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teecee

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Reply with quote  #26 
KLB lovely to hear that you are most definitely moving forward. So pleased he is responding to some things and so hope that that improves to include responding to you again soon. Keep the faith. Xxx
Ronson

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Reply with quote  #27 
KLB - so pleased to hear from you and hear that things are moving forward - I think the kg a week weight gain sounds the right thing and hopefully as the weight goes on there will be more improvement. Have been thinking of you often x
Torie

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Reply with quote  #28 
Quote:
Originally Posted by KLB
So, overall I'd say progress is kind of stagnant but we've stopped going backwards I think.


KLB, From my vantage point, it looks like HUGE progress.  The nutrition is going in every day and has now been increased; the medical team sounds sensible and effective; he ate with his female friend; the exercise has mostly been stopped (I think?); (most important) instead of losing weight, he is now gaining.

I don't want to minimize how difficult it is for everyone involved, but really, you haven't "just" stopped going backwards, and are now making progress toward health.

Thanks so much for taking the time to let us know.  Please remember that we are 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 
scaredmom

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Reply with quote  #29 
Quote:
Originally Posted by KLB
We opted not to go for the bridle and he's still pulled it out a few times but it has reduced. If he pulls it out he gets 30 minutes to eat the next meal or it goes back in so he can be fed. Most of the time the struggle to eat by himself is too much to overcome the anxiety / agitation of having the tube put back in so in it goes. We're doing round the clock shifts at the hospital because they don't have enough staff for 1:1 nursing and he needs to be watched pretty much all the time to stop him exercising. We keep a log of what and how much he does for the dietician and she's added extra calories a few times to make up for it, which he absolutely hated. Had to be restrained to get that feed into him. Wasn't nice to see but I know he needs it. And it's showing the ED who's boss I guess.


You have a really good plan and you are moving forward. It must be exhausting taking shifts watching him. I hope that gets better with more weight. Keeping the log of what he is doing is brilliant!!  You are really on top of Ed. And I feel for you, so much, about seeing him in that position, with restraints etc.  and it is really what he needs right now. It has to be extreme measures for an extreme illness. 

You and your team are doing great! 
All the best,
XXX

hopenz

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Reply with quote  #30 
Thank you for taking the time to update us, KLB.  I agree with Torie, this looks like major progress.  I get a real sense from your posts of your stoic determination and deep love for your son.  

I too stayed with my d around the clock for several weeks while she was in hospital and I understand what a toll that takes.  You've got this.  At some point in the not-too-distant future, you'll be able to look back on these dark days and see how far you've all come.

Warmly
Hope
Kali

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Reply with quote  #31 
Hi KLB,

It is good to hear that your son is in a safe place, that there is nutrition going in, and that he is being supervised so that the exercise compulsion can be addressed.

You are doing hero parenting. Sending you virtual hugs.

warmly,

Kali

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Mamaroo

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Reply with quote  #32 
Quote:
Originally Posted by KLB
The only time we didn't have to feed via the ng is when his best friend and (we think) on-off girlfriend visited. She burst into tears when she saw him and ran away. I think he ate with her when she came back to make her feel better. Almost makes me want her to visit 6 times a day but I know she found it hard to see him like that. His best friend did too. I'm just thankful he still has other people that care and haven't forgotten him.



When my d was having only Ensures, the only time she would eat food was when she was with friends. I made sure to invite them over regularly.  You can tell her how wonderful her visit was, maybe after the initial shock she might want to come back to visit (and eat) again.

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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 months on Ensures alone, followed by swap over with food at a snails pace. WR after a year 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.
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