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rosa

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Reply with quote  #1 
My 18yo daughter was diagnosed with anorexia 5 years ago. To summarise our terrible journey, I recognised the illness early and got her referred quite early to CAMHS. She has suffered from anxiety much of her life. We were given meal plans and FBT with some CBT and family therapy/ support. As she hadnt lost a huge amount of weight (Height 171cm; from around 57 down to 50kg) she/ we didnt have a lot of help- but she managed to regain some weight (up to 54kg) and follow the meal plan partly. She then stopped attending appointemnts for around 8 months- I still attended. She then became severely ill exactly 2 years ago, stopping eating and overexercising very much (around 2h running per day). The weight dropped by 30% to around 40kg, she was medically unstable and very mentally ill. She stopped school, I stopped work. The team stepped up, advised admission under section on numerous occasions but also recommending to us that admission could be detrimental- very mixed messages. With daily crisis team support and lots of effort from my daughter, my husband and I and support from family and friends, my daughter made progress and reached around 52kg in 8 months. (This was very tough but the crisis was clear so my role seemed clear.) She returned to school and started CBT. The CBT seemed to help her and she gradually gained more weight and insight. Then she became 18 in June 17, the CBT was stopped after 30 sessions (prematurely in my opinion) and her care was transferred to adult services. There was a gap in support of around 3 months partly because she was given the option to defer the assessment appointment then there was a waiting list. During this time the weight went up to around 57kg (August 17)- a 5 year high. She found it very hard being this weight, she had no therapist or support except us (we recognise that we are key). She has been restricting since then and has lost maybe 8-10kg.
For the past 4 months she has been under the adult service and has 'chosen' to have fortnightly appointments. The team want her to have more frequent appointments and more support. Their approach is to try and be supportive so she begins to trust them.
She is applying for university which is very stressful and she is studying extremely hard. (I recognise that she is cognitively impaired and may not achieve the grades that she wants. She has been open about the anorexia in the uni application)She has become very socially isolated. She continues to overexercise- running up to 2h per day also walking and cycling and home exercises.
Her weight seems to be around 48kg now, she is highly anxious and the anorexic voices are very strong. The message from the care team is to be compassionate and supportive and to trust them. They seem to be familiar with the situation. As she is 18 we do not go to appointments and our daughter doesnt tell us what is going on. I have a monthly appointment with the lead psychologist, to support me as a carer.
I am not weight focussed as I recognise that it is 'state not weight' but I added the weights to my post to explain the story. I try all the time to separate my daughter from the illness (but it's hard..) I am exhausted. I try to look after myself by sleeping, swimming, doing mindfulness, seeing friends, working etc. I often find that going out of the house or away makes me more miserable on my return as I can see even more clearly how ill my daughter is. and the huge impact on the rest of the family.
My questions:
This forum seems to stress weight gain. I recognise that this is absolutely fundamental but our eating disorder service's approach seems so different. They seem to be waiting for motivation from my daughter. I feel that the ED is unlikely to allow her to 'choose' to engage. When I asked about this, they understood my concerns, but explained that they need her to want to engage otherwise she simply wont attend- or that she will gain weight then lose it again- as she has done before. I feel disempowered by the CBT approach and by my D being as 'adult' - I have no idea if there is a meal plan or what it is. So, I feel that I am watching her become increasingly severely chronically ill. It is agony. Our daily lives are so hard due to so many rituals and so much illness behaviour, with a lot of anger and rudeness from the ED.
I feel powerless to encourage eating or to reduce exercise. I have been trying to improve the relationship with my daughter by focussing on other things, other aspects of our relationship. This helped for a short time but the ED is so pervasive. It is so hard for me to keep picking myself up after being shouted at or bullied by the ED. 
I dont feel that I have the energy to take on the ED alone without our ED service.
Sorry for the long post. Any advice about the way forward- much appreciated.
dc

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Reply with quote  #2 
Hi! rosa,

Sorry to hear that your daughter lost so much weight. My daughter is 19 years and lost about 20 pounds 6 months ago. Like your daughter, she is an excessive runner. She restored her weight several months ago. Based on your description, the NO. 1 priority is to restore your daughter's weight first and as soon as possible. Forget about state right now. Physical health is the foundation for the mental health. The criteria is to gain about 2 pounds per week. I understand it will be very tough, but you, your team and D need to work together targeting on this goal. During the process of weight restoration, any exercising should be stopped. I will expect that your daughter's anxiety will go extremely high. That is normal. To me, excessive exercising = binge. The sooner her weight is restored, the better her state will get.  Since your daughter is 18 years, the process will be getting even more difficult. Do you have any leverage? like money, car, phone, and internet etc. You and your ED service first need to build a safe environment. In other words, she may not go to college any more. The safe environment could be either home or a treatment center. If it is not safe at home, then you have to send her to a treatment center. She may need to start from residential treatment, then PHP and IOP treatment. When your daughter's weight is low, her ED thoughts are very strong. What she is thinking is to eat less and run more. Do you know what are your daughter's interests or passion? Like my daughter, she wants to go to college. We use this to convince her to take the treatment. Please try to find the leverage and use it to attack ED. In the current stage, bringing her weight back to normal range is important. Later you can address her state. You also need to evaluate if the current ED service is effective based on your experience. If not, find another one which is more effective.

Send you the strength!

dc

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19 yr old d Dx Feb 2012. WR June 2012. Now she is in Phase III and enjoy her study and activities. Try to give the control back to her but still keep vigilant. 
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Foodsupport_AUS

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Reply with quote  #3 
No wonder you are so concerned about your daughter. It seems as though your support services have badly let you down. Yes many on this forum do emphasise weight, and more to the point full daily nutrition. It is not just the number on the scale but the adequate daily intake that is important. This is why we see children ill at all weights, overweight, underweight and normal weight. She will only start to get better when she is eating fully everyday, including stopping the compulsive exercise. Her team may feel the need to engage her in treatment - it is part of their role. This does not mean that you have to stand by the sidelines and watch. You are well aware of what she needs. A healthy weight for her body is going to be well above the 57kg she was when she first got ill five years ago. While not fully restored she will never get lasting recovery. The fear of pushing through this is what often leads to relapse. How can you set guidelines down for her that are separate to the team? You can use incentives to get her to have a daily adequate intake, stop the exercise. She is still living with you, in your house. Yes she will protest, but it is important that she knows that you know what she needs, even if she is too frightened to do it.
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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.
mjkz

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Reply with quote  #4 
Quote:
This forum seems to stress weight gain. I recognise that this is absolutely fundamental but our eating disorder service's approach seems so different.


You will never get to a good state without the weight unfortunately.  You are seeing a ton of ED behaviors at 48 Kilos so you are in essence watching her get worse and with your eating disorder service's blessing.

Quote:
They seem to be waiting for motivation from my daughter. I feel that the ED is unlikely to allow her to 'choose' to engage. When I asked about this, they understood my concerns, but explained that they need her to want to engage otherwise she simply wont attend- or that she will gain weight then lose it again- as she has done before.


Yes and no. While it is true that she may gain the weight and lose it again, the longer she is at a good weight, the better chance you have for brain healing and by virtue of that motivation and buy-in to recovery from your daughter.  I'm not going to say that she will never be motivated because some people realize how limited and sick they are and become motivated.  I'm saying the chances are not good and motivation is not enough.  The motivation has to be tied with action and that is where most people with an ED really fail.  They want to recover or make others around them happy.  They have the best intentions but when push comes to shove, they simply can't do it without a lot of support and motivation to keep pushing them on the part of the supports.

Quote:
I feel disempowered by the CBT approach and by my D being as 'adult' - I have no idea if there is a meal plan or what it is. So, I feel that I am watching her become increasingly severely chronically ill. It is agony. Our daily lives are so hard due to so many rituals and so much illness behaviour, with a lot of anger and rudeness from the ED.


There is a good reason you feel that way and it is because you are.  Now you do have a choice in whether or not you continue to watch this.  Some things you do have power and control in and you can decide not to let your daily life be affected by her rituals and illness behavior.  It is hard and it feels horrible doing it but you deserve to have relief from living day in and day out with an ED.   For me, I set down some very hard and fast rules for my daughter that she had to follow in order to live with me.  If she did not, her choices were a higher level of care or move out.  Moving out wasn't really within her reach although she was willing to try.  That can be the scariest part of saying enough is enough.  You have to be willing to risk a lot by saying this is the end and if you can't live with this then pack up and move out but it was truly what saved my daughter's life after almost two decades of ineffective treatment and both of us being held hostage.

Quote:
I feel powerless to encourage eating or to reduce exercise. I have been trying to improve the relationship with my daughter by focussing on other things, other aspects of our relationship. This helped for a short time but the ED is so pervasive. It is so hard for me to keep picking myself up after being shouted at or bullied by the ED.


You may have to take back power and sacrifice your short-term relationship with your daughter for long-term health and a better relationship in the future.  At no time did I allow my ED daughter to be abusive to me or yell. I would not be bullied by her ED and that was one of the requirements for me.  She had to eat what I made, how much I gave her, not purge at home, act like the adult she wanted to be treated as, and gain weight.  Nothing short of that was acceptable and if she did all that, I gave her a life.  If not, she needed to find another place to live. 

If you were living with a room mate who treated you like your daughter did, you wouldn't put up with it so why from your daughter?
Torie

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Reply with quote  #5 
Quote:
Originally Posted by rosa
There was a gap in support of around 3 months partly because she was given the option to defer the assessment appointment then there was a waiting list. During this time the weight went up to around 57kg (August 17)- a 5 year high. 


Yay, you!  That was awesome progress!
...
Quote:
Originally Posted by rosa
 weight seems to be around 48kg now, she is highly anxious and the anorexic voices are very strong. The message from the care team is to be compassionate and supportive and to trust them. ...


Trust them?  Uh, no.  She has lost weight under their care, right?

Quote:
Originally Posted by rosa
This forum seems to stress weight gain. I recognise that this is absolutely fundamental but our eating disorder service's approach seems so different. They seem to be waiting for motivation from my daughter. I feel that the ED is unlikely to allow her to 'choose' to engage. When I asked about this, they understood my concerns, but explained that they need her to want to engage otherwise she simply wont attend- or that she will gain weight then lose it again- as she has done before.


Oh dang, I wonder if you are stuck with professional "help" that is worse than no help at all.  (Happened to me and many others here.)

As FoodSupport said, your d cannot get well until she surpasses her previous weight of 57 kg.

I suspect many providers adopt the they-have-to-be-motivated requirement to limit their caseload and fill it with the "easier" cases.  You don't have that luxury, unfortunately.  

It is always hard to re-feed an AN sufferer, and it is harder at 18 than when they are younger.  But, really, your best chance is NOW.  You still have a lot of parental authority, but that erodes with each passing year.  

Be strong, Rose.  Your d needs to to kick ED to the curb for her.  So sorry you have been called upon for this Herculean task.  xx

-Torie

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

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Reply with quote  #6 
Dear dc, Good Support AUS, mjkz and Torie

Thank you so much for your kind, useful and wise responses, I really appreciate your support.

DC- I agree that the No 1 priority is to restore weight and stop exercise asap. I have leverage of money, phone and wifi so we can consider how to use these. Her passion is to get to university so we try to harness this.

FoodSupport AUS- I agree that full daily nutrition and stopping exercise are key and that I shouldnt just be watching from the sideline. The incentive that is most useful is her ambition to get to university and we try and harness this motivation.

mjkz- I recognise that a higher weight will allow brain healing; and that she has some motivation to recover but that she simply is not able to do this 'alone'. We need to set down clear rules and priorities for our household. Your description of what you accepted in your household was very useful.

Torie- I agree that we have parental authority and should use this, and that my D needs us to help her kick the ED.

Thank you all so much for your support. I feel that I am drowning so having help to prioritise things is very much appreciated. So, the priorities are weight gain (of course- but I'm not sure how- shall I wait until a crucial uni interview is over in 3 weeks time- shall I wait until I can discuss with her team- shall I start today..) stopping exercise (absolutely no idea how to stop this- we have hidden shoes and locked doors with no effect); using levers of money phone wifi (tantrums and more without a doubt- I know this is ED..)

My husband and I are strong together and New Year's Day seems an appropriate day to refocus on this Herculean task.

Thank you all again
Rosa
melstevUK

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Reply with quote  #7 
Hi Rosa,

I could have guessed you were in the UK without even checking - although I did, just to make sure.  You have been let down big time by your local services but unfortunately working in this secretive way when patients hit 18 is very common.  It does my head in, quite frankly - if the clinicians don't challenge the secrecy around the illness and encourage the patient to be open and use the family for support, it makes life very difficult, as you are finding.  Keep remembering that none of this is your fault and neither is it your d's, but an is such a devil of an illness when it takes hold.

Your d is clearly still in school and has plans for her future.  It is right that she has put on her application that she is anorexic because the university will have support services available and she should not be hiding it.

Right now, given how difficult the battle is to get her weight back up (and while I agree with others here that weight gain is paramount, sometimes as parents we have to be realistic about what we can achieve as well, especially in a UK setting) I think your priority needs to be to stop the exercise.  You say your d suffers from anxiety - is she on any kind of medication?  If not, medication could help.   Has she ever had a bone scan?  If not, I think one would be useful because at least it would show what damage may or may not have been done so far.  Does she still have periods?   If not, you need to spell out the dangers to her bones that the lack of oestrogen.

"There was a gap in support of around 3 months partly because she was given the option to defer the assessment appointment then there was a waiting list. During this time the weight went up to around 57kg (August 17)- a 5 year high."  Something was working at this point.  Do you know what it was, because the weight went up without any support at that time.

I think you have to give yourself some breathing space and think how best you are going to start bringing change in and getting back onto a recovery path.  I assume she will be going back to school after the holidays.  Does she carry on with this extreme exercise during term time?  Is she still doing PE at school - if so, this is one area where you have influence because you can ask the school to refuse to allow her to do PE as she is not well enough.  

Did she have friends before?  Can you help bring friends back into her life?  She appears to be exercising rather than socialising and trying to keep her on a normal developmental projectory is equally as important as getting her weight back at this moment.  She needs to arrive at a place whereby the illness is stopping her leading a normal life - which it is but she maybe doesn't realise it right now because the illness is so dominant.

Is she still eating three meals and three snacks?  If not can you at least bring regular eating back into the equation?  I would worry less about the relationship right now - and if you cannot get her to eat you can at least insist that she stops being so rude and tell her that you are concerned for her health and welfare, and that you do not deserve this treatment.  I suspect - and this is not criticism - that you are showing your d that you are worn out and once that dynamic is there, the illness runs riot.  Are you and your h on the same page and working together?  If so, it may be worth sitting down and getting a plan together to work out how you are going to tackle this, and then sit down with your d afterwards.  Getting yourselves back into a place where you have energy and feel empowered again will make a big difference - but that won't happen in a day and without planning.  You are doing so much that is good - looking after your own health and needs is one of those things.

The other thing to remember is that, as daunting as it feels, your d is still young in terms of her development and as she moves through from adolescence into adulthood, as long as you are on her case and never back down or deny that she is ill, you will get her through.  So recharge your batteries and think.  You may be able to get her back on board by saying you want her to be as well as possible for going to university and ultimately that there is no recovery without weight gain.  Maybe put the illness back to her and ask how she is going to achieve that because you will not stand back and watch her destroy herself.  And you have the rest of the academic year and holidays to get her into that state of wellness.  

Come and vent - this has been going on for a long time and clinical input has not always been as effective as it could have been.   I really am sorry for what you have been through and what you are still going through.  But try and keep hopeful because you will get that recovery for her.
Hugs - this is hard, hard, hard.



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FaithKeepsMeGoing

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Reply with quote  #8 
Dear Rosa, I'm so sorry that your daughter's team is shutting you out now that she's 18.  They aren't doing her any favors.  

I'm with all the parents here who are supporting more weight for better health - physical and emotional.  My daughter developed anorexia at 14, and by 18, when she went to university, she was still not fully weight restored.  Fortunately, she was able to attend a university that was nearby so that she could live at home.  Like your daughter, she had lots of anxiety and cognitive difficulties most likely a result of being underweight for so long.  At the beginning of her 2nd year of college, I was finally able to get charge of the situation and help my daughter start gaining  the weight that she really needed.  Over the next year or so she gained over 20 pounds.  She would never have been able to do it on her own-she could not make that decision on her own, and practitioners who would ask that of sufferers of eating disorders simply don't understand the illness.  As my daughter gained weight, it was like a veil fell from my daughter's eyes.  She knew now that ed had been keeping her from seeing how much she needed the extra weight gain.  I know that it doesn't work that way for everyone, but what I saw with my daughter made me see how impossible it is for our kids to help themselves or "decide" they want to get better.  They just can't.

Rose, I wish I hadn't sent my daughter to college without full weight restoration, but at least she was at home, and during those college years we finally licked her eating disorder (and a lot of ice cream while we were getting her there. [smile])  Please don't let your daughter go away to university without weight restoration.  My daughter would have had a far better college experience if we'd gotten the job done before college.  Her grades were good, but unfortunately, ED colored her college experience, and it was not the best of times for her.  I know it's a struggle when you're not getting help from the professionals who are supposed to be helping her get well.  Please hang in there - ed recovery is one of the hardest jobs you'll ever do, but so so worth it when your daughter is healthy.  

May the new year bring you and your daughter happier and healthier times!


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The Irish tell the story of a man who arrives at the gates of Heaven and asks to be let in.  St. Peter says, “Of course. Show us your scars.”  But the man replies, “I have no scars.”   St. Peter shakes his head and says, “What a pity. Was there nothing worth fighting for?”

rosa

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Reply with quote  #9 
Dear MelstevUK
Thank you so very much for your very valuable thoughtful and clear advice. It is helpful that you understand the UK system. We are certainly in the "stuck" category. I agree that stopping exercise is a good priority but I am still unclear how to do this. She will be returning to school next week and the exercise will continue. She doesnt do PE at school but fits it in around her lessons. She is not on any medication. She has never agreed to taking medication as she has been fearful of weight gain so did not take olanzapine when that was advised and does not take the oestrogen which is currently prescribed for osteoporosis following 3 bone scans. She has never had a period so her bones and brain etc are at risk from lack of oestrogen. I have wondered if SSRI/ antidepressants could help but doubt that she would take them.
Her weight went up over the summer when she was studying for an university entrance exam. She could see that her ability to study was improved with eating and higher weight. The exam was hard and she did fine but because she didnt do brilliantly the cost/ benefit ratio of being at a higher weight and eating more changed so she began restricting. As you know it is a vicious circle, the more she restricts the more she restricts. I know that she wants to recover overall but the suffering required to gain weight is so immense and she cant think longer term at the moment. (I realise there is suffering in maintaining, gaining and losing weight).
We are pausing to plan the way ahead and my husband and I are on the same page.
Our D used to be very sociable but that has virtually stopped the past few years. She is totally focussed on studying, university applications, exercise and anorexia. She found it immensely stressful to see family over Christmas, she only saw family for 2 days. She has refused to see family or friends or to come on family holidays for several years now. Last summer she had 8 weeks of holiday and studied for over 7 weeks. Agony. My sister got married last month and my 2 D's were bridesmaids. It was a huge struggle but both D's participated and it was very special in the end.
My D's eating has been very abnormal. She prepares all her food herself in secret so I do not know exactly what she eats. She tends to eat say midday, 6pm, midnight. A meal plan is a definite priority and my H and D wrote one today which is a huge achievement.
You are right that I am showing that I am tired and that that the ED is running riot. This is a very helpful insight and I am going to work on this.
My H and I have made some plans- first to get a meal plan, next to work on the times of the 3 meals and 3 snacks, then to focus on helping her to get back to school next week. Persuading her to reduce exercise is another priority.
Our aim is to encouraging her to keep going at school (only 6 more months), to be healthy enough to study A levels and get university offers. If she can manage this it will be so positive- then aim for full recovery before university.
Dear Faith
Thank you so much for your advice, it is very timely and helpful. I can believe and hope that a veil will fall from my D's eyes with weight restoration. That is my dream come true. I totally agree that college would be so much better when recovered and that it certainly my hope.
Thank you so much.
frazzledmum

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Reply with quote  #10 
Rosa, so much of what you have said resonates with me, D is currently studying for A levels, but doesn't want to apply for uni, which I am grateful for. My D turns 18 in May, possibly the worst time to transfer to adult services with exams at the same time. 
I have no advice, but am taking note of what everyone is saying, and I wish you the best of luck and lots of courage.
rosa

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Reply with quote  #11 
Frazzledmum
Thank you for your message. I feel encouraged when I hear that my situation resonates with others- as it is such a lonely and difficult path. Transferring to adult services at 18 is not ideal.. Wishing you strength too.
mjkz

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Reply with quote  #12 
Rosa, is she in any mind set to talk about cutting out exercise?  My daughter was a huge overexerciser and after being forced to stop thanked me later because her whole entire life was spent trying to figure out how to get enough exercise in.  She always had to do more than the day before and it soon was eight hours a day and still not enough.

When she was younger, I simply added a supplement for all the exercise.  That got harder as she got older although it did still work but key to stopping the exercise when she was a young adult was figuring out how to block the gaps when she was doing it.  She would run on her study period so we made sure she had no study period.  She took typing instead.  She would skip lunch and run so I would pick her up and have lunch with her.  When the voices in her head got really loud (it helped my daughter to hear ED voices telling her to do stuff like not eat or exercise like crazy), we made plans around how to block those out.  She would put on her ear phones and play music.  She would come to me and tell me so I could help her figure out something to do.  When she was older, I knew stopping all exercise wasn't going to happen so when she would come to me, we'd go for a walk.  We'd do a very slow walk together.  We made rules around what she could do after meals (she felt urges to exercise a lot after meals and snacks).  We worked as a team to figure out when her urges were really strong and then how to overcome those urges.  We wrote out a plan of action so in the moment, neither of us had to think of what to do.  It was all written out in front of both of us and that took some of the emotional energy out of the situation. 

It took a different approach when she was older than younger but it was very effective.  We adjusted our plan of action as needed and it really worked well for us.
dc

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Reply with quote  #13 
Dear rosa,

When I read your post, it reminded me what we had been through in 2015. Like your daughter, my D loves exercising and she was a long distance runner at high school. She was the captain and MVP in XC and track & field. I totally understand how difficult situation you and your husband are in right now. On one side, you want D to finish her high school study and get a college accepted since she only has 6 months left. On the other side, she is struggling with the ED. Since she is still exercising, it is almost impossible for her to gain weight. I have some suggestions may be helpful.

1. It is very good that you already have the meal plan. The next step is to follow the meal plan including the three meals and three snacks. Is this possible to monitor all of her three meals? You have to eat breakfast and dinner at home with her. Is it possible to eat lunch with her at school parking lot? This way you can make sure that she executes the meal plan. It is not easy to monitor her if she eats snacks. Weighing every week will tell you if she eats enough food. Here is how we weigh D's weight: Every Saturday morning we weigh D before breakfast and after pee. Only underwear is allowed. My wife sleeps with her on the Friday night. In this way, you can prevent your D from cheating her weight. 

2. You may need to talk to your D's coach and explain your D's situation. Make sure her coach and you are on the same page. At least there is someone to watch her when she is doing exercise. If she is doing some excessive exercising, the coach needs to stop her. If she consumes too much energy, the coach should tell her to drink Ensure or eat some high calories food like energy bar.

Hopefully, all of above will help her either maintain or gain some weight when she is in high school. Basically it is to help her to finish high school study. It will not help her to recover from ED. 

For the long term, you may need to ask her take a gap year before going to college. If your daughter is not in full remission and goes to college, she will definitely relapse.

After she graduates from high school in May, you need consider about sending her to a good treatment center like UCSD or ERC at Denver for the treatment. This requires you and your husband to do a good planning ahead. First try 3 month treatment in the summer, if it is not enough, you may need to extend it.

Once our kids have ED with exercise compulsion, it is very difficult to stop it by herself or by ourselves at home. For example, she can run away from home. It happened to us many times. She needs a more restrict environment (like treatment center) to force her to stop exercising. Unfortunately it will be extremely tough. 

Send you the strength!

dc
 



__________________
19 yr old d Dx Feb 2012. WR June 2012. Now she is in Phase III and enjoy her study and activities. Try to give the control back to her but still keep vigilant. 
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"The darkest night is often the bridge to the brightest tomorrow."
Torie

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Reply with quote  #14 
Quote:
Originally Posted by dc
For the long term, you may need to ask her take a gap year before going to college. 


That's what I was thinking.

University is challenging enough without ED - the first year, in particular.  Personally, I would not send my d to uni without AT LEAST a solid 6 months of remission (able to maintain proper weight, socialize, do all the normal teen things).

I know dealing with AN is extremely hard; you are tired of it; it isn't fair at all.  But, it will never be "easier" than it is right now.  

I'm sorry.  I know this isn't what you want to hear ... at all.  But really, your best chance to drag your d back to health is right now.

Hang in there.  I hope 2018 brings better things to the Rosa Household. xx

-Torie

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

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Reply with quote  #15 
dc,

Unfortunately in the UK we do not have the luxury of being able to arrange inpatient care when we want it.  The specialist facilities are bursting at the seams everywhere and even if parents have the money to pay for a private stay, there is no guarantee that this can be arranged.

One of the huge failings of the NHS in the treatment of eating disorders at present is the total lack of flexibility in response from both clinicians and services.  We can't step up and step down in intensity of support with any ease - all patient care depends on clinical decisions and usually eating disorder patients are only taken into hospital when they are really sick, which then takes up all the beds and there is little scope for getting treatment on a short term basis.  It is incredibly frustrating but as parents our hands are very often tied and if we try and 'take control' when they are adults - the services are very against this way of working in general so it puts backs up and puts the patient as piggy in the middle.
There are not many parents who would have the means to afford to send their child to UCSD but that would be the ideal treatment.  Your post on it has been amazing.

Rosa - the important thing right now is getting that meal plan in place and stopping the weight loss.  You may be able to motivate her to face down the suffering and anxiety that it takes by reminding her of her ultimate goal of finishing the school year and allowing her brain to be able to function at its best.  It may help to focus on the food being required for her brain more than her body and reiterating that you know that this is not her fault but that food is her medicine (which it is).  And just keep using that mantra when you get going.  In terms of stopping the exercise - can the school help out in any way?  Can you put the teacher responsible for her welfare to put the ban in place?  Does the school know of her illness and just how much is taking away her life?  

I would also take a pragmatic stance about the medication - ask her why she wants to suffer so much when there are things that could help.  Would she run with a broken leg? (she might try!) but ultimately she would listen to her body if there was physical pain and psychological pain is just as bad (if not worse).  

The fact that you and h are together in this and working as a team is a great help.  So much easier fighting two against one!  

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Kali

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Reply with quote  #16 
Hi Rosa,

Welcome to ATDT. I'm so sorry that your daughter's team has not been able to be more effective. I have also had an 18-year-old who was ill. Since you have been successful in the past in helping to bring her weight up, perhaps you can do the same thing you did during the previous refeedings. I understand how terribly frustrating it is when the weight goes on but then it is lost again and how exhausting to consider having to do it all over again. Do you still have the meal plan from the first time you weight restored her? Perhaps you could use that or a version of it or create a new one from scratch. Can you start today?

Can you reinstate family meals and sit together and eat? Could you go back to that instead of having her take her own meals? Can you insist that she stop the exercise? For example, when she tries to go out to run you could say, let's take a walk together. If you have a dog, take the dog with you, then walk together and talk for 15 minutes and come back home. (I did actually do that. I also hid my d.'s running shoes at one point. We luckily had a shoe closet that was kind of a big mess and I told her they were in there "somewhere") Can the team help with this and let her know firmly that she needs to stop exercising? (Add more voices to the chorus)

During refeeding I would create the meal plan and then post it on the fridge so she could see what we were going to have. The meal plan itself was a collection of different high-calorie meals that we rotated and I pretty much made it up, the only requirements being that it had to have a variety of food groups and enough calories. I didn't measure anything but we eyeballed adequate portions. Can you encourage her to meet with the team more often as they want to do that? They will be able to recommend hospitalization if that becomes necessary, right? Don't wait for her to want to get better though, but do encourage her to continue to be in treatment, and do encourage/insist on full nutrition every day. Just take it one day at a time, and keep feeding her at home. 

She seems driven to go to college which is very positive. If she is accepted can she defer for a year if she is not well enough to attend?

Sending warm wishes,

Kali

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Reply with quote  #17 
Thank you all so very much for your wise and caring responses.
mjkz
Sadly she is not in a mindset to reduce exercise, her main aim is to get good grades and to get to college so we try and remind her that it would give her more time to study but even this does not reduce the exercise compulsion. We suggest walks, with our dog but this ends up being in addition to her running.
My D talks about the loud ED voices- thank you for your advice about blocking them with music- I will try and suggest that. It is a great idea to have a flow chart of plans of how to respond to the urge to exercise. 
Many of these ideas depend on a reasonable relationship with me or my husband. When the communication and trust are there we can discuss and plan things but when she is unwell the relationship deteriorates, she becomes suspicious, irritable and untrusting so the situation spirals down.

dc- I would love to eat meals with her but she resists this totally at present. She used to eat meals and snacks with the family when she was doing FBT but the CBT model is that she takes control of preparing her food. (This is agony for me)
I would love to support her as you descibe. I would like to be able to weigh her but sadly she would not cooperate. She used to train in high level cross country teams but now just runs alone so she doesnt have a coach to advise her on exercise or nutrition. I am trying to get her to gain weight to allow her to continue at high school and recognise that a gap year is appropriate. I am delighted to say that she has started to consider this. I certainly would like her to be fully recovered for 6 months prior to college.
melstevuk
Thank you again. I agree that the priorities are the meal plan and stopping weight loss. She is very motivated to finish school, get good grades and a uni place. We have found this is the best way of motivating her- eg reminding her that food is 'brain fuel'. School is aware of the illness but she just goes in for lessons so they do not have much control.

Kali
When we were successful in the past with weight gain, our D was either cooperating with the meal plan and doing FBT (aged 13-17) or eating for brain power for an exam (aged 18 doing CBT). We have numerous plans but the current issue is cooperation.
We have family meals with her 2 siblings and we long for her to join us. We have tried to encourage her to join us, even just to sit with us, to remind her of the pleasures of family meals. The reasons that she doesnt eat with us include having many rituals, that the CBT has encouraged her to prep her own food, and that she says she just wants to study.
The exercise compulsion is so strong and reasoning doesnt work. She has run without shoes, climbed through windows, gone running before anyone else is awake etc.
I have tried tirelessly to get her to engage with the team- trying all angles- including how she needs to demonstrate to university that she is looking after her health- but she does not appear to be accepting the support offered.

Thank you all for your many suggestions- all appreciated and I feel more encouraged and inspired by the advice.
Rosa
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Reply with quote  #18 
I have often wondered what CBT consists of in terms of treatment for eating disorder patients.

I am utterly gobsmacked that it includes encouraging your d to prepare her own food - how is that encouraging normality in a family setting? So many clinicians just play right into the hands of the eating disorder in adult services and this is just another way to do that.  Why on earth does it not consist of encouraging the patient to sit with the family at table and share meals??

I despair sometimes, I really do.  

Rosa - you are just one of many parents who have to fight both the illness and the system as well.  It makes me want to weep/
Hugs.  You need them.




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Reply with quote  #19 
MelstevUK
I totally agree with you- how strange/ counterintuitive it is to encourage such an ill person to take responsibility to prepare meals alone- it seems to be the opposite of FBT. Here is a loving family, eating healthy normal meals, longing to include our loved one. 

CBT-E seems to be the most popular treatment here- I wonder if that is the case elsewhere?

I have wept and my heart has been broken, again and again. Thank you for your hugs- I need them. Thank you for your continued support, I appreciate your wisdom so much.

Rosa
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Reply with quote  #20 
Quote:
When the communication and trust are there we can discuss and plan things but when she is unwell the relationship deteriorates, she becomes suspicious, irritable and untrusting so the situation spirals down.


That was why I suggested writing it all down.  Have a plan of action that is set up while she is calm so that you can put it into action when she becomes suspicious, irritable, and untrusting.

If FBT was working so well for you, you can still institute it at home and let adult services do whatever they want.  She is still living in your house and has to follow your rules.  I actually did FBT with my daughter starting at the age of 21 and without a supportive team.  My daughter's team was saying the same things your daughter's team is saying but they couldn't argue with results.  If she is engaging so little with the adult team, why not reinstitute what worked in the past?  I would also add food or a supplement to her meals every time she exercises.  I would assume you are shopping and paying for what she eats.  I would tell her the kitchen is off limits and she can't cook for herself anymore.  In the end, she lives in your house so you are allowed to set up rules like that.
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Reply with quote  #21 
mjkz
Yes, you are absolutely right that it makes sense to write down a plan when things are calm.
It is very helpful to hear that you started FBT when your D was 21 without a supportive team.
What you are suggesting makes a lot of sense- to take back control, not pay for her foods, to try and get her to eat with the family. This would be a huge shift and could be exactly what my D needs. I want to consider timing too- on the one hand my D is very ill and it is urgent to improve her health; on the other hand I dont want to destabilise her any more right now as I want her to do her best at an important interview and important exams in the next few weeks then further exams in June.
Thank you.
Rosa
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Reply with quote  #22 
Rosa, I have been in that place where we put off pushing for weight gain and recovery because there are outside stressors as well, be that exams, study, social events. There is never a good time to put life on hold, but every day she continues to be ill, and it sounds as though she is getting progressively worse, her illness is gaining in strength and the risks to her are increasing. Her illness will argue that she doesn’t have time, but the fact is, now is the time to act. My D has been ill now for more than seven years, with the last three years in particular being a constant balancing act between pushing for recovery and other factors being in the way. We are now at the point that she is gaining some weight and eating better than ever before. For my D the rules have been clear, no exercise, maintain weight and periods, if this is unable to be achieved then she would have to withdraw from studying. She was willing to work with this, and although no major progress was made there was some. I at least had the luxury of time with her still lving at home, now 21. She know she has to be weight restored and managing things herself to move out.
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Reply with quote  #23 
Quote:
I want to consider timing too- on the one hand my D is very ill and it is urgent to improve her health; on the other hand I dont want to destabilise her any more right now as I want her to do her best at an important interview and important exams in the next few weeks then further exams in June.


I remember being in that place too.  On the other hand, what is more important?  Her health or being successful in her interview and exams?  You can't expect her to put her health first unless someone who loves her shows her that her health is the most important thing-way more important than school, exams, interviews, etc.  There will always be time for school and life after she is healthy.  She can't be successful in life if she is still sick or dead.

My daughter did school and college things prior to getting healthy and it was quite frankly a waste of time and money. She was successful but did most of her college years from hospital rooms (sadly we both considered that successful).  If I could do it all again, I'd put her health and well being before her schooling.  I didn't do that and it made it that much harder when I started doing FBT to get through to her that nothing mattered but her health.  I didn't do that earlier because I was afraid of losing a relationship with her and I thought she'd hate me for life.  I wanted to be a good parent and support what was important to her. What I learned was that I needed to prioritize for her when she was so sick and couldn't see it.  College, university, etc. will be there for her entire life but she can't do that unless she is healthy.
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Reply with quote  #24 
Rosa and all those not in the UK!

It is very difficult for anyone not in the UK to understand how not getting qualifications in school is a huge obstacle to moving on later - education is another area where there is not the same flexibility as in other countries.  There is no custom of keeping back pupils to repeat years - it never happens, so once the school qualifications have been missed - obtaining them in colleges or taking a different path is a time consuming process.  Nothing wrong with that - but it is not easy and I fully understand why Rosa and her d would prefer to push on through this year so her d can obtain those qualifications.  She can easily take time off after that. 

I am not suggesting that health is more important than education - but in the longer term keeping that normal trajectory going means a more straightforward path after that.  I wonder if saying that you will pull her out of school if the running doesn't stop may make her try harder.  It might even be worth insisting that if she runs in the evening after school she will not be allowed to go in the next day.  If you can get the school to work with you on that idea, it may help.  If she goes into school when you have forbidden it, and then the school office don't allow her in - she may lose the plot but so what?  If she lost the plot and started shouting, everyone would see how ill she is.  Finding ways to put barriers to behaviours can help stop them.    

Rosa - you are in between a rock and a hard place.  Have you been able to tackle the idea of a meal plan yet? Does your d like who she sees at the ed service?  If not and they are making things worse in terms of eating - would you consider having her care transferred to her GP and her being weighed at the practice if she agreed to cooperate with you around eating?  Would she agree to that?  My d went under our GP for a while with the proviso that she was transferred back to CAMHS if he felt she became too medically compromised because they were just not backing me at all, and in fact taking the old style approach that the patient was choosing to be ill.  

I wonder if it would be worth asking to speak to a clinician at the service to express your concern - you have a right to do that.  Or write a letter to say how you think their approach is unhelpful.  It would make you feel better if nothing else!!

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Reply with quote  #25 
Sorry Rosa.  I think some of the ideas Mel came up with are very good ones tied into keeping her in school while still getting better.  On the other hand, maybe looking into how she can get the qualifications if not on a normal path might help motivate her to improve her health.  At a certain point though you will probably have to make a choice between keeping her on track academically and keeping her healthy.  I always vote for health overall.
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