my d is back, she seems fine with her weight.  Well, sadly, young ladies never seem pleased with their weight, but she is back to normal on her self-image I think.    xx

-Torie

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EC_Mom

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Reply with quote  #58 
Doris, this really stinks. I'd drop this therapist and this GP, but I guess you don't have choices.

What you can say, and what I said as I ignored various bits of bad advice from practitioners in favor of the GOOD advice here, was "These people are MY consultants. They give their advice, but I have the final say. I have more specialized advice that I follow."
tina72

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Reply with quote  #59 
Hi mamaroo,
"our gp also told my d she could drop supper at the beginning of the year"
No words. Can you show me one normal eating person (not dieting) who would drop supper?
Great that you could turn that around.

No matter who gives you that "advice" and how "professional" they seem, DO NOT STOP REFEEDING until you see real change in behaviour.
If you once stop you will need double power for restart.
Tina72
wheresmywand

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Reply with quote  #60 
Hi Doris,

That SUCKS!!

I wondered if any of those links I mentioned from tooth fairy about 4-5 pages back would be helpful to print out for T - there is one there from kartini about the dangers of setting target weights too low. If they aren't going to listen to you they may get the picture when you hand them some printed information from experts that could help support your case. It does sound like deep down your daughter knows what she needs but can't be seen by ED to be countenancing that.
GGRRR makes me [mad]

Swim on Dory x

PS Thanks AEDF dad, I have watched that now.

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17 yr old daughter dx RAN Jan 16, but starting restricting some months before that. Let go too early and now back home gaining weight again, slowly challenging fear foods and entrenched 'healthy, pure' eating habits and behaviours.
doris

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Reply with quote  #61 
So things are progressing well! I tried to speak to the therapist and we played telephone tag for a couple of days by which time D was doing so well that I decided to leave it be. In the last two and a half weeks her state of mind has improved so so much and she has made so many little steps forward that for the time being I'm going with state not weight. We had another therapy session last Friday and I brought up the issue of the target weight possibly being too low and in a roundabout way we kind of all agreed to see how things went, if within this range the state of mind stops improving and her periods don't come back then we will push for more weight, D is coming round to this idea too.

She is now getting cross with the anorexia for taking so much away from her and just wants to be back to normal, she has the idea that she wants to go to a music festival for the day/evening late August and we've said she can so long as by then she is comfortable preparing food by herself, eating by herself and with friends and eating the sorts of foods that might be available / her friends are eating. Between us we have come up with lots of steps along the way to challenge her. She is now helping plan and prepare meals with minimal / no anxiety. She has written a list of 20 fear foods and we have an "unlucky" dip to pick one at random for her each week between now and the festival. First out of the pot was McDonalds!!! She ate chicken nuggets and chips with us in a busy restaurant last weekend. She didn't enjoy the food but she ate it within a reasonable timeframe..I am in awe of her!!! She has started to notice she feels hungry occasionally, depending how long this is before she is due a meal we sometimes have an extra snack. She has eaten with extended family and has suggested this weekend that we have family friends over for supper as she feels she can eat in front of them (the first time we have done this for 8 or 9 months at least). She has started playing loud music again in her room and in the car...this is most definitely a behaviour that ED stopped her doing!!!

Thank you all so much for your support, there is no way we would be where we are without the help and advice on here. I know we still have a long way to go but with lots more baby steps we will get there! X
sk8r31

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Reply with quote  #62 
Really great to hear this update, and all best wishes for continued steps forward!

Cool idea about the 'dip jar' for fear foods!  Great to hear that your d is managing to be more social & getting back to typical teen behaviour.

Sounds like you have good plans in place moving forward, and can tweak as needed.

Warmly,
sk8r31

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scaredmom

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Reply with quote  #63 

doris,

This is wonderful! I am so happy for you all. I love the McD meal! My D said at 4 or 5 years old she would NEVER go to McD's only "unhealthy people would eat there" and I did not know and wish I had known that was the clue to take her to McD's- maybe could have prevented ED?? She has NOT been since then! Then diagnosed with AN at 12!!! 
Oh well, she is WR and doing great and even mentioned to me that "we should try McD's this weekend"! This made my day. So to hear that your D did that is literally AMAZING!!! 

Thanks for posting this! You are doing great! 
Time+food+ love= Healing!
 

 

deenl

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Reply with quote  #64 
Well done to you, your daughter and your family.

What great ideas and great progress.

You rock!

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.
tina72

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Reply with quote  #65 
Hi doris,
so great to hear from you, thank you for that update! It helps so much to hear these stories of hope and progress.
To all that are stuck in the dark days: Keep on swimming!

You rock, doris!
[wave]
Tina72
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Reply with quote  #66 
Fabulous to hear your update. It is those little steps forward that make us realise that change really is happening. 
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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.
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