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toothfairy

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Reply with quote  #126 
Deenl, yay for poker face & mac & cheese. Xx
Delighted about the holiday...gosh the progress in 1.5 years,considering how sick he was is amazing , huge congratulations to you all xx

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Torie

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Reply with quote  #127 
Hi Deenl - So glad to read this positive update!  We just returned from our first family vacation in ages so I've been offline for 10 days.  So nice to come back to your good news!  xx

-Torie

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mjkz

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Reply with quote  #128 
All I can say is awesome for you and your family.  So glad he asked and you were able to make it work.  Lots of hard work on everybody's part!!!  Nothing in life that is worth much doesn't take work.
Sotired

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Reply with quote  #129 
Awesome to hear about the trip going so well deenl.walt Disney (for all his faults) had a mantra that I use all the time in my head "keep moving forward"it sounds like that's your mantra too!
In terms of the aspie thing,it was just a thought.aspies do have friends though,usually a small core group some who will present with challenges of their own-ADHD,dysparaxia and autism,but they take a long time to diagnose because when your child is high functioning it presents so differently to the "accepted" perception.i found even the books didn't always help,though some things on YouTube did.
We are all on the spectrum,it's whether or not the behaviours hold us back.
Anyway,all that aside,I'm loving hearing of your progress for your son,onwards and upwards eh!

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deenl

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Reply with quote  #130 
Hi everyone,

Just wanted to share our happy news.

This week our son went back to school full time for the first time in 2 year. He is happy and relaxed. I don't want to jinx things but he seems to be eating fine in there.

I sent him back without any strict arrangement around snacks and lunch. 

- he won't talk about his internal picture
- he knows our expectations were that he goes back to school full time
- I told him I expected him to eat his snacks and lunches
- a different day, I told him to bring home whatever he didn't eat. No blame, no shame.
- no gym for this year per my request
- his brother and mentor are keeping a subtle eye on whether he eats or not
- I will weigh more frequently during this transition phase
- he has been eating 3 meals/3 snacks at home almost without fail for 18 months (more sporadically in the 6 months before that) The eating habit is strong.
- my husband and I are keeping an eye out for any of those nuanced signs that mean mental health is slipping

So that's where we are at and so far, so good.

Thanks, as always, for your support and time over the years everyone. We couldn't have done it without you guys.

Warm wishes,
D

This would not work and should not work for everyone but for us a calm, supportive environment was necessary for mental and emotional recovery. Combining school and recovery was completely overwhelming for him. I feel that his recovery is stronger and more solid for not having been pushed back to school before he was ready.

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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.
tina72

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Reply with quote  #131 
Hi deenl,
send you a hug and [thumb]! Hope that everything will be fine. Going back to school helps a lot to get into a normal life again.
Tina72
Torie

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Reply with quote  #132 
Yay for Team Deenl!!!

So glad to read your happy news!  Thanks for sharing.

You rock!!!  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  #133 
Congratulations, Deenl! What wonderful news for your and your family. I am so happy for you and grateful for you that you have shared your story about how to get through it. You have given me hope. Best wishes! XO
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mjkz

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Reply with quote  #134 
Deenl, you and your family are amazing.  I'm so happy to read this.  You have been through hell and back but you found a way against what seemed like overwhelming odds.  Amazing.  I hope you post in the recovery story thread soon!!! [biggrin]
toothfairy

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Reply with quote  #135 
Hi Deenl,
How is your Son doing ,  How is school?
x

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deenl

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Reply with quote  #136 
Hi toothfairy,

Thanks for thinking of us.

It's going GREAT. [thumb] Seeing all three kids cycle off to school, happy and normal, hasn't gotten old. I watch from the living room window with a tear in my eye and shear joy and thankfulness in my heart. Sounds sappy but it is the most precious moment - every morning still.

Still having to tweak the tail of the tiger to eliminate the last of the symptoms but we'll get there.

Sounds like things are going well in your house too. So very glad for you all. Your mom's instincts were spot on.

Warm wishes,
D

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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  #137 
Ah Deenl, 

That's just fabulous news, brought tears to my eyes too.
I am just so so happy for you and your family, its just amazing. You have given your kid the gift of recovery against all the odds.
You are an absolute inspiration to us all.


Thank you Deenl, Yes, Things are great here. My S is at a great weight for him, and going up with growth, and functions like a "regular teen" wink, wink, lol.....
He did his Junior cert state exam ,and he was happy with the results, very relaxed about everything. 
He is in transition year at school , he has a girlfriend, he is full of fun and plans, and has his work experience set up for a great company in the city for  6 weeks of TY. He is thrilled.

He will eat anything that's put in front of him without anxiety, and can choose wisely when out, go for pizza,burger,wings etc .

He will even go to the supermarket on occasion with his classmates and grab a few sausage rolls instead of the "tuna sandwich" for his lunch, all no problem.


He understands that it is imperative that he does not miss a meal or snack, and is fully compliant.
If he has been out he will discuss what he had, and that " there was no desert at her house" or whatever he needs.

His emotions are back and normal ( as normal is !) , his rigid thinking is flexible, and he will hug me and "teen argue" with me , and we are crazy about each other.
Needless to say, I still keep a close eye "from the sidelines".

His eating disorder is now considered "sub clinical" by the team, he is only seen now once every 3 months, and we are hopefully heading for discharge, planned for April 2018, with a relapse prevention plan.

Remember where we both were 2 years ago..... I remember dreading Christmas, actually dreading everything, terrified..

This year we will be so looking forward to it!!!

I just need to heal myself now from the trauma!!

Recovery is possible and amazing, Delighted for you!
Much love xxxxxxxxx

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Food is the medicine. Recovery is possible.
mjkz

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Reply with quote  #138 
So glad to hear that things are going so well in the Deenl and TF household!!!  Brings a tear to my eye too.
Torie

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Reply with quote  #139 
Tears here, too.  So very glad to read how well your boys are doing!!! xx

-Torie

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

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Reply with quote  #140 
Thanks so much, couldn't have happened for us without all you guys  on ATDT XXX.....


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Food is the medicine. Recovery is possible.
deenl

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Reply with quote  #141 
ditto
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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.
K63

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Reply with quote  #142 
Hi Deeni & Toothfairy , it's so good to read such positive posts and gives everyone hope. Well done to ye both and ye re children / adults . Ye have done an amazing job. remember to take care of yere selves now .
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
deenl

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Reply with quote  #143 
Hi K63. Love the accent. Yeh'll make me homesick [wink]
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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.
EC_Mom

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Reply with quote  #144 
FYI I did EMDR therapy for PTSD after d was back to mostly normal. Seemed to help with all the post-recovery symptoms I developed (waking up terrified, anxious, unable to sleep, fearful).
toothfairy

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Reply with quote  #145 
Thanks K63,
EC_Mom , I will look into that! thanks

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mulberry

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Reply with quote  #146 
Hello to all,

I am really struggling with my D (12) who was diagnosed with AN in mid December.  We have been doing FBT with an NHS clinic in the UK.  She initially lost another 1.5+ kg (she's about 38.6 now) and has been bouncing along at just under 39kg for about 4/5 weeks, with a very slow downward trend over that time.  She is on 10mg of Fluoxetine (about 3 weeks into it) for pre-existing anxiety and depression.

She eats well sometimes, and other times, not at all.  We never manage all 3 meals and 3 snacks in a day, the best is probably 4/5, but this is unusual.  More commonly, we manage 3 meals or snacks.  She seems to have some sort of automatic cut off in her head.

Nothing that I do can make her come to the table and eat if she can't/is in a bad frame of mind.  She just curls up in bed, says no, shouts no, and if I stay in the room saying things like "it's dinner time now" "come downstairs" she starts to get angry and will eventuallly tip over into throwing things at me or hitting me.  I just freeze as I cannot think of anything to say that will help her come and eat.  Eventually I start trying to be logical with her (yes, I know it's a waste of time but it doesn't stop me..) and explain that we want her to get well, and she'll end up in hospital, which she then says I am threatening her.  She is exceptionally good at arguing her point, and reminding me of everything the therapist suggested might not be helpful e.g. talking about going to hospital.

Basically, the more I push, the less likely she is to eat.  She is too stressed by eating with her dad, so it is currently all on me to find the right approach/words.

We had to go and do a snack at the clinic with our therapist, and of course, my daughter was so wound up and stressed by the prospect of this she ate no lunch before hand and very little dinner afterwards.  She ate the snack without a problem. 

I really don't know how to move her forwards, I am angry and frightened that weeks are drifting by while I experiment on her; having been encouraged to push her a bit more, it just seems to backfire.

Does anyone have any experience from the UK about getting higher level of support (day care, IP in an ED unit) using the criteria that outpatient care has not succeeded.  Or, any suggestions for getting any private ED support with meals?  (I am off sick from work, but can probably manage this for another 3 months, then I'm looking at losing my job which we can't afford to happen.)

Thanks for any advice about moving forwards (but please don't tell me that I have to require her to eat, or that she just has to eat, or to give her no choice, or that she's not getting enough to eat.  I know all this, and expect her to eat, I don't give her a choice, but I can't force her to eat. I have no leverage whatsoever.)

Sorry for long rambling post..

Caroline






EC_Mom

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Reply with quote  #147 
Mulberry, so sorry for what you are going through. Unfortunately it is standard for parents of ED kids. 

And indeed arguing and explaining are of no use. ED is totally irrational. You need some kind of steely resolve that eating will happen, and it is also great if you can find some VERY immediate leverage (like going somewhere fun, playing with a puppy, looking at possible online purchases). Plus some distraction in the moment.

I spoon-fed my d, in her bed, against sometimes-violent resistance, for weeks. Bring the food to her if she won't go to the food. If she throws it, be sure to have plenty left so that you can serve up another plate, immediately, without missing a beat. If she gets violent, consider calling the police. I was in touch with local police to explain our situation, and telling my d that I had made that contact meant that when I stepped toward the phone and said, "Now I'm calling the police," she stopped. And she seemed relieved that I wouldn't let her get so out of control.

This refeeding is not for the faint of heart and requires radical rethinking of what you are willing to do. But you are focused and motivated, and you have us behind you. You can do it. We are cheering for you.
Foodsupport_AUS

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Reply with quote  #148 
2 months is a long time without progress. You are doing well hanging in there, but I can see why you are struggling. Has your therapist yet offered any options for further or other treatment. 

As you have found, negotiating unfortunately is a dead end. ED is an extremely skilled negotiator and you often feel you are going around in circles. 

There have been some parents in the UK who have done some group programs for FBT. These have been really useful for some where you can learn some tips and tricks from other families to work out the best way forward. It sounds as though you are just on the edge of success and have to find just that right ingredient to start moving her forward. Keep up the battle. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Torie

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Reply with quote  #149 
Hi Mulberry,  So sorry for all the difficulty.  It's great that you are keeping on keeping on, battling the beast.  One thing that helped me a lot was this video by forum member Eva Musby:



Another idea that might be worth a try is to wake her up at least an hour before her real wake-up time, with smoothie in hand, "Here, drink this."  Some here have reported that ED seems to still be groggy and unable to put up as much of a fight as usual.  If it works, it gets the day off to a great start.

Hang in there.  And remember that we're with you in spirit. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
mid73

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Reply with quote  #150 
Hi
Your situation sounds similar th the one I experienced with my daughter,,14 at diagnosis. I did manage to get her to eat 3 meals and 2 snacks but as the amount needed to gain weight increased she became violent repeatedly throwing food punching me kicking me., I did call the police, Unfortunately the police could not attend in the heat of the moment ( too overstretched). They did call by later. It made no difference to her behaviour though she could not control it. I had a frank discission with our ever supportive cAMHS therapist and the psychiatrist. Risperidone was tried and initially calmed things however things got worse as she then started to purge. At this point CAMHS looked for an IP bed, we got one this turned things around.

Our d loathed FBT sessions at CAMHS, I know this is not unusual. With hindsight I think it would have been better if we had seen the therapist without her as she just felt the whole thing was about telling her off and she was always worse for days after her appointment. It may be worth seeing if you can make an appointment on your own. Make it clear that you are concerned that you are not making headway and that you cannot standby and watch her deteriorate.

IP does by no means fix everything but for us it was a game changer. A year after discharge my daughter whilst maintaining a physically healthy BMI of around 20 is still not totally out of the woods but is gradually improving. The things that keep her eating on bad days are removal of phone and gadgets, not being able to go out with friends. They are our leverage .

Hope things start to improve for you soon.

Best wishes





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