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mulberry

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Reply with quote  #151 
Hello to all,

Thanks for the replies, it is good to know that there is support out there.

I've been reading Eva Musby's book, and it makes a lot of sense, especially now we are so many weeks into this, it is just that I am struggling to access my calm inner whatnot all the time.  I find it accumulates, so if we get to the evening having had a bad day (low intake of food) I am very on the edge of panic.  I have my own anti-depressants now, I don't know if they will help when they kick in.

Mid73 - thanks for this, I'm definitely coming to the point of us drawing a line and saying "this isn't working for us, what's next?" so seeing the therapist on our own would be a useful move.   They were talking about increasing her anxiety meds as it is on the lowest possible dose at the moment, so I'll probably push for this as well. 

They have talked about the "enhanced care pathway" which seems to mean us travelling over to the centre to eat more meals there; officially, there is support available to come to our house for mealtimes, but I get the impression that becuase we are 45 mins drive away, there is some reluctance to do this becuase of staff shortages.  However, I think this would be the most useful to us.  Don't know if there is anything like home visits/support available privately.

I have a feeling that my daughter would be the same about the police i.e. it wouldn't have much of an effect; our therapist read her the riot act early on about hitting out, and she was really worried and scared by it.  It's not under her control, and she's always upset and apologetic afterwards.

Thanks to all,

Caroline
mid73

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Reply with quote  #152 
Meal support in the home sounds great if you can access it. I think that would have helped us. I think it’s actually a good sign that she is able to apologise afterwards. My d was never able to voice that.
tina72

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Reply with quote  #153 
Hi mulberry,
it might be that she counts calories and justs stopps by reaching some number in her mind that she cannot get over. This was the case with my d at the beginning.
Can you say which meals/snacks you do struggle with? Is it always the same time (for example afternoon snack and dinner) or is it changing?
Tories idea of waking her up very early with a smoothie in your hand is worth a try. I experienced, too, that ED was weak in the mornings and very strong in the evenings. The second thing is, you could have a high caloric start in the morning with that which takes a bit stress out for the rest of the day.
Think about what you do when she refuses to eat. Are you going downstairs again? Are you leaving her room? You say you dont give her a choice and that you can´t force her to eat. That is true, but do you really wait beside her bed with the food in your hand and tried to spoonfeed her? In the beginning the feeding often takes hours. Some here felt they fed 24 hours a day. After a meal was before the next snack. It is hard and it takes soooo much time and it is very exhausting.
So think about how you react when she refuses to eat and wether you really don´t give her a choice.
Another question: Why is she too stressed to eat with her dad? Is it possible that she feels that he is stronger and will not accept refusing to eat? If he knows that he has to stay calm and compassionate, isn´t it worth a try to see if he gets her to eat? We changed places a lot at the beginning; if my d refused to eat with me, hubby took over and so on. So she saw that not eating is not possible and someone will be there to require her to eat anyway.
Sorry that it is so hard for you at the moment. Two months in you should see some light at the end of the tunnel.
Try to change something, maybe that would bring you more progress.
Tina72
tina72

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Reply with quote  #154 
Another idea:
Eva Musby is doing skype sessions, maybe it is woth a try to have her coming around online during a meal to see what she suggests?
Tina72
tina72

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Reply with quote  #155 
And please keep in mind that this forum is public. Just for the case that you don´t want to use real names.
Tina72
tammy

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Reply with quote  #156 
I think Tina72s idea is great. I was just about to mention the amazing support we go from Eva. We did some role play and it really helped us. She is a very calming and reassuring presence and it really helped us with our compassion.
Tammy
mulberry

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Reply with quote  #157 
Tina72, thanks very much for your replies - I had wondered about getting in touch with Eva, that sounds like a good idea.

On the other topics, it's not at all predictable which meals will go badly, there isn't really a pattern to it, or a certain time of day that is difficult.  It changes, although we are having a run of difficult breakfasts this week. 

I'm not sure if she is actually adding calories up consciously, but I do think she has some sort of internal sense of it and the brakes come on.  I have tried sitting by her bed with food, but it generally ends in total shut down, clamped mouth and /or screaming, and quite often kicking out at me.  I haven't managed to get her to eat during any of these episodes.

And yes, I was thinking that any change we make probably couldn't make it worse, and that we need to change something, so getting my husband to eat with her, or do shifts with me is one of the next plans.  I am starting to get very depressed a lot of the time, and I know this won't help my daughter, and adds to the guilt of not being able to make any headway. But, I can't just "snap out of it".

Thanks to all!
Torie

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Reply with quote  #158 

Quote:
Originally Posted by mulberry
And yes, I was thinking that any change we make probably couldn't make it worse, and that we need to change something, so getting my husband to eat with her, or do shifts with me is one of the next plans.  


I wonder what would happen if you said something like, "Here's your meal; if I can't help you well enough so that you can eat this, your dad will have to try and see if he can do a better job helping."  Maybe that would push her into eating, or maybe, as Tina said, her dad would have a way of being tough on ED that would work.  At a minimum, it would take the weight off your shoulders for at least that one meal.

Quote:
Originally Posted by mulberry
I am starting to get very depressed a lot of the time, and I know this won't help my daughter, and adds to the guilt of not being able to make any headway. But, I can't just "snap out of it".


Oh my gosh, it is so exhausting, depressing, and all around awful!  Please be sure to take care of yourself as best you can, and remember that feeling guilty does't help your d, doesn't help you, doesn't help anyone other than ED and the last thing you want to do is help ED.  So try to push the guilt away - this really isn't your fault! xx

-Torie


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

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Reply with quote  #159 
Hi Mulberry, I am sorry to know that you are feeling depressed and can't just 'snap out of it'. I have been there. And you are right that it's not helpful for your situation. The forum is great for support but i sometimes need face-to-face support. Here are some ideas:

Get a therapist for yourself -- someone who knows about Eating Disorders would be a plus

NAMI (National Alliance on Mental Illness - https://www.nami.org/) has support groups for carers and there are local chapters by state. They are not 'eating disorder' carer support groups, but there are carers who are dealing with all sorts of mental illnesses so there is commonality and understanding. 

Al Anon - I dived head first into support through Al Anon because my D has had substance abuse issues. It's a loving group, and I have found people there who have recovered from ED, or who know of someone with an ED, so it's been very supportive and positive. It has given me strength.

Also Feast-ed founder/member, Laura Collins Lyster Mensh does support phone calls for parents, she just asks for a small donation. My H and I did one with her weeks ago and it was helpful. She even scheduled it in the evening when my H and I could be together. It was very worth it: http://www.circummensam.com/schedule-a-support-phone-call.html   

Best of luck to you and your D and family. XO

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Francie

tina72

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Reply with quote  #160 
Hi mulberry,
how are you doing?
Tina72
mulberry

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Reply with quote  #161 
Hi Tina72

Thanks for your message, I've stayed away for a few days as I needed a break from going over and over things and making myself too anxious to function, and remain calm and consistent.

We have our therapist/psychologist session and weigh-in today, so we have a number of things to discuss with the team about how to move forwards, get extra support etc.  I am certain d will have lost weight, as she has become super dug-in over the last week and I feel things have gone backwards.  It's so strange because a couple of weeks ago, I felt we were turning a corner, she started drinking milkshakes again, but mentally she has slid right down and is trying to restrict more again.  I am trying so hard, but nothing I do seems to make her eat more.  Although, over the weekend on Saturday, I went out for a long walk with a friend, which put me in a better place mentally, and I felt much calmer when faced with d not eating her lunch.  I did get her to eat a bite more omelette; it is better if I am not panicked and upset by the total refusal.  If each bite feels like "life or death" to me (which it is really) it is MUCH harder to stay calm.

The doctor (psychiatrist) spoke to me on the phone on Friday for a long time, and did make me feel supported which was valuable in itself.  She has put d's medication up from the minimum starter dose, it might help with the anxiety. 

thanks to all for support

xx
Torie

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Reply with quote  #162 
Oh dang, it really sucks that recovery is not linear.  Two steps forward and one step back seems to be the rule no matter how hard we try.  Please remember that we all go through that - it's not just the Mulberry household.

Glad you were able to take the nice walk and speak with the psych.  It's so important to take care of yourself as best you can while you're engaged in this awful battle for your d.

Hang in there.  It does get better. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Reply with quote  #163 
Hi mulberry,
"I am trying so hard, but nothing I do seems to make her eat more."
She will not eat more free willingly until very proper WR and additional time x.
Up to then you need to serve more if you want her to eat more. She cannot decide it.

"Although, over the weekend on Saturday, I went out for a long walk with a friend, which put me in a better place mentally, and I felt much calmer when faced with d not eating her lunch."
Great that you had that time with your friend and could stay calm afterwards. What did you do when she didn´t eat her lunch?

How was the appointment?
Tina72
deenl

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Reply with quote  #164 
Hi everyone,

I thought it was about time that I updated. 

There are many things in our ED journey that are going very, very well. The thing I am happiest about is his continuing improvement in the social sphere. When he started back to school he hung around with the same groups as his brothers but over the last few months has moved to a group of his own friends. He has started to see them outside school and they are planning a fantasy game afternoon every two weeks at our place. This style of progress is so absolutely typical of my little introvert; I have seen it all his life. He finds his safe spot, gets to know the lay of the land and slowly but surely in his own time takes step after step out of his comfort zone. Any attempt to impose our timeline backfires by giving attention to the issue and increasing his anxiety. From trial and error over the years, we know that gentle positive reinforcement and casual references to next steps he could take (like letting the club meet here) along with our expectations and confidence that he will find his place/the way are the parenting skills we need to use with him. In our own unique case I am very glad that we do not work with a therapist as I am not confident that they would support our approach and would try to drive the timetable and steps more in accordance with their training and their idea of a 'typical' teen. On the other hand, maybe we could have made progress quicker. Who knows?

I am so very glad that H and I have the confidence to know that we are good enough parents and that we know our kid best. As we all know this is not a state we get to easily. In the early days we questioned and doubted absolutely everything about ourselves, our parenting, the impact of our relationship on the kids, the choices we made about where to live and where to send the kids to school, our inability to see our kid slip into hell right before our eyes, etc. In our confusion we took a step back and allowed the professionals to lead our son's treatment. It didn't go well. We took back the lead and flailed around until we found this forum. I have regrets but not guilt about this period. Regrets because, of course, I wish that my son't path to recovery was as short as possible. No guilt because that learning curve is an essential part of the journey. We parents cannot know the knowledge we need, we do not yet have the skills and even then we need practice and trial and error before we can apply them successfully to our unique family and situation. My lack of guilt is also based on the fact that H and I never gave up searching for the answers. Of course, we also got very lucky with a pediatrician who was totally on our side. A godsend. But even without her we would have found a way to succeed.

It's funny how this illness changes our perspective. ED son has known for a week or two that he would have to give a very short presentation to the class this morning. The odd though about it over the last few days but no work, last night asking around the family if anyone had ideas and eventually got it started, this morning said it wasn't finished and he'd finish it on the way to school or in the classroom during the class announcements. All chill and no panic. I found myself saying how great it was to see him being balanced in his standards to school work and complimenting him on doing something at the last minute that was good enough. In my own head, I was laughing at how different that was from what most parents would say in the same situation. [biggrin]

Anyway, I weighed and measured yer man over the weekend. 1.5 cm growth and no loss of weight in the last month. Happy with that. I would like to bump up the weight as we are just barely keeping up. Unfortunately, H has severe digestive illness so needs a very specific diet which is tricky to manage without being too triggering. We are going with minimising talking/commenting/planning around ED son and constant repitition that this is a very unusual case with special short term requirements. Lots of planning and cooking for me. I am in the process of building my own collection of meal plans and recipies that I can adapt for all the members of the family without too much work.

ED son also has some leftover ED habits, primarily the dreaded 'last bite'. I have really started to crack down on this to the point of being back to scowls and nasty remarks every day. Sigh. But I'm damned if I'm going to leave this cursed illness with even the slightest foothold in my son's brain. I am also slowly but surely passing on knowledge about steps needed to prevent relapse; just a comment here and there to start. We are also able to discuss his illness and recovery in short chats and if a link naturally appears in conversation. For example, his brother was offered an appointment with one of the first professionals we saw. I told the kids about it and asked ED son if he remembered her. Yep (he has forgotten absolutely nothing [frown]) so I laughingly said that they know why I asked for someone else! (Personally, this brought up a whoosh of emotional flashbacks that I hadn't expected and took a few days to calm) We don't need to tiptoe around topics anymore and I feel it is healthy to chat about his history and give it it's appropriate place in our past as a crummy experience but one that in time we will look back on a simply something that happened. I still plate and supervise most meals. Whatever he does not eat at lunch he brings home, openly and honestly. Of course, I have to encourage that honesty in my reaction. Calm, consistent, matter of fact and sometimes no comment. The response is appropriate at this stage in our situation.

As for the rest of us ... When ED son went back to school in September, I had a complete burnout. Obviously, I kept cooking and feeding but not much else. I organised an assessment to confirm what I already knew; that I have ADHD, primarily inattentive. Also one of the other kids. So I have been working with an ADHD coach and taking meds to support me while I get my life back on track. I am clearing the backlog of a house full with stuff, administration years in arrears and self care. I am also continuing to give support to the other two kids who need it at school. Hubbie and I are also paying attention to his poor health and quality of life and looking at where we can improve things, one step at a time. Of course, it is not all perfection. I am making a birthday cake/little party tomorrow for H and eldest son who's birthdays were two weeks ago! Better late, than never. We are also spending much time and emotional energy supporting an extended family member who has been in hospital for the last 7 weeks. So pretty much a normal picture of family life after a severe illness of long duration; trying to get back on track and keep all the balls in the air. God, I can't wait to get stuck in a rut. Sounds boring and wonderful.

Hang in there folks and keep feeding.

Warm wishes,

D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
toothfairy

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Reply with quote  #165 
Hi Deenl,
What a wonderful update (of course I was secretly hoping you would do one[biggrin]).
Wow, Things have changed a lot, he and you have made amazing progress. 
I am 100% sure you took the right path, He seems so much more chilled and happy.
It is truly amazing from where you came from to where you are now.

No shock that you had burnout when he went back to school! I am so glad you are getting help for you.

Enjoy your lovely family and I sure know what you mean about being stuck in a rut...and boring lives....bring it on!
Best wishes and delighted for you all 
x TF



__________________
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  #166 
What a wonderful update! So happy for your son and your family. Take care of yourself.

Kali

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Food=Love
tina72

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Reply with quote  #167 
"It's funny how this illness changes our perspective. ED son has known for a week or two that he would have to give a very short presentation to the class this morning. The odd though about it over the last few days but no work, last night asking around the family if anyone had ideas and eventually got it started, this morning said it wasn't finished and he'd finish it on the way to school or in the classroom during the class announcements. All chill and no panic. I found myself saying how great it was to see him being balanced in his standards to school work and complimenting him on doing something at the last minute that was good enough. In my own head, I was laughing at how different that was from what most parents would say in the same situation. [biggrin]"

Thanks a lot for that update, deenl. It is so good to find hope reading your story.

I experienced the same as you, our perspective on our kids is so different from others.
I had an inner party when she first did not do her homework, when she first finished a test 30 min before ending time and did not correct it over and over until the last minute. When she said yesterday "I think I have learned enough for this test and I will do something else now".

A former friend who´s d is not good at school did not understand why I want my d to learn less and to do something else but homework and that I encouraged her not to learn any more for a test. She thought I was arrogant because my d is gifted. I can understand you totally.

Thanks again for all your help here and for coming back for that update.
I wish you all the best. Take care of yourself.
Send you an enormous hug. It will not need much time from Germany to the Netherlands [biggrin]!
Tina72
Foodsupport_AUS

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Reply with quote  #168 
Thanks for your update. Your son has gone from strength to strength with your help. 

So many of us have changed our expectations for excellence with our children. I have known parents to take months off work to "assist" their children with studying for final exams for school such is the emphasis placed on them. For me it was much more about insisting she took time off for rest, relaxation and socialisation. The marks would be whatever they were. 

__________________
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  #169 
Aw deenl, so glad to read this update!  I think your story is really important for everyone to read because it helps us better appreciate that we each need to find our own way.  And you have done that, in spades -  Three cheers for Team Deenl!  xx

-Torie

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

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Reply with quote  #170 
Thanks for the update! Great to hear things are going well.
__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
eternalhope

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Reply with quote  #171 
Deenl, thank you so much for the update. I follow your story and so appreciate how you share finding your own path. I’m so glad to hear you all are doing well.
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