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CED123 Show full post »
CED123
Thanks Torie - it does. 
Currently no light; only tunnel 🙁
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deenl
Hi CED,

Like has already been suggested, I used very neutral statements. "It's time for snack". Once he was at the table, he had his iPad for distraction and I said nothing, did nothing.

Obviously, sometimes it didn't work so I had to find something to change things. Figure out some carrot and stick. He hates to be nagged, so that was something I used a couple of times - when he did not come down for a meal, I went up to his room and I told him that I would disturb him every 10 mins until he came down to the table (note - not to the meal or to eat, just to the table). He would come down eventually. Once at the table, he would eat more often than not. Another time he refused to go to the doctor for his physical check up. I liaised with the doctor and she said she would squeeze us in whenever he turned up. So I went to him and told him that I knew he was anxious about the visit but that it was not negotiable and that I had made another appointment for that afternoon and that I would continue to make appointments for each morning and afternoon and nag him each time until he went (the stick). If he went that afternoon, he would not have to think about it for the rest of the week (the carrot).

Another thing that worked when a meal was difficult was if I hid as he was coming to the table. It was sometimes like even the sight or sound of me would trigger resistance. So if I hid behind the door and said nothing, he would eventually sit at the table and after a few minutes of iPad distraction, I could reappear to supervise. In our situation, if I spoke or physically nudged towards eating (like pointing to or handing him cutlery), he would become very resistant. Basically we had to supervise but be as invisible as possible!

After the second time he was IP, we started using a timer - again this is something neutral. He would watch youTube for the first 15 mins (after I / Dad would say the time was half way) in order to soothe his anxiety and then would eat while still watching videos. We would warn him with 5 mins to go in order to maintain momentum. We did not have any consequences for going overtime. Our thinking was to reduce the stress around mealtimes as much as possible. 

Another thing we did was to be careful about our own body language and tone of voice. It was absolutely fake it until you make it. I was so stressed that I needed baths and the massage chair to ease the rocks in my back and shoulder but I totally tried not to show it. It took a while before I eliminated my 'tells'. For example, I realised that I was stomping around even though my tone of voice was calm.

Showing him that we expected him to eat through serving safe foods at EXACTLY the agreed time and following the same rituals (calling him when the meal was on the table, watching you Tube, table in different room and only one parent present, rarely speaking, same crockery and cutlery), only introducing flexibility much later. We also showed that it was expected and normal by having the whole family have 3 snacks at the same time as him. We already ate 3 meals as a family. 

Sometimes a meal did not happen, especially in the first few months. Our son would often feel uncomfortable (I still don't know what the feelings were) or lose the plot and it was quite obvious he did not know how to proceed. So it was up to us to show him by our behaviour that it was not the end of the world (it felt like it esp for my more rigid thinking husband) and we would just move on. We would take the meal away and serve up the next one at the scheduled time and with the expected amount of food. Again, no consequences as that would increase the stress and make it more likely that he would miss a second meal. These were really the meals where it was very, very hard to act in anyway normal but we tried our best.

I'm probably not doing a great job of it but I am trying to figure out my own thought processes at the time. I knew that the standard techniques were not working for us. I thought back to his childhood and even as a toddler standard parenting techniques (naughty step, time out, taking away privileges) didn't work either. They just made him stand his ground even more or we would end up arguing about the consequence rather than the actual issue. I tried to think about what did work previously with parenting and tweak them for dealing with ED. Obviously, things like discussion and logic were not transferrable techniques LOL. But quiet and calm parental expectations did, the telling him that I will nag until he does something worked, guiding him by example and our own behaviours helped(e.g. us apologising or compromising, taught him it was ok to apologise and compromise)

The techniques that worked for us were very subtle and I really really needed to think hard about how we parented him in the past. This was just something we automatically did so it was not easy to recognise or to put into words but it was the key for us.

As usual, I don't expect what worked for us to work for others. And we had so much trial and error to find out what worked. I'm just putting it out there on the off chance it sparks a though that leads to another thought that leads to a little technique that might be one little step in the journey. (when I was feeling pretty hopeless, I would think in tiny steps)

Sending you big hugs,

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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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deenl
I was lying in bed last night still thinking of you! When we (other parents) write about things that worked we are focused on the tips that helped but not on the days where we were clinging on by our fingernails. In our case, our son gained 2kgs in the whole of the first 6 months, gained 1 kg in a whole month in hospital and only a handful of times gained more than 300g in a week. There is a heap of struggle in there before we figured out something that worked. If we had any good options for IP I would have taken it. Going through the day, doing minimal normal things, trying to keep the other kids on any sort of even keel, cooking and serving meals - just those basics took all I had most days and more than I had some days. My husband's main role in that time was going to work to keep income coming in and listening to my phone calls as I tried to psyche myself up for a meal and to me sobbing on the phone when it was all too much. Our route to recovery was 90% just hanging in there, getting whatever food in that we could plus occasional small improvements that only showed how important they were over a long time as the cumulative effect became obvious. Basically I am suggesting that you keep trying to hang in there, grind through each day, accept that this sucks like nothing else in your life and that this is the way your daughter's journey has to play out while mulling over and implementing any tweaks that may help. Much easier said than done, unfortunately.

Wrapping you in a big virtual hug, 

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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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CED123
Thanks @deenl for both messages.  The first has triggered thoughts- I find that even if people may be saying something they have already it always triggers new thoughts. In this case the thought is that we have often dealt with issues with D by stepping back and saying: ok - this is what you need to do, you do it yourself. Then the Q is: is that responding to their nature or creating it? 🙂

Thanks also for the second follow up. This is definitely where I am at:

deenl wrote:
Basically I am suggesting that you keep trying to hang in there, grind through each day, accept that this sucks like nothing else in your life and that this is the way your daughter's journey has to play out while mulling over and implementing any tweaks that may help. Much easier said than done, unfortunately.  


But struggling with the acceptance as you may expect. One of the things I have to find a way to reframe is the thought that we/she are doing it all wrong.  When the guidance on FBT (and on ATDT) is so clearly control/expectation/no wriggle room, I constantly feel like I am failing and responsible for her not getting better. Then it is hard to be sympathetic rather than disappointed we are doing it wrong. So I need to work more on this.

Currently no light; only tunnel 🙁
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deenl
CED123 wrote:
In this case the thought is that we have often dealt with issues with D by stepping back and saying: ok - this is what you need to do, you do it yourself. Then the Q is: is that responding to their nature or creating it? 🙂


LOL! I get ya. I like to think that we are just responsive parents, responding to subtle interactions between our kids characters and ours!

Ok, just brainstorming here. Stepping back has worked in the past but obviously totally stepping back has too many risks in this situation. What's the middle ground? Showing the expectations by providing the meal and bringing it to her/calling her to the table but supervising without the coaching element? Because the coaching does seem to awaken the resistance in your daughter. Can you do less, do it in a different way, sneak a very short phrase like 'take a bite' casually in the middle of a longer sentence, almost like an aside, show by your presence that you are supervising but making it more nonchalant by reading or surfing, doing a crossword or something similar does give the opportunity for neutral conversation (make sure there is no place for her to disappear food into!). I had to do things like that to avoid it turning into a battle of wills, either verbally or silently. It was a balance of my determination - I'm here, I'm supervising, nothing is going to distract me, I have all the time in the world - and avoiding making it look like I was determined - relaxed tone, distraction, humour (using hyperbole or exaggerated accents), de-escalating (Nah, honey, I can't do that, it's in the parenting handbook. Good one, pet. I used to try that with my mum too and it never worked either). All aimed at not triggering that bloody stubborn streak that he has always had but that got maxed out when malnourished.

CED123 wrote:
control/expectation/no wriggle room, I constantly feel like I am failing and responsible for her not getting better.

The way I did this was to look to the core - families know their kids best and must be involved in treatment, full nutrition is the goal of the first step to recovery, we love our kids to bits and are more motivated than anyone else, recovery is possible. Control and no wriggle room, like magic plate, consequences and life starts when you eat, are all techniques. I failed at them big time (I still don't know if it was me. Was I not strong enough? Should I have persisted? Was it him? The teamwork with Dad? The degree of illness? Everything? But who the F cares? I found what worked for us) They are suggested techniques at that. They are suggested because they work well for the majority of people and it makes sense to start with techniques that have the best chance of working. But they do not work for everyone. The techniques that ended up being successful for us were very different. Eventually I recognised that those techniques were not working for us and had to fall back on trial and error and a focus, not on what should work but on what did work. It was bloody hard. I was in touch with parts of the IP professional team even when we came home and I remember multiple meetings where I was begging them to help me with the 'how' but they did not know more than the usual techniques. I really had to figure things out for myself, using here to spark ideas and talking out loud in the direction of my husband! We were very lucky that my brain has developed that skill and all my life's experiences really did lead me to that point. I don't want to put pressure on you but I sense something of the same drive and talent in you. Trust yourself. It took me a long time and shear desperation forced me to learn that lesson when my son did not respond to the standard techniques. You know many of the words and actions that trigger your daughter's increased resistance, what do you have to lose by trying words that are just a little different, for example? Or no words? Just remember the non-negotiables which for me were sufficient nutrition, regular meals and medical monitoring as well as suicide and self harm prevention.

Just remembered another technique we used. I called it the 'drip technique'. I would drop a little idea into a conversation or say one sentence about a change. I would repeat it a few days later and continue on. I suppose it was a form of exposure to insert a new idea or a change in a slow but steady way that did not trigger enormous anxiety and therefore resistance.

I used to also write him email. He could choose to read them at a time he felt stronger. I modified the nagging technique to make sure he read them, although it did not always work.

I also coached his brothers with anxiety and not being vegetarian etc where he could hear. I also explained to the brothers about the illness or praised ED son where he could 'accidently, on purpose' eavesdrop. He did not become defensive or reject the info because it was not directed towards him.

Remember to look after yourself - lots of good thinking to be done on a soothing walk, in the shower or bath. I had a notebook beside the bed for the ideas that would drift across my mind. I also took meds and found funny movies to laugh at because otherwise I would have totally cracked. I did whatever it took. Needs must when the devil drives. 

Mind you,

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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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CED123
yes, at the moment I supervise meals (which are at set times) by just sitting there. I only speak when spoken to pretty much as she doesn't want to talk mostly. I would make a great Victoria child! so I eat mine and then read a book on my phone or play a game. I'm also still dishing up her original meal plan foods even though she is making a different version. (H eats the sandwich the next day). although I don't know how long I will do that. She had gone to the shop herself to get her other food as I refused ot get it for her, on the basis that I wasn't going to enable her cutting her plan, but I don't think that is sustainable either.

I have also emailed the team to say they need to set goals for her.  and did just manage to have a short conversation with D about how she needs to understand what she needs to do and work out how to do it. and maybe she could think about separate parts of her original plan (such as the milk). so doing your drip of ideas.

non-negotiables I haven't managed to set but have just added that suggestion to my email to the team.
Currently no light; only tunnel 🙁
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deenl
You're on the ball. That sort of consistant pressure on both your daughter and the team stops complacency. You have set good and fair boundaries for your daughter. She may not always follow them but you are showing your expectations and she would be in a worse place without them. 

Hang in there
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
Quote
melstevUK
CED123,

You are not failing at FBT.  FBT is successful when the therapists are giving the message loud and clear about following parental decisions around food and eating to the patient. It is not refeeding by the parent or parents with no backup from the team. 

It sounds as if your d needs to hear loud and clear from the team about the importance of falling her meal plan and needing more weight gain. 
Can you speak to her team and ensured that someone gives her this message before her transfer to the outpatient team?
At present you are fighting this battle on your own and you need the voice of the team involved to help you get into the driving seat again in terms of your D's eating. 
You are doing a great job. Don't doubt it. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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CED123
Hi @melstevUK all of the team have been pushing that message for weeks but she is not capable of listening to it. 
Currently no light; only tunnel 🙁
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melstevUK
Hi again,
I keep thinking about your situation. Your d is determined to lose weight again. I wonder if it is worth asking what the target weight she has for herself in her mind. I am sure she will have a number in mind. If she can open up about this, maybe someone from the team can talk to her about the danger of slipping back and how this is going to delay her long term recovery. 
Getting as many things out into the open as possible is always worth doing because secrecy is such a big part of the illness..

By asking you are not giving your agreement. You are just exploring what she is thinking.
Believe you can and you're halfway there.
Theodore Roosevelt.
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MKR
Thinking of you and your daughter 🌞🌞.

A new opportunity, a new way forward. 

I trust you have a good plan how to fill the time between meals/ snacks, when the anxiety is likely to build up. The motivation will gradually grow with every little success! Little steps, ratcheting out into the sunshine. 

All the best,
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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KLB
I really understand that feeling of failure. I have been in that mindset so many times and it’s so hard to drag yourself out of it. We’re another family who can count on one hand the weeks our kid has gained more than 300g. We’re approaching the 2 year mark and still not weight restored, still a huge fear food list, still struggling with balancing exercise for motivation and mental health vs not burning too many calories. I read posts on here where kids are weight restored within a few months and I wonder why I can’t seem to get my son there. It’s taken me a long time to accept that we’re just not one of those families where weight restoration seems to happen so quickly. I’m sorry I don’t have anything useful to say to help you in a practical sense. I just wanted you to know you aren’t alone in that feeling. 
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melstevUK
KLM,

I am so sorry for what you are going through. I believe that when weight stalls, patients should be given IP treatment for a few weeks just to get them on track and get their meal plan back up.  It is not an approach which is used. Hospitalisations are generally left until patients are at death's door and it is a big failure of the system in the UK. 
However, there is nothing to stop you from asking for this from the consultant psychiatrist. If you can get your son to accept going IP for three to four weeks, they may agree. Unlikely at the present moment because of Covid-19, but don't hesitate to ask at a later stage. Noone should be left to flounder around like this. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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CED123

Well stepping back and dripping ideas has had some effect. she has decided she wants to go to sixth form and needs to get back on plan. So is going back to the plan breakfast (real milk not almond!!) and will work on lunch. Which is excellent of course and i am trying very hard to not think about the parts that still aren't happening (her idea of the milk is still a little low for example, and she has started leaving some rice at dinner) and to not keep pushing but give her a few days. Must separate the validation conversations from the pushing conversations I've decided.


@melstev - i have asked but she didn't answer. But in conversation she has started to be more open about what she had cut calories to in the last few days and that it made her feel tired and hungry. 

@KLB - i know. Every bite that they don't eat feels like a failure still! I followed melstevs advice to get D her IP place, which was meant to be a few weeks originally. the CP even offered to come in over xmas to do the discharge! D says now that she didn't think she would have to put on weight and it was when she realised that, that it all went downhill. 

Currently no light; only tunnel 🙁
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melstevUK
Wow CED123,
That is a huge breakthrough! Firstly being more open about her behaviours, but more importantly she is noticing the effect that not eating enough is having.  And she seems to have made the connection between needing to eat enough to be able to get in with her life. 

It does not mean that it will be all plain sailing from now, but it feels very much as if you have turned a corner. Really happy for you. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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MKR
CED123 wrote:
she has decided she wants to go to sixth form and needs to get back on plan... Must separate the validation conversations from the pushing conversations I've decided.


Yay for the sixth form!!  There is strength and ability and most importantly - will!  A bright light shining into the tunnel. A great conversation topic when she is ready to talk during meals, taking the focus away from food.

melstevUK wrote:
Wow CED123,
That is a huge breakthrough! Firstly being more open about her behaviours, but more importantly she is noticing the effect that not eating enough is having.  And she seems to have made the connection between needing to eat enough to be able to get in with her life. 


I agree. Some of us are still waiting for the awareness to show. Your daughter is ahead of mine, I believe this is a very positive sign.

Keep going 🌞!
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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