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ed_newbie

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Reply with quote  #101 
[love] I love to hear this update deenl.  Great job!
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"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

14 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and pushing our way through puberty and rapid growth. 
mjkz

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Reply with quote  #102 
AWESOME!!![thumb][wave]
Kali

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Reply with quote  #103 
Hi Deenl

So happy to hear that your son has made progress and is able to be more flexible about snacks, has gained weight and is going to try to go back to school again!

Warmly,

Kali



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deenl

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Reply with quote  #104 
Hi all,

This thread has ended up being a bit of a diary for me so I will keep posting just so I don't forget how far we've come.

Well, he is hovering in or around WR. I would love to get a bit of a cushion but can't manage it. But I am happy enough that he is keeping pace with his growth. I will always keep pushing and eventually we will get there.

But the BIG NEWS is that he is going back to school. Just a couple of hours 3 days a week but he is in a great mood on the days he goes. He sits beside me in the car, chatting away. Normally he sits in the back glowering.

I drop him in in the afternoon as mornings meals are always the hardest and he comes home on the train with his brother. Mostly I don't give it a thought but it does flash across my mind that this was his chosen method of suicide and in the bad times we had one afternoon of scouring the tracks when he went missing. It crosses my mind but I have no fear. He is good.

There have been a few vital people on our journey; our pediatrician and you guys. But now I can add his mentor. He just gets my S. His mentor has always been fond of him and finds him interesting and his quirks a stimulating challenge. This guy just intuitively knows what to say and do. There are few people I can happily trust with S but with him I can. We also got very lucky with the school attendance inspector. When contacted he was totally aware of our situation, took a hands off approach and just said keep him up to date. Whatever you call the good energy in this world it sure looks out for us at times.

By the looks of it S is starting puberty. His skin is getting a few pimples. Also cool.

Not so cool is that he still only eats at home. I am constantly trying to vary his diet and occasionally he will eat in a different room. Will keep pushing the boundaries there. But that seems to be the way for us. Just miniscule steps forward that eventually add up. Except of course for the month in hospital where we got his basic routine set up. That had to be a big step cause otherwise he would have died. But since then we can poke the beast but not hit it. The ED has of course exaggerated S's own strong sense of self determination and stubbornness. But he didn't lick that off the ground and I'm stronger and wiser and bigger and even more stubborn. Where there's a will, there's a way!

To all those who have supported us, as always, my eternal thanks. To those still in the horrors, stay strong.

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  #105 
Hi Deenl,
I am so happy for you, I have done a big happy dance here for you.
Wow -against all odds, look how far you have come!
I can just picture you in the car,fabulous !!!!!
Deenl, in time he will want to have a freind in or go out & have food...Hopefully being in school will bring him on in that regard...along with the usual food more food & time...
You sure have done your duty deenl,you are an amazing Mum,
Keep us updated,
Xxxxxxxxx

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) 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.
Francie

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Reply with quote  #106 
Hi Deenl,
What wonderful news for your S and you and your family. It is great to hear of your son's progress. Thank you for telling your story. I have often thought of your situation when I have been feeling low about our d's situation. I'm so glad things are on the upswing for you and your dear son. You are an inspiration as you've spelled out a very different way of getting your child to health. You've shown us that it can be scary, that it can take a long time, that you have to be brave and creative, and that you have to keep your eye on the prize. It is encouraging and hopeful to have your example and know of your situation. Thank you, and all best wishes, XO.

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Francie

bryony_1234

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Reply with quote  #107 
Great stories here. Best wishes.
deenl

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Reply with quote  #108 
Thanks for all the kind comments.

I just want to be clear for anyone who has not been following our story from the beginning that I was and still am 100% focused on getting my son fully weight restored and increasing his weight to allow him to catch up on his stunted growth.

I used the methods that worked best for us but had they not worked I would have done ANYTHING to support his FULL recovery. I fought, first for his life, then for a life worth living and now I fight for a life completely free from any trace of the ED. I will not cease until I have achieved that goal.

Keep fighting folks. I know you are all doing the best you can with all the variables of your particular situation.

With warm wishes as always,
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.
sk8r31

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Reply with quote  #109 
It truly is wonderful to see how far your s and family have come!  It is the journey that no family wants to take, and one I would never wish for anyone.  And yet...there is a silver lining for many of us.  Stronger parents...able to advocate for their kids.... and often stronger bonds between parents & kids once the illness is kicked to the curb.

It was my greatest fear that we would lose our beloved d to this illness.  I was willing to tolerate her hatred of me for the rest of her life if she could recover from ED.  I heard over and over again in the early days how I was making her life miserable and was called awful names for insisting on full nutritional rehabilitation.

And now...a close, loving relationship once more....stronger than before ED.

Really cheering for you & family deenl, as you continue to move your s forward to full recovery.  You are a hero parent, who is inspiring others.

Warmly,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
deenl

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Reply with quote  #110 
Hi all,

Just updating my 'diary' so I can document progress.

Jun 17 - We have increased school to 4 days a week. 60-90 mins per day. It's going well. Our beloved (by me anyway [wink]) pediatrician has been head hunted for bigger and better things. But S no longer needs medical monitoring so it's not a disaster at this stage.

He has asked to go to a weekend convention related to one of his hobbies. We said yes, of course. We will be travelling 2 days and have 3 days there. LOTS of challenges. Change of routine, timing of meals, different food, no internet for distraction and more food. H & I will have contingency plans for anything and everything we can think of. We really want this to be a successful trip. It is really an exercise in exposure therapy 'flooding'. We have tried this many times but HE was never on board so few successes. With this being something he REALLY wants to do, we are hoping for progress.

Summer holidays next week so planning to try expanding his boundaries balanced with doing things the other two kids enjoy.

Down side is that we are still stuck food wise. Variety within routine but NOT eating MORE. And he needs to. Considering options. We really need to change this.

Onwards and upwards,

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.
sk8r31

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Reply with quote  #111 
Hi deenl,

Hooray for the progress you've all made!  The upcoming trip seems like a wonderful opportunity to challenge some of the tough ED behaviours.  The fact that this convention is so important for your s will surely help in the push to move past this 'stuck' phase.

Cheering you on from afar, and looking forward to hearing how it all goes.  

With warm support,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
Francie

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Reply with quote  #112 
Congratulations, deenl, so happy for your son's/family/s progress. Your story is inspiring. XO


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Francie

toothfairy

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Reply with quote  #113 
So pleased for your progress Deenl, 
Best of luck at the convention, and I wish you a lovely holiday.
You sure deserve it!!! xxx

__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) 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.
Foodsupport_AUS

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Reply with quote  #114 
Well done. Having goals I think is an enormous motivator for kids to at tackle those things that are holding them back. Early on my D often felt she did not deserve those goals so wouldn't try, but as she has matured and healed it is a great way to work towards things they find difficult, with positive reinforcement for the effort. Best of luck. 
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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  #115 
You rock, deenl!!!   So glad to hear how things are moving along.   Thanks for the update. xx

-Torie

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

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Reply with quote  #116 
I think you guys have come such a long way-that's fantastic tohear about the weight gain and the planned trip.regarding the food choices-and maybe I'm just seeing this through my own lense-your son doesn't maybe have Aspergers?i ask only because his need for set routines and very particular food choices ,his struggle to do things until he is ready...they are all things that my Aspergers boy deals with on a daily basis.
I am fortunate that my boy can deal with unexpected changes ok,but he can be sensitive to things that other people wouldn't notice-noise, crowds...
And the thing about aspies is they don't 'look autistic'.they like hanging with people but can struggle to see others viewpoint.they make some eye contact.and they are smart.as a result they take longer to diagnosis.
Also there is some evidence they can be more prone to eating disorders as their peers change with puberty but they struggle to understand those changes, particularly in other people ,as they aren't 'there ' yet.
My son eats only two different things for breakfast,two different choices for lunch and is more easy going about dinner providing nothing touches-meat,potatos and veges can be on the same plate,but can't touch.
Look,it's just my perceptions and thoughts and if you think it doesn't fit your boy,that's all good.but if you put some of those things through an aspies lense, the picture might look different.
I think I you guys are doing amazingly though and I'm so happy that your difficult journey is getting progressively easier

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Kali

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Reply with quote  #117 
Hi Deenl,

The progress you have made is wonderful and I hope that your trip will be a success and that your son and your family will enjoy it! 

"LOTS of challenges. Change of routine, timing of meals, different food, no internet for distraction and more food."

We try to keep to the same times for meals when traveling, as much as possible. I also let d. know what the schedule for the day is, including both mealtimes, and activities, in the morning. It seems to help if d. knows what to expect.

"Down side is that we are still stuck food wise. Variety within routine but NOT eating MORE. And he needs to. Considering options. We really need to change this."

To get around not eating enough, we tried two things: one was increasing the caloric footprint in the food by adding additional butter, cream, benecalorie, oil, cheese, serving desserts, whatever it took.

The other was that portions were very carefully controlled and I told her when she needed to take more on her plate and I also took the same amount on my plate so that our plates looked identical. 

Hi-calorie snacks can really help increase the amount of food also, chips, juices, cookies, full fat yoghurts, etc. Does he have favorite snacks and if so, can you bring some of them?

Have fun! A change of scene can remind us all of the bigger picture and the other more interesting things in life after we have been living meal by meal for so long. And maybe it can help motivate your son to get well if he sees that there are places to go and fascinating things to try.

Kali



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mjkz

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Reply with quote  #118 
Have fun Deenl and this is a great opportunity to challenge those last ED behaviors.  Flooding is hard but can be very effective.
Mamaroo

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Reply with quote  #119 
Great to hear about your trip. On Monday we're also going away on our trip dince diagnoses. Jotting down all the tips the other poster gave, thanks for those, Kali.

As for eating more, I used to make toasted sandwiches for my D. I looked for the bread with the most kilojoules. Then I buttered both slices on both sides. For fillings I either had cheese and ham or a tin of tuna in oil, mixing the oil into the tuna as well. Toasted the whole lot to disguise the butter.

Also added cream with her milo, instead of just milk. Nuts and seeds also packs a lot of kilojoules with a small footprint.

My D used to struggle with variety and fearfoods. I'd just give her some and tell her to taste it, with no expectation that she needs to finish it. Lo and behold, the plate was clean and I could tick off another fearfood.

Have a great trip!

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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. Challenging fear foods and behaviours now.
deenl

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Reply with quote  #120 
Hi all,

Just a very quick update.

The trip went fantastic. He was able to let loose lots of ED behaviours and enjoy himself.

I had his usual food for the first two days as I though the trip itself was enough challenge. On the third day, well, the food was just gone and he had to eat what we ate, which he did with relish.

Of course, when we got home ED thought it could slip right back into the old routines but we weren't having any of it.

Now he is making progress, I am constantly pushing variety and flexibility. We are on a roll.

Quote:
Originally Posted by Sotired
regarding the food choices-and maybe I'm just seeing this through my own lense-your son doesn't maybe have Aspergers?i ask only because his need for set routines and very particular food choices ,his struggle to do things until he is ready...they are all things that my Aspergers boy deals with on a daily basis.


Sorry, sotired, I meant to reply to you sooner. He and his dad have lots of characteristics that could suggest Aspergers but lots that do not. In my mind the core of Aspergers is the social difficulties. Although, both dad and s are introverts and don't socialise much they have a small circle of very strong 'normal' relationships. They are both highly sensitive but that trait is not restricted to people on the autistic spectrum. Because the initial psychiatrist focused on this, I did a lot of research and I am certain that they do not warrant a diagnosis. I appreciate you using your knowledge to bring up the question as in other circumstances it could really be a lightbulb moment for someone.

Keep on chugging away, folks, one step in front of the other.

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.
Kali

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Reply with quote  #121 
Deenl,

So glad that your trip went well! 

warmly,[smile]

Kali

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Francie

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Reply with quote  #122 
Hi Deenl,
So glad to hear about the successful trip. Your story is an example of what courage, love, trust and patience can do. Congratulations! XO

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Francie

Francie

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Reply with quote  #123 
I like this from Aussieedfamily, it is a good reminder and guideline:

The one really common thing though is that regardless of the approach, method & style of what works the support/love/care/assistance of the family is truly the best medicine.

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Francie

Mamaroo

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Reply with quote  #124 
Thanks for the update, it's great to see things went well,😁
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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. Challenging fear foods and behaviours now.
eternalhope

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Reply with quote  #125 
What a wonderful trip. So happy to hear.
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