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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Chames
Daughter is weight restored but the mind is the worst it's ever been. Almost 3 years since diagnosis, multiple hospital admissions for self harm, suicide attempts, fainting spells plus the anorexia. 2 inpatient admissions in a private hospital for eating disorders (medically stable) plus 4 mental health unit admissions. Tried FBT unsuccessfully 3 months after diagnosis and currently attending day program for eating disorders into our 14th week. Yes she eats what they give her, with the fact she can't go to school if she doesn't (she loves school and wants to go back) but with me it's a bit more relaxed (yes my fault. She doesn't want to eat meat, wants to be vegetarian but I won't allow it. She does have shepherds pie or lasagna or spag bol so she does get her red meat, eats fish and chicken as well). We had a big fight last night which then my 20 year old son got involved then my husband and so I had enough and sent her to school with her packed lunch (meals supposed to be supervised at school and have been for the past 2 weeks) and I knew she wouldn't eat anything and found out she didn't have recess so I went back at lunch to supervise and she told me to f off. Fine I said but you know the consequences of not eating. About 5 mins before arriving home she send me a text saying she's eaten all her lunch in the school taxi and also gets an instagram friend to text me saying she's so proud of her for eating her lunch and not to be so hard on her she's had a bad day. Fine. For the past few weeks she's been allowed to go for walks every second day as long as meals are done. Meals not done today in my presence so I'm not allowing the walk. She walks into the house asking if i got her message i reply yes. Then says she's going for her walk. No I say. Long story short she's gone off fuc....n cu*t, f... bi*ch I hate u blah blah blah. I know this is not my daughter it's the disease but sometimes it feels like we're going backwards not even one step forward.

I am so over this. How are things even worse than when we began when she's weight restored!?! She's told her team she has no intention of recovering and will starve herself again when it's finished. She says day program made thing worse and I don't know if that's far from the truth but of course I never said that to her?!?! Has anyone found FBT/Maudsley unsuccessful and what did they do that didn't totally ruin your family like this has. I don't know what else to do. I am ready to leave the house and not come back for a while I can't do this anymore.
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Ellesmum
Hi, 

we spoke elsewhere, it worries me hugely her team want to decrease her calories as you mentioned, this is a very important part of the story and you feel she needs a little more weight which her team are against so to my mind we have a child who is nearly there but is not being encouraged to cross the finish line which is a horribly familiar story in ED treatment.  

Im hoping someone from your part of the world can recommend a better program.
Ellesmum
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tina72
Hi Chames,

a few thoughts from me:
Why do you think FBT did not work for you and your family? What were the problems then? You wrote you tried it unsuccessfully 3 months after diagnosis and to be honest it takes most families more than 3 months to see progress with FBT so what was the problem?

Her behaviour shows that there are still a lot of ED thoughts left and that she might probably not WR as you think. At age 15 they are still growing a lot, the body develops female curves. So at that age there is normally no goal weight and no WR. Does she have constant periods? Does she already have a female body? Did she grow in the last year?
How was her target weight set? Many professionals set target weights too low and that keeps a lot of ED patients from ful recovery. They stay in a still sick state for years. Do you have historical growth/weight charts from her?

It is also normal that behaviour gets bad again around WR but from your lines I read that her behaviour did not improve up to now at all, so that might not be already "extinction burst".

"About 5 mins before arriving home she send me a text saying she's eaten all her lunch in the school taxi and also gets an instagram friend to text me saying she's so proud of her for eating her lunch and not to be so hard on her she's had a bad day."

I would not trust her with anything at the moment, this can be a ly, and an instagram friend is NO proof that she ate anything.
If she hates that you supervise lunch at school and tells you to f*** off I would do exactly that. We have a say here: if you see the flak you are normally over the target...if you see ED fighting back you are normally doing something right.
Keep feeding. There is light at the end of the tunnel.
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Chames
There was no target weight discussed. The team are worried about continual weight gain (???) And want to keep an eye on it so it doesn't get out of hand hence the meal plan decrease to be reviewed on Monday after seeing what her weight does. FBT initially didn't work for us cause my daughter hated the therapist. I asked for someone else and they couldn't provide us with someone else. Thathe we the main reason and also my own lack of understanding about the disease and treatments. So we went to private inpatient which worked while she was there for 2 admissions but she reverted back to old behaviours once at home again. That was January this year. Since then we're back to FBT with day program
And I feel it was working  (because she resists so much) but her mentally and behaviours are still there and getting worse I feel. I've been looking to CBT-E and dbt even holistic approaches,  I'm getting desperate. I still monitor school meals and as I write this she was refusing dinner but has since got out of her room to eat since I threatened she would not be going to school at all for she didn't eat. She ate it all except half the drink  (she had to make up afternoon dinner and supper so easy too much) but I've left in on the kitchen  bench to be finished tomorrw2 and she knows this. She's sleeping now rather than having to sit with me. 
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tina72
"The team are worried about continual weight gain (???)"

That is REALLY worrying as constant weight gain of 500-1000 g a week is normal and should be the target.
How do you then know she is really WR?

"FBT initially didn't work for us cause my daughter hated the therapist."
Really? They ALL hate the therapist because the therapist helps you to fight AN. My d did not even talk to the therapist. That does not make progress with FBT impossible as in FBT not the therapist is doing the hard work but the parents. This must have been a not very experienced team you got there...that is sad as this could have helped you a lot.

Make sure you SEE all the food going in. She is not allowed to leave the room. If she sleeps all the time to avoid eating wake her up in regular terms of meals and snacks and require to eat, then she can roll over again. Sleeping in was a common trick to avoid breakfast here.

"I've been looking to CBT-E and dbt even holistic approaches,  I'm getting desperate."

In many cases any therapy does not work until they are WR + some months x and brain recovery starts. I am quite sure from what you write that in your ds case brain recovery did not even start up to now because she is still malnurished. Does she have at least 30% of her intake as fast? That is really important as the brain runs on fats...

"the meal plan decrease"
What does that mean? Did they take back intake and calories? Why???
My d is in year 3 of recovery now and still needs to eat the same amount as in year 1 just to maintain her weight (she is 19 and grown out).

What about periods?
Keep feeding. There is light at the end of the tunnel.
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Chames
Which is why I'm not giving up on fbt but rather the program she's at....but she hates it there and I don't want her to think evryone time she hates it we leave. I'm looking into an eating disorders coaches and to continue with fbt because I think that's the only way to go. I'm just scared I keep making the wrong decisions. 
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tina72
FBT is in my eyes never the wrong decision as it is evidence based that it works in most families and the big plus is that once you know how to fight it through you can do it always again if needed.
You write in your profile that she is phase 2. Maybe they gave freedom back too early, that is a common mistake...

How can we help you?
I would suggest to find a new good FBT therapist (via skype if needed) and to give it a new start and to find out how much and what she needs to eat to get brain recovery started. Here it was only 2 kg above the target weight the professionals had set. Can you imagine that? If I had kept her at that low weight (it was just BMI 18,5 so just not underweight) she would be sick until today and did not make any progress.

If she is still in a bad state and you try something else to help her that is a plan B and never a wrong decision. It cannot stay how it is at the moment, that is no recovery.
Keep feeding. There is light at the end of the tunnel.
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Ellesmum
I just realised, if there’s a chance your d might read you might want to ask a mod to get your name changed. 

I agree with everything Tina says too. 
Ellesmum
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scaredmom

Welcome to the forum. I do hope you find the support and information you need.

It sounds quite overwhelming at this time.
It sounds like ED is really stuck in her at the moment and there is still a way through.
Just a question: this day program where she eats, but then is allowed to go to school, where she does not eat? Sorry I am a bit confused about that.
I wonder if a restart is needed to regroup to come up with a new a different plan as this one is not necessarily helping her or you? . It sounds as if the team is letting you down about worrying about the weight. Have you had a face to face discussion with the team about the plans moving forward and how they fit into YOUR plan?
I do think that thinking about CBT, DBT, maybe meds and other treatment modalities.. may be an avenue to consider while you feed her.
Is your d on meds and what is her weight percentile from childhood? That would be a place to start looking at what you should be aiming for with respect to WR.
 
I find it helpful at times to make lists about what I want and then tackle one at a time. 
What are the most concerning things for you and d at the moment? For sure weight is one, I  think and ensuring proper behaviour I would think is  also important ( ie not being rude to her family). 

As for making wrong decisions, I support you thinking outside the box and getting a coach! I think that could be very helpful. And with ED there is only feedback, we learn and what worked last time may not work today and it is always a moving target.

Welcome again and I know there are others from Australia who will be her shortly!
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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WeRnotdone
   I have been doing FBT with my daughter for almost 2 years. I am in the U.S. and FBT is not the normal treatment here. When she was first diagnosed her therapist, nutritionist, Dr all recommended hospitalization. This was before I knew fully how anorexia affects their mind. I felt judged especially from her school counselor and teachers for not sending her to Rodgers at the time. They all spoke of how great it was, however it did not feel right to me. I am slowly learning and have made many mistakes that I am trying to learn from.
  I think BMI is bull. My daughter at a BMI of 17.5 had her system shutting down. Now she is 19.5 and still mentally struggling. I believe she is very slowly coming out of her 2nd relapse. I have taken over all her food amounts she does have choices but not on portion and she is out of the kitchen but this is progression for us. I have moved to stage 2 too soon in the past and I hope to get better advice next time. 
   I was even doubting myself too and thinking she might progress better at ERC treatment center but am holding off for now because the threat of going here is helping her comply. Not that I like using threats but ED is a tough task master.  ((())).😊
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debra18
Don't worry. It's called natural consequences, not a threat. If you tell a child you cannot run in the street because you will get hit by a car this is a natural consequence.
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tina72
debra18 wrote:
Don't worry. It's called natural consequences, not a threat. If you tell a child you cannot run in the street because you will get hit by a car this is a natural consequence.


This is so true, Debra18, and that is what we often mean with changing the parenting style here.
If your child was 2 years old and wanted to play near a busy road you would not have allowed this to happen. You would not have discussed that with him and you simply would have taken him to the safe garden again. You would not have thought "oh, I threaten my kid to play in the garden".
AN is a life threatening disease and to fight that and say NO is no threat, it is needed. We are the parents, we are in charge and we must make even decisions they do not like now and then when it is needed to keep them safe.
Keep feeding. There is light at the end of the tunnel.
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melstevUK
Hi Chames, 

Sorry for all that you are going through and that the team is not as robust as you would hope for. 

Your d is young and if her thinking is better then that is usually an indicator that weight is moving in the right direction. The problem is that you cannot have true weight restoration in the teens as it is going to be a moving target into the twenties while the brain and body fully develop. I don't know why ed services can't seem to make that connection. 
If d ever tells you face to face that she refuses to recover, tell her that you will support her as long as it takes but that you will not stand by and let her be an invalid all her life. She didn't choose to be iil and while she may be too ill yet for recovery to be a motivator, it is worth telling her in no uncertain terms that she is not going to spend her whole life like this and that she needs to think again about her behaviours.  A clear message which indicates that you will never back down may help a little bit. 
This is such a tough journey but you are doing well, even if it does not feel that way.
Believe you can and you're halfway there.
Theodore Roosevelt.
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tina72
Can you please change the name, melstevUK? It has been changed in her profil.
Can all that have posted above please do that?
Keep feeding. There is light at the end of the tunnel.
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melstevUK
Done tina72. Thank you for highlighting.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Chames
Thanks to all for your advice and comments. Someone asked about the day program she attends? It's supposed to be a 10 week intensive day program for eating disorders. 9-4 Mon to Fri then home on weekends. From 9-12 they have school lessons, we have breakfast, dinner and supper at home but other meals at the program. From 1230-4 its intense therapy with psychologists, psychiatrists, dieticians etc plus group, individual and family therapy. the idea is to get them weight restored then integrated back into their own school with outpatient team set up for appointments once they leave. We've been doing the program for almost 15 weeks in between self harm incidents, running away, suicide attempts plus the anorexia. She's at school 4 days a week now and attends day program 1 day a week. The team they want to set her up with for outpatient appointments is the initial team we left before doing private inpatient admissions hence why I want to look for an eating disorders coach.

This morning was terrible. She refused breakfast and her meds this morning. So no school as the condition is she eats so she can go to school and do activities etc. I also took her phone away because of her behaviour. She has totally lost the plot now. Screaming and crying loudly, blocking my way when I try to walk through the door. Ripped up all her motivational posters and pictures she drew, off her bedroom wall. Banged her fists on the wall and I think she's hurt herself. Told me I was making things worse by listening to the day program she goes to, only her friends on instagram can help her (hence also why I took her phone away), I torture her, she hates me, I'm punishing her for struggling. I said I'll take her to the hospital she said no. I offered my phone to ring and speak to her therapist she said no. Whenever I go into her room to check if she's ok she goes crazy and it all starts again so currently sitting in the lounge room. So my head is all over the place today. Do I leave day program (she would love that) or stick it out as its literally another 2 weeks (2 days in essence as she only attends the 1 day now) and do I look for alternate treatment? Lost.....
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tina72
Hi Chames, sorry that it is so hard at the moment.

We have a say here, when you see ED screaming and fighting you are normally doing something right. I know it does not feel so but it was great that you refused school after she refused breakfast and it is normal that ED freaks out when it does not get what it wants.

I would suggest very seriously that you check that "friends" on instagram. It is very likely that these are other anorexic girls that tear each other down the rabbit hole. You might need to block instagram for some time x. Please check what she is doing on her phone and on PC.

Screaming and violence is not o.k. Someone here said it is an eating disorder and no rudeness disorder. Try to set boundaries with behaviour. Tell your neighbors what is going on at the moment and think about calling the police BEFORE something happens. Some regions have special mental healthy officers and it might be helpful to have an emergency phone number and to call them if she freaks out again. In some cases it was only once needed that the police came around and told them that this behaviour is not acceptable.

The day program sounds not bad. What do you think is her problem with it? Is it ED that hates it? Then it is better to leave her there...

How can we help you?
Keep feeding. There is light at the end of the tunnel.
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Chames
She hates day program yes...which makes me believe it is working. Only thing is that they're happy with her weight now and don't want more weight gain....but mentally she's worse than ever. We just came back from emergency where they checked her physically and mentally. She hasn't had any food or drink today at all....but they said she eas ok p long as she promised to eat when she got home!  Ha! They have no f.... idea! Mental health team came by for a quick word with her and said she was ok too (????) So back home again where she's screamed and wailed her head offf, put 2 more holes in her bedroom wall and smashed her brand new laptop for school. So I ring the hospital cause she wants to talk to someone and when I finally get through she screams and refuses to talk to them. I told her just because she has an eating disorder does not give her the right to act like a spoilt 3 year old! And it doesn't give her the right to damage my house and things I have paid for. I told her if she wants to be treated like an adult and make decisions regarding food etc she needs to start acting like one. I let her with her dad and went out to walk around the shops. I've had enough I can't to do this anymore.
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Ellesmum
Chames wrote:
She hates day program yes...which makes me believe it is working. Only thing is that they're happy with her weight now and don't want more weight gain....but mentally she's worse than ever. We just came back from emergency where they checked her physically and mentally. She hasn't had any food or drink today at all....but they said she eas ok p long as she promised to eat when she got home!  Ha! They have no f.... idea! Mental health team came by for a quick word with her and said she was ok too (????) So back home again where she's screamed and wailed her head offf, put 2 more holes in her bedroom wall and smashed her brand new laptop for school. So I ring the hospital cause she wants to talk to someone and when I finally get through she screams and refuses to talk to them. I told her just because she has an eating disorder does not give her the right to act like a spoilt 3 year old! And it doesn't give her the right to damage my house and things I have paid for. I told her if she wants to be treated like an adult and make decisions regarding food etc she needs to start acting like one. I let her with her dad and went out to walk around the shops. I've had enough I can't to do this anymore.


Its worrying they are happy with her weight and don’t want her to gain more, you need to follow your instincts here,  it’s a common problem that people are kept sick by not being encouraged or allowed to get to their ideal weight.   It’s unbelievable she didn’t have anything during the day and that was not seen as a massive issue.   No wonder she had a meltdown, mine would too with no daytime food.
Ellesmum
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sandie
Sending you strength. Xx
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Foodsupport_AUS
Quote:
 We just came back from emergency where they checked her physically and mentally. She hasn't had any food or drink today at all....but they said she eas ok p long as she promised to eat when she got home!  Ha! They have no f.... idea! Mental health team came by for a quick word with her and said she was ok too (????) 


It sounds like a terrible day with ED. You are absolutely right in sticking to your guns. Not eating, no school until done. No phone until done. Making sure she gets assessed. Setting consequences for destroying things. I guess the thing is how to move on from here. 
Being in Australia it is important to know that most Emergency departments would only ever consider admission for medical instability. Most don't offer tube feeding or supplemental feeding either. Psych team will be assessing her for the risk of suicide, need for compulsory or voluntary mental health admission. So when they say she is OK - terrible wording - they are saying they won't offer her admission right now. My D also had a few visits to ED, I learnt that it was important to be clear as to why they were assessing her. It was to determine if she needed immediate hospitalisation. So OK means you don't need it right now but you might tomorrow or the next day. Changing the script was helpful and changed how I approached these visits. 

As for the team being worried about weight gain, unfortunately it is an all too common problem. Some kids will do OK over time at the same weight but deliberately trying to stop gain can reinforce the ED thoughts. Most kids need to keep on gaining into their 20's so will naturally slow down gain down the track. Stay strong. Tomorrow is another day. 
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
Chames wrote:
She hates day program yes...which makes me believe it is working. Only thing is that they're happy with her weight now and don't want more weight gain....but mentally she's worse than ever. We just came back from emergency where they checked her physically and mentally. She hasn't had any food or drink today at all....but they said she eas ok p long as she promised to eat when she got home!  Ha! They have no f.... idea! Mental health team came by for a quick word with her and said she was ok too (????) So back home again where she's screamed and wailed her head offf, put 2 more holes in her bedroom wall and smashed her brand new laptop for school. So I ring the hospital cause she wants to talk to someone and when I finally get through she screams and refuses to talk to them. I told her just because she has an eating disorder does not give her the right to act like a spoilt 3 year old! And it doesn't give her the right to damage my house and things I have paid for. I told her if she wants to be treated like an adult and make decisions regarding food etc she needs to start acting like one. I let her with her dad and went out to walk around the shops. I've had enough I can't to do this anymore.


It is really bad when the team lets you down and I think it is time for a serious talk under 4 eyes with them.
It is ridiculous to say she is WR and does not need to gain any more. She is 15 and not grown out and still needs to develop an adult body. There is no fix target weight for a growing child. This needs to be said.
It is also not o.k. that you are send home from emergency when she did not eat and drink anything but they do not know enough about EDs there. That is sad but no single incident. That happens quite often. When I was in emergency with my d for 10 hours last october they did not serve anything to eat there. When I asked for some food for her they said "we are no restaurant here". Unbelievable to give an anorexic person no food for 10 hours. She was glad I was with her and could leave the ward to get some food organised.
The mental health team should be ashamed for telling her she was o.k. without having eaten and drunk! That is not o.k. and I would have a serious talk with them or their supervisor. This should not happen at all!
Keep feeding. There is light at the end of the tunnel.
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scaredmom
You are right to let her know that you cannot tolerate her behaviour. I know someone on the forum had a safe room in the home. Where the child was to go and there were no things to break. I cannot recall who had a quiet dark room with soft pillows to throw or lie on but it may be an idea? 
You are doing great parenting. You have set limits and rules and telling her that she has to act better was fair and correct, imo. 
I am glad you went to the shops for some alone time. I hope you do that more often and take time out for you. 
Sending some calm and kind thoughts your way for a more peaceful tomorrow.
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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Mamaroo
Sorry to hear you had such a tough day. Which part of Australia are you? 

From what you are writing she is not WR. How was her target weight determined? I've attached the weight height growth chart for you. If you have historical weights and heights you can plot it on the chart and see which percentile she is. Look for the percentile graph around 1 or 2 years before ED. My d is on the 90% and fell below the 50% at her lowest weight. She is now back to the 90%. As you can see from the graph, the height gains stop at around 16 years of age, but the weight gains continue until their 20s.

I know this is really hard, but just keep on feeding, lots of fat and protein especially.  Sending you lots of hugs 🤗🤗🤗🤗🤗
images.png 
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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Chames
They never set a target weight at all but couple weeks ago she put on 1.5kg in one week and said 'we'll have to keep an eye on that we don't want it getting up higher than that'. They've reduced her meal plan slightly and we're due for weigh in this week. We live in Sydney 
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