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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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RebeccaEleanor
My daughter has had anorexia for 3 years but diagnosed 2 1/2 years ago when assessed by the local eating disorders team for a second time.  Not technically underweight when 1st seen but had a rapid weight loss in the few weeks before starting the second year of senior school.  Never really connected with the local CAHMS team and weight drifted down slowly for the next year, up a bit down a bit but always slowly down.  Never saw a dietician at the beginning, never given a diet plan and when finally given one near the end of that first year was for less calories than she was eating - so didn't put on weight but they wouldn't listen.  Then got transferred to a different service and outpatient treatment there went well with weight going up slowly but still in an up and down fashion and last July got to 46kg (37kg when we had started with them the previous October).  Then things fell apart due to team members leaving and illness and at this crucial point no support and weight over the next few months went down to 42kg and we are now finally back in the 45 - 46kg range and then COVID, reduced support and team members leaving.  Feel so frustrated.  There had been an admission planned to try and help her over her fear of 45kg - real sticking point but now cancelled and she feels that nobody cares, that they don't think that she is ill (medically) and not knowing what is going to happen is really distressing her.  We are continuing to try and get her to gain more weight but she hates herself so much at this point I feel like my heart is breaking.  Some of the time she eats the meal plan without getting distressed, other times she gets very distressed.  last week lost 260gm which isn't a lot but she had but on about 400gm a week for the 3 previous weeks.  Her emotions are then all so confusing for her part of her wants to put on weight so she can do some exercise - the school keeps putting out e-mails to make sure they are exercising but she gets upset if she gains and also gets upset if she loses as she then thinks that I will hate her and be cross with her.  I love her so much but feel so sad.  I don't know how to get past this hurdle.
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teecee

It’s great that she’s able to still eat most of her meal plans and put weight on. There does seem to be a point where they get ‘stuck’ but we just kept on pushing for full meals and snacks 6 times a day. I felt it was Groundhog Day discussions for a long time as to why she couldn’t miss snacks but we persisted. Also the mantra ‘everything in moderation’ as she favoured eating the same thing for supper and snacks.

We also went privately for EMDR which I know is not a consideration for a lot of families but our D was desperate to move forward and become unstuck we would have done anything. It seems to have done the trick and she is eating freely after a year of eating ‘safe foods’ to keep the weight up. 

One day at a time....if you can consider EMDR and she is in that place to want to progress then I would recommend. 

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Torie
Oh dang, it sounds like "the professionals" have really let your family down.  The good news is that you may be able to drag your d back to health in spite of them.

The thing that really motivated me to push through the refusals and pushback was knowing that - as the good folks here say - the only way out is through.  If "someone" (read: Me) didn't lay down the law and require full nutrition, ED would not let loose its grip of my d.

So many of us have found the "professional help" to be worse than no help at all.  Sucks.  Do you think you can require full nutrition and get your d back to the weight she needs? xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
Welcome. Thanks for finally posting. 
As Torie has mentioned it does sound as though the team has somewhat let you down, not recognising things initially and not really actively pursuing full weight restoration. How can we help you to keep on pushing through her distress and anxiety. It is normal for them to struggle with weight gain, it is normal for all gain to be distressing but sometimes certain numbers get stuck. There is no magic way of changing her ways of thinking to push through these numbers, for most the only way is to just keep on pushing past all of their misery. Hear her misery, hear her distress but her medicine (food) and the right dose (enough of it) must go in. It will never be comfortable for her, or not distressing. It is heart breaking to see, but not insisting on the treatment in the long run is consigning her to suffering for years rather than allowing her to fully recover and thrive. 

So how can we help you to increase her intake, how can you tweak things to make sure those three meals and three snacks go in every day?  This will also show her that you are taking her illness seriously, she needs the treatment.  She will have good days and bad days, but as time goes on and weight goes on, mostly the good days outnumber the bad days.
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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RebeccaEleanor
Thank you for your replies, I will keep trying. So hard as constantly watching everything she eats which can cause anger. Really upset and angry last night. But this morning normal teenage grumps.  It’s almost as though she has to have an explosion and let all her distress out and then it builds again over a few days and then gets triggered by some random thing that gets said or by asking her to stop dropping/crumbling food. Which I always do but most of the time doesn’t cause major upset.  
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Torie
Evenings / nights tend to be the worst, and unfortunately, recovery is never linear.   Good for you to stick to your guns and not get sidetracked by ED-isms and arguments.  Hang in there - it does get better.  Really. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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RebeccaEleanor
Took DD to be weighed yesterday.  Weight has gone up, which upset her especially when the Family Therapist told her that as things were going well she may not need admission when the ward is reopened after COVID.  They told her this by herself and it really upset her because it makes her think that they don't think she is ill and that they don't care and that they only care about her weight and not how she feels.  This then makes her want to lose weight so that they take her seriously.   She has not had bloods or obs done by the team in almost a year which also makes her think that they aren't worried.  Still no nurse or psychology support.  They are talking about setting something up on-line but have been for several weeks with no action.   Feel like I am ranting but just feel that if they aren't going to admit her we have been put through a lot of psychological distress for no reason.
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Enn
Many of our kids feel special when they are ill. They get a lot of attention. Is there some activity she likes to do so that the focus on her being just an amazing person is where she can find her place in the sun?

Would taking her mind of ED and moving it to non ED things be helpful? Just throwing out an idea. 
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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Enn
PS 
I am concerned she has not had a proper physical exam in so long. You really need to get that done. Can you call your doctor? Do you have a blood pressure cuff that you can do the blood pressure and heart rate? Or insist with the team that is just HAS to be done as that is a crucial part of ED evaluation. That is a point that is absolutely non negotiable!
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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RebeccaEleanor
The ED team won't do it as no nurse, GP surgery is basically shut because of COVID and they count this as routine as weight reasonably stable.  I wish I could get her to focus on her talents but she can never just enjoy something, she always has to compare herself to the very best so is never satisfied with her efforts. 
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LaraB

Hi there, particularly as your D had an admission planned, you should be able to insist on a physical evaluation. The fact that there is no nurse is not your problem. The team leader will need to find that resource. 

If your child needs lying and standing BP and pulse rate checked, why not phone the service first thing on Tuesday morning and insist on it. I have found sometimes you have to be ”Bolshie” to get what you want.

You sound deflated and I get that. Lockdown and team shortages don’t help!!!

but Well done for continuing to monitor meals and snacks and calling out ED behaviour and managing to support her to put on weight. I saw a great presentation the other day about ED which said something like if the flak is flying, you know you are on target. I know I don’t quite have that expression right!!! I know it is awful to have that anger around, but from what others have said, seems like we need to tolerate the distress. Really exhausting when it goes on for so long. We are still on a very prolonged refeeding journey here. 

it is challenging I know to try to get our kids to enjoy activities sometimes. Today my D and I are planning to dye our hair together as part of efforts to work on the building of a life worth living side of things. Xxxx

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Enn
Covid has made this quite difficult.
i was going to suggest she volunteer with animals or elderly. But of course she may not be able to with the shutdown. It could be very positive to help others  and not expect anything in return. Then the good feelings come from her being appreciated and not because she is the best. Could she offer to buy groceries and deliver to an elderly person who should not go out on their own? Or pick up meds? She could purchase the items and leave them on the doorstep . Getting their mind off of their own mind is hard, but it may be something that makes her feel valued. How about sewing masks for those in the neighborhood or crafts
to give to those in the neighborhood. A friend of mine put signs on our lawns saying we’re are all in this together’. I did not know who did that as it was on just a few
home. Then I realized. It was a lovely surprise and gracious gesture. 
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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Torie
Took DD to be weighed yesterday.  Weight has gone up

Yay, you!  That is what matters most, by far.

It is normal to have a more difficult day after weighing.  (Doesn't make it any less sucky to know that, I know.)

Hang in there and keep feeding. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
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They told her this by herself and it really upset her because it makes her think that they don't think she is ill and that they don't care and that they only care about her weight and not how she feels.  

If I had a dollar for every time I had heard this or something like it, I would be very wealthy. 
Great job on getting her weight up. 
Some thoughts on her response. Her response is expected. For my D I felt part of it was she needed others to know just how much she was hurting inside. The other part of course was when she heard statements that indicated recovery, her ED gave her a very hard time - she wasn't sick enough. This is also the reason Jennifer Gaudiani chose to name her book Sick enough. They are, even when they don't think they are. 

With a lot of anxiety related statements it is often helpful not to reassure. This one though I found it best to say things like I can see why you feel this way, I know that you are very ill. They know you are ill too, that is why they continue to see you. 

It does sound like she needs a medical evaluation, as LaraB has indicated there are systems in place to sort things out. This sort of thing can't be put off indefinitely till "after COVID". 
Keep up the amazing job you are doing. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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RebeccaEleanor
Thank you for the above, I will push the issue when she is weighed next week.  At the moment I am dreading going home from work - I am going to work and my husband is working from home, tomorrow he has a day off and my husband and daughter are going to go for a drive and a short walk to get out of the house.  They were planning to take food with them.  Normally I buy my daughter ready prepared lunches as I am at work and it just cuts out a huge amount of conflict - she eats it all and we know exactly how much.  However tomorrow she wants to make sandwiches to take and the arguments about this have started already - she is incredibly fussy with sandwiches - only likes ham in them, and I haven't got any in -(she hasn't had sandwiches recently) and she wants to put in marmite and I just know that this is going to cause a major outburst as there will be a huge fight about how much marmite / butter etc.  She has been texting me about this already saying we are both mean and that I don't care.    I will probably end up going to a shop after work to try and get something acceptable to both of us - meaty but not too thick and not too thin, it has to be just right - Goldilocks Ham!
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LaraB
I feel your pain about sandwiches- for many months my D would only eat one particular brand and thickness of bread. It sounds good that she has sandwiches as she hasn’t had for a while but it sounds like it is already causing her angst. Perhaps she could have something more before they go to reduce the pressure around the sandwich. And something to accompany it. X 
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teecee

Dear RebeccaEleanor I just wanted to say that I remember it wasn’t so long ago in our house that this was happening also. I just became sick and tired of every day being about food. I could not envisage life changing. I was thoroughly fed up of chicken...BBQ chicken for sandwiches ....Goldilocks sandwich exactly!! 

Now she does not want chicken in sandwich as “it’s so boring’”

Food today was pasta with spinach and ricotta cheese plus carrot cake and coconut/raspberry slice (half and half with dad) plus cheeslet crisp things and for tea...pizza (with chicken balti topping?!!) and semolina (which I hate but she loves!). Can’t get more jazzy than that 😂
Oh the relief at no further food battles...one day it just happens. I hope it happens for you very soon. Keep swimming, you are doing great. 

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Torie
Normally I buy my daughter ready prepared lunches as I am at work and it just cuts out a huge amount of conflict - she eats it all and we know exactly how much.  However tomorrow she wants to make sandwiches to take and the arguments about this have started already - she is incredibly fussy with sandwiches - only likes ham in them....

I wonder what would happen if you offered her two choices:  1) The prepared lunch you normally pick up or 2) The sandwich you prepare, as specified by you.  

Thinking of you. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Enn

Maybe it is not the time to try sandwiches until she eats them at home for a while first? 

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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RebeccaEleanor
Thank you everyone for your ideas. Just have to see how tomorrow goes.  Choice isn’t something she can cope with as will torment herself that she has picked a higher calorie option without knowing. 
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RebeccaEleanor
Currently switching to having zoom meetings with the family therapist rather than face to face +/- dietician, still don't have any other support.  They keep asking us what support we / my daughter needs.   But I feel trapped as they won't really give us any clear idea of what is on offer.  Can anyone give me an idea of what I should be asking for for my daughter who is almost weight restored but terrified of increasing her weight but knows that she has to if she wants to do what she wants to do like DofE, school trips abroad.  Her mood is low but better than it has been at times.   When she starts talking about doing those things I tell her that she needs to weigh more to be able to do them and that we need to be able to trust her.  She says all the right things but it doesn't feel sincere and I am not sure that she thinks we will really not let her do these things.
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MKR
Hi @RebeccaEleanor,

From what I understand, the Duke of Edinburgh awards need to be completed in stages of roughly 1 per year. In other words, if your d is to reach the gold award while at high school, she would have to get on with the bronze award tasks at age 15. I am only saying this because the accredited providers organize trips a limited number of times - so I am hoping your daughter will be motivated to reach a good weight faster in order to take part.

One more point: I hope the ED is not behind the wish to do DofE? It certainly was here. While we stressed the Service part (volunteering), our d insisted on Sport and Adventure. It turned out she found the hiking trip monotonous (though she enjoyed making friends).
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Foodsupport_AUS
It is normal for them to have a continued fear of weight gain for a long time. Even those without ED often express a fear of weight gain. Given you are still having troubles with feeding, maximising the support you need to maintain weight gain would seem important, and then support for your daughter as regards any ongoing distress she is feeling. Is she depressed, does she have other anxiety issues, how is she interacting with her peers? She may benefit from some CBT or even DBT if available to help her learn to manage her distress in a better way? 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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RebeccaEleanor
Thank you - I think that CBT would be useful for her as she can express her fears / worries.  We haven't been able to access any therapy through CAHMS in ages and never CBT - she had art therapy at the beginning - lovely lady but my daughter isn't terribly artistic so she felt like a failure at that as well.   We have had some therapy privately, not CBT as there was one point where we were getting no input individually for my daughter at all - this did seem to help at first but was every other week and since COVID has been on the phone - which hasn't been great as she feels self concious, and is worried that we would listen in- we don't.  However there is no communication between the therapist and CAHMS - previously because CAHMS were being sniffy about it and now they say they will communicate but nothing has happened.  If we could get all the therapy in one place it would be better.

With regards to the DofE she is doing Silver, she has always been a carrot rather than a stick personality, if you take things away her mood spirals down while if she has something positive to work towards she finds it easier.   Unfortunately since COVID so many of the things she was looking forward to in the next few months are no longer available.  This pushes her into there is no point there is nothing to look forward to so why should I make myself upset by eating.  The DofE is something that she wants to do, so hopefully by the time of the practice walk she can go.  It was originally going to be in June so that is one delay that has been helpful.
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RebeccaEleanor
So frustrated, switched to on-line zoom meetings, my daughter gets 30 minutes alone with the family therapist and this week my husband and I had half an hour with them most of which was just spent discussing the plan that there is no plan, my husband was not finding this easy to deal with.  He had been totally persuaded that an admission would be the best thing, that she would go in for a month and come out transformed (the admission was because stuck at about 45kg not for medical need).   He is very upset that she will not get the intensive therapy that the inpatients receive.   The inpatients that were discharged due to COVID are getting a lot more input than we are and when we request that we get what these patients are getting we continuously get fobbed off.   The therapist I think is good but he isn't a complete team.   We have an appointment arranged for an on line meeting with the new psychiatrist at the beginning of July so hopefully we will see an improvement in support then but at the moment we just continue to go on with no plan in place  and the feeling that admission has been abandoned but not entirely sure.  The uncertainty isn't good for any of us.  

The only good news is that her weight is creeping slowly up,  still very sad at times for no reason but slowly more of her normal self is present.
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