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aloha

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Reply with quote  #26 
Hi t.f and all.
I not been on because of illness
I'm ireland attending camhs but must go further we have prvate insurance.
Need to up the anti or she never be free of this curse.
Still standing won't back down
mjkz

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Reply with quote  #27 
Quote:
Still standing won't back down


How does she sit in school?  What kinds of things are you using to help her sit and what reactions are you getting?
aloha

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Reply with quote  #28 
Sorry all thank for replies this far
Very sick with gastritis possibly stress
She will sit for school and I have insisted but only little break through
She will shout and say no way will I eat so if that's what you want.
Camh have limited appointment dates now so very much on my own.
Made appt with Dr for next Mon as they want a weight which is same as had been I know by looking at her daily.
Dreading Christmas isn't that a fright
A.
mjkz

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Reply with quote  #29 
Quote:
She will sit for school and I have insisted but only little break through
She will shout and say no way will I eat so if that's what you want.


So what leverage do you have? Does she have a phone?  Does she use the internet?  With my daughter, I would give her three warnings, give her the supplement and if she refused, then she would lose her phone until she either took the supplement or sat down.  Does she want to be in the same room as you are?  My daughter would try to stand in the corner to watch TV.  She could either sit and watch TV or go stand in her room but I was not going to sit in the same room as she was standing.  My daughter loves music.  If she sat, she could listen to her ipod or use the computer.  If she chose to stand, she used neither.

Maybe you can get your GP to tell her that she has to sit at home just like at school.  Maybe her teacher or whoever gets her to sit while at school needs to tell her that she needs to sit at home. What makes sitting at school doable?  Then apply that to home.

It is hard and it takes effort and can be mind numbing at times. I remember one night when I put a chair behind my daughter and sat her down.  We did that number for hours until she could stay sitting.  We set time limits.  If she could sit for 15 minutes, she could walk for a minute or so. It is finding things that make sitting less painful than standing sometimes literally.  My daughter exercised so much she got a stress fracture in her foot.
AUSSIEedfamily

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Reply with quote  #30 
Dear aloha,

Have you considered whether this standing needs a higher level of intervention such as an inpatient stay where the clinicians can work on this?

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aloha

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Reply with quote  #31 

thanks MJK aussiefamily and all whom have replied,
i will try again today with all the suggestions... it is mind numbing and i feel i am causing a huge row, whereby she will flatly refuse her food and as a result H will say that really worked!

we are struggling!!

and sometimes i feel  i am under water with a straw here, still dreading christmas for all the family.

in-patient care will be an option if no weight gain next week thereby the thoughts wont shift.
thank you all for your advice.

A.

mjkz

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Reply with quote  #32 
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and as a result H will say that really worked!


So what ideas does he have to offer in this situation?? [wink]  Sometimes I wonder if doing it on my own was so bad when I hear things like that [biggrin]

If she refuses to eat, then she refuses to participate in life.  No school, no reading, no TV, no phone, no internet. Everything happens after she sits down and eats.  I'm sorry Christmas break is looking so bleak but I'm glad inpatient may be an option.  It might be exactly what you need to break the standing habit and refusing to eat.
ed_newbie

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Reply with quote  #33 
Hello aloha,

I can feel your pain and frustration, and I know it is so hard. It does take a toll on us caregivers, and double the hardship when support from family isn't there.  I am so sorry you are dealing with this. But I can also say from experience that if you can find that last bit of strength in you to really fight this with everything you have, it will be so worth it.  The quicker you can get the weight on and keep it on the sooner you can move past this awful stage of the illness.  

Supervise all meals and snacks.  No loopholes.  Social plans delayed or cancelled if full nutrition doesn't go in and stay in.  

To address the standing, you might try a compassionate approach to see how she reacts.  Offer to give her a foot rub or a back massage, draw her a warm bath or just cuddle together and listen to music or talk about things on her mind without passing judgement. Acknowledge how hard it is for her to relax.  Explain that you are there to help her quiet that voice in her head that's shouting at her to keep moving and that you will be there to help her through the worst of it.  

Know that if she sees you falling apart, she could lose hope.  Fake it if you must, but try to show her that you are stronger than this illness at every turn even if you think you're not.  She needs your help to beat this.  Take a few minutes each day to meditate, pray, whatever will re-set your mental state so you can keep going.  



 

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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. 
aloha

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Reply with quote  #34 
Sorry not on the forum.
Lost weight talk of i.p again
I feel lost but will do my level best to fight the disorder with every ounce of willpower I have.
No more plans now until all food goes in. The mealplan was abandoned at school "no time " to eat it
Still standing but i have resigned until the weight is up that will not stop. Thank once again for your helpful advice. I'll keep going

A. X
K63

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Reply with quote  #35 
Hi Aloha, sorry to hear it's still so hard, and your d is being so tormented by this illness. Keep fighting and trying to get nutrition in. My d was like this I tried my absolute best to refeed at home but we couldn't get there. We had to send her ip It's so difficult to watch this illness change our children , fight for admission if she doesn't gain weight it's the most important to nourish her body and brain and slowly recovery will begin. We were wt this place we have a long journey left but we are in a better place now the standing and walking around stopped with weight gain and time. Try to get self care too it's important . Thinking of you sending you warm wishes.
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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. 
aloha

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Reply with quote  #36 
Referral for I.p waiting to hear.
Thanks for your support
I'm suffering stress related illnesses which is not helping.
I appreciate your long posts and time I really do .

A x
mjkz

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Reply with quote  #37 
Quote:
Referral for I.p waiting to hear.


Good luck aloha.  I hope you get a bed and they can break the standing habit!!!
aloha

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Reply with quote  #38 
Thanks t.fairy
Will enquire about Dublin
She not making headway at all
more or less stuck and friction at every turn when told to sit etc.
Heart broken for so long now regards
aloha x
AUSSIEedfamily

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Reply with quote  #39 

Dear aloha,

I hope the new therapists mantra and beliefs are "Food is the Medicine of & for recovery" with your D at just 40 kilos I would suggest she is still within the starvation syndrome range and when a person is experiencing the starvation syndrome not even the best therapists in the world will have success. A starved brain is very similar to any physically acquired brain injury a brain injury creates mental impairment. Fortunately unlike other brain injury there is a treatment which provides full recovery and the only treatment is food to restore the brain to normal health so that the therapy will work.

Starved brains have huge difficulty handling any mental health therapy & even psycho therapeutic drugs either dont work or have minimal benefit on a starved brain.

Toothfairy has provide good info & she has educated her team to recognise that food is medicine and that an prescriptive number for weight is not helpful.


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toothfairy

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Reply with quote  #40 
Aloha, Hi!
I saw your post on somebody else's thread today and am delighted your D went to hospital for 7 weeks, I hope things have improved.
I see that you are just  2 years into treatment.I note that your D is still ot WR.

Honestly Aloha,the sooner you get her weight right up the PROPER WEIGHT RESTORATION AMOUNT, then the quicker you will all get your lives back. This is the first step. Full and proper WR.
Please watch this video, it explains a lot.



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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.
aloha

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Reply with quote  #41 
Thanks tf.
she not out of the woods another 3or4 kgswould prob make big difference
weight very slow we doingall humanly possible she is eating everything at home but school lunch now difficult ti police .... I am.so fed up 😢
Thanks video very good
toothfairy

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Reply with quote  #42 
Hi aloha,
Would you consider taking her out of school or meeting her at lunchtime?
This could help as leverage or motivation to help push her into recovery?
If my kid could not eat lunch at school, I would not allow him to go, or just let him go for half days.
It really helped him to get better.
Best wishes,
TF

__________________
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.
aloha

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Posts: 57
Reply with quote  #43 
Hi toothfairy.
we now are keeping eye on school lunchl but don't want to lose her trust as she very honest.
Fingers x she come from this but tis very slow
Im so exhausted
Thanks glad all well your family 👍
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