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coconut

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Reply with quote  #1 
My d is possibly being discharged next week after IP admission. I am scared that she may deteriorate as there is no fear of losing home leave. I know there is never any guarantee on discharge. I could do with some advice on how to deal with al this....
tina72

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Reply with quote  #2 
Hi coconut,
a very warm welcome from Germany and so sorry that you have to be with us here.
I am sorry but my english is not that good, I don´t understand your sentence "I am scared that she may deteriorate as there is no fear of losing home leave" fully. Can you explain a bit more what you fear and how we could help you? Are you afraid that she may deteriorate with the transition home or that she might not want to be discharged?
Please help us with some more informations about your situation and with direct questions.
Great that you found us here, this forum is a lifesaver and helped us a lot.
Tina72
toothfairy

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Reply with quote  #3 
Hi Coconut, 
Welcome to the forum.
My advice to you on discharge is to clear your diary and continue treatment at home, 3 meals and 3 snacks plated and chosen by you and of course supervised.
I would also supervise her for up to 2 hours after her meals to prevent purging by vomiting and / or exercise.
How old is she? Is she going back to school?

Tina, I think what coconut means, is that ONCE SHE IS HOME, she does not have the threat of home leave being cancelled like she did in IP.
 

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in very strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine. Recovery is possible.
Kali

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Reply with quote  #4 
Hi coconut,

Welcome to ATDT. I hope you will get good support here. Try visiting the learning center and looking up some of the topics about feeding. There is also a high calorie thread on the board where you can get some ideas about meals to serve.

https://www.aroundthedinnertable.org/post/high-calorie-suggestions-696425#gsc.tab=0 

I'll try to describe some of the things we did when our d. came home from residential treatment, where she had been for 3 months.

Before discharge: I met with her and the dietician there. My d., 18, was required to make a "mealplan" which was basically a list of breakfast, lunch and dinner meals she could eat which had enough calories. She was told to eat a certain number of calories a day to maintain but really that was up to me as I prepared all of her meals. She was fully weight restored. I took the list home and the first few weeks I prepared meals from the list, and when I saw that she was compliant with eating, I started adding more items in slowly to broaden her diet. Research has shown that the best chances of recovery come when there is a broader range of foods that the person with an eating disorder will eat.

Also before discharge: Therapy sessions with the social worker to talk about the transition to home. This helped to set the stage for our expectations for both her eating and remaining in treatment when she returned home. And let us talk about the conditions on which I would want to see her go back to residential if she could not comply. She was really happy to be coming home and said she never wanted to go back. Later, when things got difficult (I won't sugar coat it, there will be difficult days) I was able to remind her of how she had said she didn't want to have to go back ever and make clear what the requirements were for that: eating and being fully nourished.

After Discharge: I changed the location of where we ate. We had previously eaten in the kitchen and there were way too many battles there over food and the room was full of bad memories for me. So I changed it up to eat in the dining room so it was like a new chapter in our lives, and I used nice china, put some flowers on the table, and played soft music while we ate and tried to make good conversation. I also tried to up my food game and really make things that tasted better, with fresh spices and arranging it nicely on the plate. If she was struggling and ate slowly, I stayed at the table with her and used distraction and conversation while she finished her meal. I tried to create some enthusiasm about food by trying new recipes and talking about how to make things. 

I posted the weeks menu on the fridge, since it seemed to help her if she knew ahead of time what I was serving. I tried as much as possible to keep to a schedule similar to the times the meals were served at the RTC. We did 3 meals and 2 snacks a day since we were on a maintenance diet. They still need quite a lot of calories after weight restoration.

After I saw that she was compliant with eating and had maintained for a few weeks, we started to hand back some control. First we had her start to plate her own meals. I supervised and if she took too small a portion, asked her to take more. I ate every meal that I possibly could with her. Then we started to ask her to take her own snacks (I was there and watching but she got them out and ate them in front of the tv)

She stepped down to a day program where she ate 2 meals a day 5 days a week for the next 4 weeks and had additional therapy. After that she stepped down to an iop where she attended 3 days a week and ate 2 meals there on those days. 

So we gradually started meals at home. First it was just weekends and evening dinners. After a month it was all meals at home 4 days a week and dinner the other 3. 

After 2 months of partial care, she she stepped down to an outpatient situation: with a therapist, nutritionist and medical dr and psych as needed.

So we went gradually back to a situation where all meals were eaten at home.

If your daughter has had a problem with purging consider having her visit the bathroom before eating, not after. I have to admit for many months I went into the bathroom after her to see if I detected any signs of purging, which I didn't find. She had not been allowed to go to the bathroom after eating while in the hospital, and that had seemed to break the cycle but I was still vigilant.

It is kind of nerve wracking at first when they come home. My daughter was not recovered and even though she was weight restored she thought that she was enormously fat and wanted to lose weight so it was really a struggle. I was so happy to have her here but was so frightened that she might refuse to eat. She seemed to be very motivated by the idea of going to college, going out with friends and some things she wanted to do in her future, so I tried to help her paint a picture how her life could be when she was better and was able to use that as motivation. Today she has been able to do many of those things. She has traveled to other countries, is back at college, has her first coop job, and is living with a really nice group of girls independently. We became closer than before during her illness and talk and text multiple times a week and I see her once a month for an eyes on visit.

What is your daughter interested in and how can you encourage her to visualize her future without an eating disorder and take her first steps toward it? Are there some things she can get involved with when she comes home? You didn't mention how old she was but the idea is to help gradually replace the eating disorder with real life and interests so that the ED becomes less and less important.

Let us know how things go!

warmly,

Kali



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coconut

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Reply with quote  #5 
Hi Tina72,

Your English is not bad at all. My d is in hospital IP but spends 6 nights at home as they are getting her ready for discharge. If she refuses meals then I can call the hospital and there is always the possibility of her returning back there and have her home leave reduced. She is keen to be discharged so complies with meals at home, on the whole. If her weight is stable next week then she will be discharged. She will be monitored by the community team on a weekly basis. I am scared that she will return to pre-admission meal battles as she doesn’t have the fear of being back to the hospital.
coconut

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Reply with quote  #6 
Hi Toothfairy,

Funnily enough her discharge could not have come at a worse time. I have work commitments next week due to various people being away which means I have to be there even more with even less support. My d does not eat with my anyone else other than me which makes things even harder. She has been home for most of the week minus one overnight stay at the hospital for the last month. She is attending school most days but only half days.
coconut

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Reply with quote  #7 
Hi Kali,

All of you have been so responsive. It is great to finally find a place where I can say what I feel & get advice from parents who have been through all this. My d is 15 & was diagnosed six months ago following an acute paediatric admission due to physical symptoms. We were discharged and mo jotted I. The local ED service for two months where she continuesd to deteriorate. Every meal was a battle. She wouldn’t eat with anyone else being present which meant I was battling six times a day every day. I took her to all her appointments as she refused to have my husband around.. she was referred for IP and whilst we were waiting for a bed she took an OD. This expedited her admission. She has been there for four months. She 7ate all her meals from the dShe worked hard and got home leave pretty quickly. She was spending 5 nights at home from six weeks after her admission. She restarted school this year after having missed three months. She is gradually reintegrating back there. She has public exams this summer which she is keen to do as she does not want to drop down a year from her friends. This is very stressful for her as it’s difficult to concentrate on studies when she is so anxious and low. She has not seen friends outside school for five months as she seems to have developed social anxiety.
She chooses her meals, plates it herself. I supervise as to the amount as we work with portion size rather than calories .This is what we have been told by her current IP team. She sometimes even cooks her meals under my supervision which she used to do before her Illness. To be honest I find this very difficult as she is quite fearful & controlling of how much oil etc.
I am just worried that there may not be enough pressure to continue eating & engaging with school when she is discharged and we will go back to the same road again.,,.
Foodsupport_AUS

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Reply with quote  #8 
Coconut, welcome to the forum. 

It is great that you feel that you have found somewhere where you can get support. 

It sounds as though you have much to be concerned about. Your D sounds very much still as though she is controlled by her illness and it also sounds as though your treatment team has been encouraging/expecting your D to take control of her illness and her recovery. Although this can work for some older teens and adults, often the fastest and most effective recovery comes through the parents and the use of FBT. In the early stages of illness it is often impossible for someone with an eating disorder to manage their food, meals, intake and life effectively and safely. It is the expectation for them to do so which often leads to a revolving door of treatment. 

You mention D's anxiety and isolation. How is your D going with respect to weight restoration? How is she viewing her eating disorder? Often social anxiety and isolation is part of the illness, suggesting that she has a very long way to go. 

If I had an series of wishes with respect to your situation it would be going back to you plating and preparing all your D's meals, with her eating them under your or your husband's supervision. She would not be preparing meals at all at this point. It is clearly anxiety provoking for her. She would be continuing to gain weight. The treatment centre would be working with you to support all of this, and make sure that if D is unable to continue at home that she could be readmitted. 

Is any or all of this possible. Do you have any choices in treatment? You don't mention where you are.


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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.
coconut

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Reply with quote  #9 
Hi,
We are in London. My d does eat all six meals, so far. She is weight restored and has been for two months. I used to plate her meals until two months ago when she was allowed to maintain her weight. She started to plate her own food under my supervision. Most of the time she accepts my advice of having more. She said that she wanted to get back to normality and then iP consultant felt it was ok as she was continuing to maintain weight. All her meals are under supervision. She had lost some weight when she started to spend more time at home and started school. I was told by the consultant that this was to be expected and they increasedShe has slowly gained weight over the last two weeks and if her weig they will discharge her from the IP. She has been transitioning into community / outpatient care over the last two weeks, which is a different hospital. This is where she was before being admitted. They will see her weekly for weight, meal plan checks, therapy. We will see the consultant on a regular basis too as well as Family therapy. So I guess she will continue to have the support just no threat of having to return back immediately if she doesn’t adhere to meal plan. I guess there will always be the concern of being readmitted if she doesn’t adhere.....and that is what I am worried about. I don’t think I can cope with her deteriorating again. I know there are no guarantees..... just hope & perseverance
melstevUK

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Reply with quote  #10 
Coconut,

Welcome to the forum.  Yet again I could have guaranteed that you were based in the UK where IP services will totally mess up the transfer back to the patient being at home.

I would take absolutely no notice of the service wanting d to maintain her own weight and make choices around food.

I would insist that she does not come home unless you have total control of her meal plan and what she needs to eat - otherwise everyone is setting her up to fail.

Be as hard and as tough as you like - your d is not well enough to be able to make any kind of choices around eating.  The way you 'sell' this to your d is that she can have the freedom to live her life, back in school, seeing friends, going out - but between mealtimes, maybe allowing her to be out of the house with friends for a snack.  

The transfer from IP services in general is badly managed in the UK - they expect the patient to be able to manage choices around eating when they are simply not recovered.  Even if the patients want to stay well - they will naturally start to eat less than required because that is the way the illness works.

I hope you can get these arrangements put in place.  My d had three IP placements in all - the first she was discharged with her being in charge of the meal plan (Dietician even dropped the amount of calories when actually, as soon as patients are out of hospital they are using much more energy and need their meal plan increased on discharge) and she went downhill again.  The second time I had found FEAST and I ensured I was in charge of her meal plan and we did well.  (Things went pear-shaped after a holiday, but that is a different story).

However, if things do not go as well as planned - keep d interested in her future and focusing on the life she wants to live.  She is still young and needs to move from adolescence to adulthood, when eventually she will leave the illness behind. It may take longer than you want or hope, but she will recover.  But the best thing at the moment is for you to be in charge of her meal plan.  

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Kali

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Reply with quote  #11 
Hi Coconut,

I agree with the others; it is better if you are preparing the meals, and her only job is to eat them until she is weight restored for a longer period of time. That is how we handled it. You could try encouraging her to study or read or watch movies or spend time with friends or relax/nap in the late afternoons, and then you can just take over the food prep. 

Also in our house, 15 year olds did not take responsibility for their meals or cook our dinners. When my non ed child was 15 I still did all the shopping and prepared meals. 

Quote:

I supervise as to the amount as we work with portion size rather than calories .
 

It wouldn't hurt to try and get a calorie count as to what she is eating just so you can make sure she is having enough. Many parents here have found their kids continue to need an elevated amount of calories for some time after weight restoration. 

It does sound as though you were able to get her into treatment at an early stage and she has a very good possibility of full recovery. The next period of time may be the most difficult and will require vigilance on your part to keep her eating and weight restored at home. But it is a good sign that she is weight restored and has been compliant with eating her meals. You have done all the right things so far.

warmly,

Kali

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tina72

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Reply with quote  #12 
Hi coconut,
now I understand your question better and I am sure you will get great advice here.

We had a quite similar problem last year in German IP. Here it is also common that patients are in charge for food intake and plate themselfes and that parents are locked out and should not be in control for food. If you have read a bit around here you know by now that FBT and ATDT do just the opposite and this is very successful.
To understand that right: Here in IP my d was the oldest girl, the youngest was 11 years old, and they wanted this sick 11 year old girl control her food intake. No 11 year old girl would do that in real world. AN and EDs get the kids back into a state of a little child and they can not control their food intake. It is like putting 3 bottles of whiskey in front of an alcohol adict person and say "please control your alcohol intake for this week".
What is the consequence: There were 6 kids in IP with my d. We took my d out after 3 months against the will of the psychologists and continued at home with FBT. 4 of the 6 kids returned to the hospital within 3 months after being discharged because they were not ready to live at home because no one helped their parents to feed them and they could not do it on their own. 1 girl went to another IP. My d was the ONLY kid in Spring 2017 who didn´t come back. I am sure this was because of FBT and the great people here on ATDT.

So what did we do:
We could not go back to square one with FBT because my d wanted to be in charge for something because of her age and because IP here worked with a lot of punishment and humiliation. So we did a slighty different FBT and started between phase 1 and 2.
Our contract to come home was that we are in charge for food. She was allowed to work with us on the weekly meal plan (she was allowed to decide WHAT she wants to eat, but not HOW MUCH). She was allowed to chose snacks out of 3 proposals from us. We ate lunch and supper together with hubby, breakfast and the snacks were supervised by me. We tried to have a calm and normal atmosphere at meals. Mostly we ate in front of TV, that was great distraction.

We took as much routine as possible home from IP. We had the same meal times (we did lunch and supper an hour later to give her more time for digestion because supper was at 6 p.m. in hospital). I took the meal plans from the last 4 weeks with me and we started by doing these meals at home (I changed only small parts we liked more).
She had to go to a weighing every 2 weeks. It started to encrease her anxiety around WR and so we did blind weighings since than. That worked very well.

Your d will try to restrict again at home if you are not consequent from day 1. AN patients love routine and rules, so if you try to keep the routine and rules from hospital, you will not need to fight that much.
I understand that you fear you have no possibilities of punishment when she doesn´t fear to go to the hospital again. To be discharged with ED means not that you will never see a hospital again if you do not work together. So I told my d that if she is not compliant about being a team with me she could go and pack her bag and I would take her back to hospital. She didn´t dare to try that and I only had to say that once.
But try to think about leverages instead of punishment. That works much better. We had "be able to dance again", "do my driving-licence", "get a car at 18". Your d is much younger, but I am sure there are things she is fond of. Does she have hobbies? Is there a music star she likes most? Can you get her with a day-trip to XY? At the beginning short-time leverage is best: if you have finished your meal, we can go to the library, look at the neighbors puppy, take the dog for a walk, visit your friend xy.

You said she was allowed to maintain her weight. Are you really sure she is WR as long as she is showing still so much AN behaviour? Normally an AN patient should gain at least 1 kg each year until their mid twenties. Does she have her period? Is she at least at the weight before AN plus 1 kg for each year since it started?
I ask this because many professionals set the target weight way too low. In our case my d didn´t grow any more and they took a BMI of 18,5 which is ridiculous. It means just that you are not underweight any more. She needed a BMI of 19 to feel a bit better and we are now heading 20 and I think that might be o.k., but if its not I will increase her weight further on. There is no magical weight number when ED is gone. It is "state, not weight". You need to refeed her until her AN behaviour is totally gone.

"She had lost some weight when she started to spend more time at home and started school."
She will need more calories when she is back to school ful time. Learning takes a lot of calories. The brain needs a lot of fat to work. My d recently lost 1 kg just by learning for the exams.

Another practical tip:
When she is discharged, try to slow down work for some weeks so you can be with her.
Try to talk to school that she can do a less stressy schedule for the first weeks and that she doesn´t have to write any tests. In US that is called 504 I learned here, in Germany it is called "Nachteilsausgleich". Sick children can get more help in school and we should ask for that.
Invite some friends before the first day in school so that she feels better integrated.
Cook and fill your freezer before she comes home. Sleep as much as possible.
Get some help from family and friends if there are siblings or for garden and laundry.
Try to do something nice without your d with hubby every week. Care for yourself. It is a marathon and you need long-term-power.
Try to do something nice with your d every week that has nothing to do with food. That helps you to recover your relationship.

I was so afraid to take her home. I thought I cannot do that and we will lose her again. But before IP we did a lot to get her to eat (and were not successful), but we never dared to put a plate in front of her and simply require to eat that. It worked from the first day. Not without fight and complaining, but in the end she ate all we served her. With FBT we got her weight back, we fought fear food and we got our d back. She finished the year in school (same class although she was not in school for 4 months - her teachers were GREAT), she did her driving licence, she went back to dancing, is integrated with her friends again and is doing her final school exams (Abitur in Germany) at the moment. She still struggles a bit and I would say she is 80% in recovery, but she is happy again, a nice and charming young woman.
So have a plan and than DO IT. You can do that. You know what she should eat. You are her mom. You fed her all her life and it worked until ED came into the house. In your heart you know how to do that. Listen to your gut.
Read Eva Musbys book if you didn´t have already. I take it still now once or twice a week to re-read how I can do things better. It helped us a lot.
Come here and vent and ask as often as you need. There are always nice parents around 24/7 and they all know what you are talking about. No matter if our kids are 8 or 18 and on which continent we live, ED is always the same. And recovery, too. Food is the secret. Food and love.
Tina72


toothfairy

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Reply with quote  #13 
Hi,
I am shocked that your D is expected to do this herself, given her history and the short duration of treatment.
Recovering from an eating disorder takes a very long time, at best 2-3 years, but often 5-7 years.
It is completely ridiculous to expect your D in that condition to be able to cope. It is setting you all up for failure and relapse. In my opinion.

This is one of the big reasons that these hospitals and units have revolving doors.

She needs a HUGE amount of support for a very long time, a few years most likely.

Let me give you a big warning now....Your D is 15 , as I just said it takes a few years to get them into good recovery.
This time flies. She has now approx  a 2 and a bit years to get into recovery before she turns 18 and can refuse treatment.

My situation is a positive story, my kid was ill at 13 and we have treated the illness very aggressively since diagnosis, including 4 months in hospital and then I have treated him with FBT at home since. He is now 16,5 and in strong recovery, but even in year 3 , we are still working on the final bits of brain healing.     I have literally given 24/7  and 365 to his recovery , It is a vile illness, it is as serious as childhood cancer with a 20% mortality rate.The point here is how long it really takes and how much support they really need.

My advice to you is to cook, plate and  supervise her very heavily for a very long time. I would also question if she is really weight restored and keep pushing the weight up. Add Butter and cream to everything...
The days and weeks after discharge are SO important to set up a pattern and routine. I would definitely not take my eyes off her for at least those weeks.
Best wishes

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in very strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine. Recovery is possible.
toothfairy

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Reply with quote  #14 
Here is a very good thread on stages and timelines for your information...
http://www.aroundthedinnertable.org/post/stages-and-timelines-and-how-they-set-us-all-up-to-fail-7917698?highlight=stages+timelines&trail=25#gsc.tab=0

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in very strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine. Recovery is possible.
tina72

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Reply with quote  #15 
"I took her to all her appointments as she refused to have my husband around."
I would not accept that. You are a family and you fight that disease together. You need the help of your husband to be able to stand this long-term.
I think it is ED that tries to separate you from each other and that tries to destroy your family.
My d had problems to eat with hubby at first, too. Looking back I would say ED had problems to eat with hubby because he was calmer and stricter than me. It was less possible not to eat with him.
Tina72
coconut

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Reply with quote  #16 
Thank you all for your advice. It’s all so daunting... My d does eat when my H is around just not alone with him. I have always taken her to her appointments as my job is bit more flexible due to support I have. She is menstruating over the last three months. This had stopped for 5 months. She has had a pelvic scab and bone scan, which are both normal . She chooses her meals under my supervision and managed to eat without too much difficulty at present. We have managed to get her weight restored pretty quickly according to IP team. She has had home leave pretty quickly after admission so we have been manager meals at home. Her weight decreased slightly when she started school which I think was due to anxiety. She has always been very independent with her meals even as a toddler. When she hit 11 yrs or so, she liked helping me in the kitchen. I know you all may think it is ED related but I also have spent a lot of my younger years helping my mum in the kitchen. My D & I would cook, listen to music , dance whilst waiting for food to cook. It was a special time for the two of us. I want to re create that. She does not have any desires for the future. She does not wish to see friends, go out, shop or anything. Occasionally she will ask to go shopping and enjoy it. So it is difficult to paint a future and try to aim & focus on that. I try and create & hold onto situations /moments that seem to make her happy and ED seems to be a little further away..,,
Foodsupport_AUS

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Reply with quote  #17 
I would see her inability to see a future as part of her eating disorder. It is also commonly a sign of depression. Is she being treated or managed for this in any way? Although malnutrition can lead to depression, the reverse is also true. My D had depression which pre-dated her ED and then worsened with her illness. 
Things that helped for my D was my being aware of what she used to like prior to being sick. Gently nudging her towards this. On occasion I even arranged "play dates" for a 15 year old. I also arranged activities for her when she could think of nothing for herself. It does help to keep some of those  thoughts at bay, but if she is that ill she needs intensive care from either yourself or from someone else. 

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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.
Torie

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Reply with quote  #18 
Quote:
Originally Posted by coconut
My D & I would cook, listen to music , dance whilst waiting for food to cook. It was a special time for the two of us. I want to re create that.


It is great that you have been able to create and enjoy this special time in the past, and it makes sense that you look forward to restoring it in the future.  However, I would urge you to proceed s-l-o-w-l-y.  The only things that really matter in the short term are that she eats enough, that she doesn't purge, and that she doesn't have another suicide attempt.

As toothfairy said, these years are precious.  I cannot state that strongly enough.  My d, like yours, was ill at 15 then weight restored, giving us several years of normal eating and normal teen behavior.  She is now off at university, and please believe me when I tell you I wished -so much - that she had had another year or two under my watchful eye before heading off to independence.  

WHatever you need to do to restore your d's health sooner rather than later is worth it.  It will suck so much and require sacrifices you never signed up for as we have all found, but you will be glad to have made whatever sacrifices turn out to be necessary. 

Keep swimming,  xx

-Torie

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P.O. Box 1281 | Warrenton, VA 20188 USA

US +1 855-50-FEAST | Canada +1 647-247-1339 | Australia +61 731886675 | UK +443308280031 

This forum is sponsored by F.E.A.S.T., an organization of parents serving parents and caregivers of patients of all ages with anorexia, bulimia, and other eating disorders. Information and advice given on this forum does not necessarily represent the policy or opinion of F.E.A.S.T. or its volunteers and is meant to support, not replace, professional consultation.

F.E.A.S.T. is registered as a nonprofit organization under section 501(c)(3) of the United States Internal Revenue Code.

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