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

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WorriedMum68
I am feeling very low and scared at the moment, and am unsure how to proceed. My 15yr old daughter was diagnosed with AN in August after 10 months of increasingly restrictive eating, during which time I tried to get her treatment from various places. She has been with Camhs since August, and has put on a bit of weight, but not as much as we hoped (around 3kg). She hates going to Camhs, and her behaviour around appointment time is becoming increasingly erratic. She went missing before her latest appointment, causing huge panic on my part, and so managed to miss the appointment. She is still attending school, which is where she seems happiest, but not on a full time basis. She eats well, though we haven’t managed to stamp out some food hiding/disposal, but it is not enough for sustained and fairly quick weight gain. Her main fears are the introduction of the foods she fears, her anxiety is enormous around this issue, and the weekly Camhs appointment. She is resistant to taking medication, though we are trying to persuade her to try fluoxetine. My health is suffering, I have almost constant pains in my chest, and I feel totally run down. My husband is better at dealing with her, but cannot be around all the time. I really don’t know what to do for the best. Anyone’s ideas would be really appreciated.

Thanks

WM68
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ValentinaGermania
Do you join her at cahms appointments? Do you know what is going on there that increases her anxiety to such a high level? Is it the weighing?
Did you already introduce fear food or can you think about having a "deal" with her to wait for that until WR? Or at least to wait for some weeks to calm her down a bit? We had a fear food list and it was clear to my d that there was only one fear food introduced every week on fear food day (mostly sunday) and she had a say about what is easier for her and what we should leave till the end of that list. It was clear for her that ALL fear food was worked down but it was also clear that we will not do it all at once.
How much did she gain each week?
Can you have someone around (family, friends) to help you? To take some little time off and do something nice for yourself?
Sorry, so many questions...
Tina72
Keep feeding. There is light at the end of the tunnel.
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Torie
Oh dang, it is so very hard to establish a good clip of weight gain.  It is great that you have managed to get some weight on her, so lots of gold stars for that.

I wonder if it is possible to have CAMHS come to you.  I seem to remember that someone here was able to arrange that, although I
think that is unusual. I like Tina's idea of trying to figure out a way to make CAMHS less scary, although it is very common for them to freak out on appointment day (and after).  I remember one terrible day when I just had the feeling my d would disappear instead of coming home after school to go to her psych appointment.  I went to the school before school ended and hung out by her locker to make sure she came home.  The school  personnel told me I wasn't allowed to be in the hallway and that I needed to wait in the office ... yeah, right!  I hid out in a nearby bathroom feeling like some kind of low-grade criminal or fugitive and when the bell rang I rushed to meet my d.  I realize that has nothing to do with your situation, but I thought it might provide a sense of camaraderie to know that we really do feel your pain. 

I also wonder if CAMHS would be willing to prescribe olanzapine instead of flouxetine.  I think the research is much more promising for that, and also, olanzapine takes effect right away so you can tell if it is helping or not.

Love this idea of Mimi's: "One day I told her some cases are so serious that they are actually medically required to drink milkshakes. This planted a seed in her head and the next day she asked if her case was serious enough for that. Seeing a door open I told her yes. She asked when she will start. I told her today."

Please keep us posted.  Keep up the good work! xx

-Torie

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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debra18
Hi. Yes it is very hard and frustrating. We all can understand. I agree to hold off on fear foods and focus on weight gain. Is it easier for your daughter to know in advance what she will have to eat? That helped my daughter. Also she only started gaining consistently when she had two high calorie drinks a day. Sometimes I had trouble finding heavy cream and even a few days of having whole milk instead of heavy cream stopped her weight gain. Are they able to supervise your daughter in school? My daughter went to school and was supervised. That was how I managed through the refeeding process.
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WorriedMum68
Thank you all so much for your replies. I don’t think in 50 years I have ever felt as bad as I do today, but your replies have helped me gain a little optimism, and I’m so grateful. I think that holding off the fear foods is a good idea, judging by her current mental state she clearly has a long way to go until she is WR, and weight gain should be the priority. She has agreed to really try not to hide food, so maybe if she knows fear foods are not on the menu she will comply with that. She is completely resistant to an evening snack, it seems to be one of her ‘rules’, but we are intending to up her other snack volume soon.
I don’t know why she is so terrified of Camhs, but she does hate the weigh in and says they are patronising (they aren’t, they are very nice people). I do think that she secretly hoped to be better now, even though she says she doesn’t want to be, and doesn’t have much faith. We have just had an interesting written conversation, she won’t talk to me but we took it in turn writing and it was like having my daughter back. Does anyone else have experience of that?

WM68
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deenl
Hi worriedmum,

What I needed at your stage was information. I found lots of it on here but I needed and overall picture to help me develop a full plan (and to work with the professionals to adjust their plan to suit our circumstances) and I the books I found most hep[ful were

Anorexia and other Eating Disorders. How to help your child eat well and be well by Eva Musby. This is a very detailed book by a mother. It gave me the confidence to take on ED and the knowlegde to figure ou how. She has a great website here.
 
Decoding Anorexia by Carrie Arnold. Carrie is a scientific researcher and had anorexia nervosa for  10 years. This is a bit more sciency but totally readable and very helpful for understanding the biology of what is happening.

There is a new book out from a well known ED therapist that is not as detailed as Eva's book (good if you aren't into reading or just want the main points) but tells you exactly what to do. When Your Teen has an Eating Disorder: Practical Strategies to Help Your Teen Recover from Anorexia, Bulimia and Binge Eatingby Lauren Muhlhelm.

I found gaining knowledge and figuring out practical steps I could take helpful in easing the confusion and panic I felt.

Wishing you continued strength and courage,

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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deenl
Our posts crossed.

My son was petrified of the ED doctor. It's like a phobia and all we can do is insist they go buthelp them as much as possible. We made no progress until we did blind weighing. Is that an option?

We too did conversations via email and occasssionally notes.

It's amazing how so much of what kids with ED do is similar.

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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ValentinaGermania
"I don’t know why she is so terrified of Camhs, but she does hate the weigh in and says they are patronising"
Weighing was horrible for my d until we insisted in blind weighing. She does not know her weight for a year now and I wish I would have done that earlier. No discussion about weight gain now any more...[wink] FBT wants to do open weighings but I think for most patients that is something for stage 3 or later.

"We have just had an interesting written conversation, she won’t talk to me but we took it in turn writing and it was like having my daughter back. Does anyone else have experience of that?"
I thought about it and I can say that I was never called bad words or names in a written conversation. Maybe that is your d who you write to and ED is an illiterate [biggrin]. Use that. Tell her you love her and send her nice notes. ED will hate that [wink].

" I do think that she secretly hoped to be better now, even though she says she doesn’t want to be, and doesn’t have much faith."
Try to show her that YOU have faith and hope. You are her mirror. If she sees that you believe in recovery she will dare to do that, too. Fake it until you make it.

"One day I told her some cases are so serious that they are actually medically required to drink milkshakes. This planted a seed in her head and the next day she asked if her case was serious enough for that. Seeing a door open I told her yes. She asked when she will start. I told her today. That was the day that set her on her path to recovery."
mimi321, I really LOVE that. She send that signal and you got it. Great! That is the right way through that tunnel...

Tina72


Keep feeding. There is light at the end of the tunnel.
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WorriedMum68
Hi Tina

Thanks for your suggestions, I especially like the blind weighing one though I think she will need a bit of persuasion. We have had further written conversations this evening, and she has told me more tonight about how she feels than in the last 6 months combined, hopefully we can put that information to good use. I think I read on one post of yours that you delayed the introduction of fear foods for a while too, was that the case? I hope that your daughter is enjoying being at university, your story is one that gives me a great deal of hope.

Best wishes

WM68
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WorriedMum68
Thanks Ronson, good to know my daughter is not the only one who hates going! Her anxiety levels go so high around Camhs appointments that I’m now dreading them too. She is so resistant to everything we try, but it’s half term soon so shall have a good go then.
Olanzapine has also been mentioned, I think, but we focussed on fluoxetine as the possible side effects are fewer, not much point if it requires WR though. If you only see Camhs for weigh ins I take it you just managed by yourselves at home? Were they supportive of you dropping the therapy side of their treatment?
I am very pleased with the note writing we have started today, seems like I have a link with her that wasn’t there earlier.

WM68
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Kali
Dear Worriedmum,

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My health is suffering, I have almost constant pains in my chest, and I feel totally run down. 


Please take care of yourself. Can you make an appointment with your doctor? Chest pains should be evaluated by a professional. Some parents have also found that anti anxiety medication was helpful during the worst of times.

This illness takes a terrible toll on us caregivers. Please try and find something that you can do to relax yourself and be kind to yourself. Even if it is just a bubble bath or a good book or a walk in a beautiful place. Is there anyone who can step in and help?

As they say, pull down your oxygen mask first. 

warmly, 

Kali
Food=Love
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debra18
I also write my daughter notes. She writes about things she doesn't feel comfortable telling me. I write her back telling her I love her and praise her for different things not related to eating or weight gain.
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WorriedMum68
Thanks for the replies Debra18 and Ronson

Kali, yes I shall see a doctor as soon as I can. Have also thought of some sort of medication, didn’t want to go down that route but my stance on that is now softening. Have also developed eczema, so not feeling great.....

WM68
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Ellesmum
WorriedMum68 wrote:
Thanks for the replies Debra18 and Ronson

Kali, yes I shall see a doctor as soon as I can. Have also thought of some sort of medication, didn’t want to go down that route but my stance on that is now softening. Have also developed eczema, so not feeling great.....

WM68


Yes I’ve accepted I could do with some help too, the stress does catch up with us, it’s inevitable really.
Ellesmum
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ValentinaGermania
WorriedMum68 wrote:
Hi Tina

Thanks for your suggestions, I especially like the blind weighing one though I think she will need a bit of persuasion. We have had further written conversations this evening, and she has told me more tonight about how she feels than in the last 6 months combined, hopefully we can put that information to good use. I think I read on one post of yours that you delayed the introduction of fear foods for a while too, was that the case? I hope that your daughter is enjoying being at university, your story is one that gives me a great deal of hope.

Best wishes

WM68


It took me 6 months to get her to allow me doing blind weighing because she did not trust me at first. I then asked her to do it for 1 months just to try it and if she would gain too much (whatever "too much" was, we never discussed that) or if she does not like it at all we could go back to open weighings. This month was a big change here. She was very stressed the first time because she thought she cannot stand NOT to look at the scale. I had read "Brave girl eating" before and asked her to go backwards on the scale so the urge to look at it would be easier. She did it and since than we never changed it and she is not at all stressed about the weighings any more now.
But I would not do it at home. We do not have a scale any more in our house and I think I will never get a new one again. The risk that she would get on the scale in an unsupervised moment is too big.

The great thing about blind weighing is that you can easily go over the target weight if your d has been told one (which I hate also and would recomment the team NOT to do). Most parents had to refeed to a much higher level than the professionals thought. In our case her comfort weight zone is just 1-2 kg above target weight but it was impossible to get there without blind weighing.

We did wait for WR to start introducing fear food. In fact we started it about 90% weight restoration because she wanted to do her driving licence and we used that as incentive to start to work down the fear food list. The younger the kids are the earlier I would start with reintroducing fear food but there is not ONE RIGHT WAY. You need to try. But it is important to do it. The goal is to have them eat all they ate before AN moved in.

Try to get some stress out for yourself. Meet a friend. Have a bath. Have a nap if possible.

Tina72
Keep feeding. There is light at the end of the tunnel.
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WorriedMum68
Thanks, Tina, I shall keep pushing the blind weighing until she agrees. It is useful to see how long it took you to get your daughter to agree, we have been feeling despondent about the progress we have made but I think our expectations of a quicker recovery were unrealistic. I noted on a post of yours some time ago you mentioned Benecalorie. How did you get on with that? What were the best things you found to add it to? Don’t really want to have to use it, but it’s hard getting enough calories in....

WM68
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Ellesmum
Ronson wrote:
Hi

We got camhs to just tell d she wouldn’t see her weight from now on as she was too focussed on it. Coming from a professional she just accepted this - it has been so much better for us. She also thinks I don’t know which helps with the questioning - I’ve said to her they will only let me know if things are going in the right direction. This is not strictly true but has helped us.

We use canola oil rather than benecalorie - food all cooked in it and it added to curries, pasta and garlic bread etc - I aim for 400 cals this way



R


This is my plan, we have our first meeting after her assessment today and I’m clear about blind weighing, if they diagree I won’t allow them to weigh as it will cause stress which I’ll have to deal with.

I assume benecalorie is like complan? If so I add it to any powdery foods such as oats or sachets of drinks. It would mix well with flour too if you bake. It can be stirred into warm sauces. Lots of uses and a god send.
Ellesmum
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Ellesmum
Thanks Ronson, I will do that. Thanks to this fabulous forum I am strong enough to not be swayed on this.
Ellesmum
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ValentinaGermania
Ellesmum, I would also speak to them WITHOUT your d first and ask them to do blind weighing. If they disagree ask them to do it at least for 1 month and see wether it has a good impact on her behaviour.
Ronson, I think most professionals do not agree with blind weighing because it is not in their books - FBT standards are with open weighing - but I hope Prof. Le Grange and his staff will rethink that and maybe have both possibilities in their books for future. I thought about writing him about our positiv effects with blind weighing. Would you join me with that?
Tina72
Keep feeding. There is light at the end of the tunnel.
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Ellesmum
tina72 wrote:
Ellesmum, I would also speak to them WITHOUT your d first and ask them to do blind weighing. If they disagree ask them to do it at least for 1 month and see wether it has a good impakt on her behaviour.
Ronson, I think most professionals do not agree with blind weighing because it is not in their books - FBT standards are with open weighing - but I hope Prof. Le Grange and his staff will rethink that and maybe have both possibilities in their books for future. I thought about writing him about our positiv effects with blind weighing. Would you join me with that?
Tina72


If they disagree I won’t allow them to weigh. I know this girl so well and I know it will cause issues. In many ways I don’t care about the number, I can see positive mental changes already and I trust the body more than the medics to find it’s ideal. I’m only concerned if she loses weight at this stage.
Ellesmum
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ValentinaGermania
WorriedMum68 wrote:
Thanks, Tina, I shall keep pushing the blind weighing until she agrees. It is useful to see how long it took you to get your daughter to agree, we have been feeling despondent about the progress we have made but I think our expectations of a quicker recovery were unrealistic. I noted on a post of yours some time ago you mentioned Benecalorie. How did you get on with that? What were the best things you found to add it to? Don’t really want to have to use it, but it’s hard getting enough calories in....
WM68



In fact I would say it took me too long to push for blind weighing and I should have done that much earlier and it was just because I was afraid of her reaction.

Benecalorie: I needed that at one point to make her gain on her portion and not all of us so I needed something to add easily and secretly only to her portion. I added it mostly to lunch (which is the biggest meal here) and there to sauces, rice, white soups (califlower soup or mushroom soup). It is really great stuff. I do not need it any more now but have some cups left for emergency cases.

Rapeseed oil is much cheaper to add but seperates more in sauces and soups than Benecalorie. Rapeseed oil was great for smoothies and to fry EVERYTHING that was fryable.

Tina72
Keep feeding. There is light at the end of the tunnel.
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ValentinaGermania
Ronson,
You can find the email adress of Prof. Daniel Le Grange here: https://profiles.ucsf.edu/daniel.legrange.
I will send him a email on Friday and want to tell him about our positive experiences with blind weighing and ask him to re-think his position and maybe offer both ways in FBT treatment in future. It would be great if some others who feel that this has changed much in their families would do that, too.

We are the parents. We are in charge. We should not need to fight the system about blind weighing if we think it is better for our kids.

Tina72
Keep feeding. There is light at the end of the tunnel.
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smileymum
Thank you, Tina72 for the link. We, too, are using blind weighing. I think flexibility is important; our kids have enough things making them anxious and they don't need another thing...I'll be emailing. Thanks for being proactive.
Smileymum
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ValentinaGermania
"Thanks for being proactive."
I learned in the last 2 years that information about FBT is saving lifes and I promised myself that all the time it took me to read all this literature and to talk to all these professionals will be used to change something in the system here in future. I did not have the power to do that until my d was really better but now I try to be the squeeky wheel...[biggrin]

I did not have problems with blind weighing because our GP did not know anything about that and I simply told him that is the way it has do be done.
But I read a lot about parents that have to fight the professionals to have their kids blind weighed and I think that is really not necessary.

Thanks for emailing him, too. It would be a great progress if they change it in the FBT manuals.
Keep feeding. There is light at the end of the tunnel.
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smileymum
Awesome, Tina72. You have such a positive mindset - one I intend to emulate - though we are still in the midst. Email to Dr LeGrange sent. 
Smileymum
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