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Torie

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Reply with quote  #26 
Quote:
Originally Posted by aloha
a mother in arms.


LOVE that!!!

Scaredmom - I'm so glad to hear about all the sitting you have arranged.  Well done!  It must be such a relief to your real d even though it makes ED mad.

Keep up the good work! 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  #27 

Aloha, thank you for standing with me!

Foodsupport_AUS and mjkz, You are right! ED is fighting hard on some things. Last night, ED  was really fighting sitting again! But we got 10 solid minutes then  she had a fit. But she did sit. I know it will take time to set these new rules in stone...
She had seen the pediatrician yesterday gained 1.1 kg (Happy day!) but after those appointments, she is upset so I was not surprised she fought sitting in the evening. We are still overall two steps ahead. And with the weight gain, I know it is better. Trying to stay positive.


scaredmom

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Reply with quote  #28 
Torie, She really does seem relieved when she sits. So it is so perplexing when she gets mad. I guest ED is making her feel guilty? I have said that it is "OK to sit", "nothing bad will happen if you sit" "It is normal to sit" I hope these words get through to my real baby to soothe her worries.

big hugs
toothfairy

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Reply with quote  #29 
Hi scaredmon
I would advise that they dont discuss the numbers & gains with her she is just 11 right?
Just my opinion btw,
You are making progress

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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.
Torie

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Reply with quote  #30 
Quote:
Originally Posted by scaredmom
She really does seem relieved when she sits. So it is so perplexing when she gets mad. I guest ED is making her feel guilty? I have said that it is "OK to sit", "nothing bad will happen if you sit" "It is normal to sit" I hope these words get through to my real baby to soothe her worries.


It isn't your real d who is mad - it is ED.  Your real d is relieved, but she isn't strong enough to fight ED on her own.  She needs you to be the one who beats ED back into its cage.

And you are doing that!!!

Yay you!!!

Keep up the good work. xx

-Torie

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

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Reply with quote  #31 
When our daughter was in her standing all the time phase, we would go on a lot of drives.  It's pretty difficult to stand in a car, so we drove all over the place.  We probably drove down most of the roads in our county.  I grew up here, so I could usually come up with a memory or a story to tell her as we drove, which helped her relax and take her mind off ed.  She told me later that our drives helped her so much, and was a relief to her to not have to stand in the house.
scaredmom

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Reply with quote  #32 
Tf, she does not know her weight or gains. All we say is she is doing well. Or we say her vitals are stable- that appeases her. She has never asked how much she weighs, sometimes asks if she Gained. She never asks numbers. Maybe as she is only 12? I never want her to know the numbers. Thanks for caring about that. Makes me feel I am doing the right thing.
Byebyeed. I like the idea of driving. We do that, but it's a small city. I am trying hard- wish there was magic!
toothfairy

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Reply with quote  #33 
scaredmom- great, you ROCK!
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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.
toothfairy

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Reply with quote  #34 
Dear Aloha  - so nice to hear you got your D into hospital and you are making progress...Food is her medicine ...keep going...TF
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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  #35 
Tf
She is home and I asked what is the best thing about being home after seven weeks in hosp.
Thought she say her bed or being with her sister
She said not having to stand all the time or go up and down the stairs in secret.
She gained three kg in hosp but we on high alert
Thanks again
A.
mjkz

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Reply with quote  #36 
aloha glad to hear things are going better. My daughter said exactly the same thing about not having to stand or exercise.  This is why it is so important to get them to stop those ED behaviors!!
scaredmom

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Reply with quote  #37 
Aloha and mjkz, it is so good to know they do get better and are relieved. My d is sitting more and I have "caught" her sitting and drawing, She is a good artist. But when she sees me she jumps up and gets mad. I think there is some guilt there. I know I have only been hitting this hard in the last week. Hoping everyday gets a bit better.
evamusby_UK

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Reply with quote  #38 
I am well impressed, Scaredmom. I have read this thread with great interest. Eight days ago when you posted it sounded rather hopeless, and now what a difference!

I love that it is working.

When mine was 10 in hospital, it was all reward charts for sitting 10 mn during home visits, and it became a total cynical mess. The reward system backfired so very fast. She would only sit at home for short periods for T-shirts or money, yet in hospital she could sit because that was the nurses' expectations. Having said that, there were particular times of the day where her 'rules' would allow her to sit, e.g. for meals, and for two hours of evening TV.

The anxiety when she sat was very real, though - I remember the effort it took to plan a 90mn journey to a party she really wanted to attend. And the courage and determination it required of her. The fear was real. And I was gutted to see my little girl not allowing herself any rest, just standing there so much of the time.

For anyone else reading, in our case we continued to request sitting but not as energetically as you have. We decided to pick our fights, so with weight recovery achieved, we concentrated on fear foods, and that seemed like enough fear to go through.

The sitting gradually improved. She would sit, but maybe not use the backrest. Then a year later or so, one day when she was had a nasty cold, she suddenly threw caution to the wind and allowed herself, unprompted, to lay on the sofa. I think it gave her a sense of mastery against the ED. It was like a switch went off. She never had an issue with sitting after that.

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Eva Musby, mother, author, produces lots of resources for parents at http://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
[comp]
scaredmom

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Reply with quote  #39 

Hi Eva,
thank you for your support.  Interesting how 'defeated' I felt last week. Looking back, I am feeling more optimistic.
Yesterday she sat for over 2 hrs total driving in the car and canoeing (father did the paddling mostly). Then after supper she was required to sit for 45 min again (did it while drawing) and then she sat with her dad before bed to watch hockey! Well then don't you know, she was upset this morning. That's ok, she is moving forward overall.

She is now verbalizing when anxious. She said last night " I am anxious but don't know why" She and I could not pin it down, but I spoke to her soothingly. She wanted to "do something" she was "bored" but would not play a game with me. She was agitated- I think it was ED thoughts about sitting "all day".

Anxiety moves to different objects, food, friends, activities and whether she is allowed to do them etc.. trying to figure this out.
Thanks again!



 

evamusby_UK

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Reply with quote  #40 
Do we ever truly know why we're anxious when we're anxious! The main thing is she's learning she can ride it out, and that she's not alone but has your love as she does so, right?

I love the canoeing bit! 
I knew about sitting for TV and for car journeys, but how wonderful to sit for canoeing!!!


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Eva Musby, mother, author, produces lots of resources for parents at http://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
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scaredmom

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Reply with quote  #41 

This week has been hard. ED is mad.
D is fighting the sitting, but IS sitting. Just getting angry. She has been on olanzapine  and I really felt that after she started taking it, she was more agitated. I have read posts on sertraline/Zoloft and her peds had given a prescription prior to admission to hospital and we held off on it until better weight. The psychiatrist suggested olanzapine so we did that first. Well,now we have started (just last night) sertraline 25 mg per day.

I know it will take awhile to kick in.

Good news too, we went to a restaurant last night - D wanted to  do it! I plated her food and she ate, but was anxious to get home right after. So although she was upset  at the restaurant, it was a step forward. Doing some challenging foods today too and she is not too upset.

There is always some good with the bad, so to speak. I am learning to stay positive( today is hard) as we are really in a better place than 2 months ago when she was discharged from hospital.
Thanks for "listening"!

toothfairy

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Reply with quote  #42 
Scaredmom,
you are doing great, We are listening sand you are making brilliant progress..it is so so hard... 
I am just  wondering why she was so anxious to get home. The only reason I ask is my kid was like that when he was purging.

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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.
scaredmom

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Reply with quote  #43 
Hi TF,
She was anxious about sitting. She had to sit in the car to get to restaurant, had to sit aiting for table. Had to sit through dinner and sit in car again to get home!! We have not had any purging so far, but I do check a lot. Thanks for reminding me that ED is very crafty!
toothfairy

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Reply with quote  #44 
Ah of course the sitting , ah she did very very well...great progress
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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.
mjkz

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Reply with quote  #45 
You are doing so brilliantly!!  Seriously from your first post to now it is like night and day. I think when you are in the trenches you have a hard time seeing how well you are actually doing.  I am amazed at how fast you got the sitting down to happen.  Your daughter is in there fighting hard to get better and luckily she has really good support to do it.  My daughter took forever to really get the idea that sitting was fine and she didn't have to exercise all the time.  When ED gets mad, it will feel like you have flown right back into the eye of the storm and in some ways you have.  The best part is that the stormy parts will be shorter and farther apart-still gut wrenching when they come but after the initial panic (we're here in this same place again??!?!), you will be able to take it in stride and keep moving forward.
scaredmom

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Reply with quote  #46 
Hi. Mjkz,
Your assessment of our situation is really helpful to me. I know it is better overall, but you are right, when we are in the storm it is hard to remember how far we have come.

She had friends over yesterday and we had a camp fire, she ate smores!! She ate them because her friends were eating and she wants to be "normal" so she asked me how many to eat, I told her she had to eat two and she did. Told me after that is was hard, but she just sat with her friends and did it! She did not even come to me for support! So I will count that as a "win" for her against ED.

Everyone on this forum is so selfless with their support and kindness. The collective experience and wisdom should be made into a book and given to health professionals and families right at diagnosis! The access to great information here is unparalleled!!
toothfairy

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Reply with quote  #47 
Great about the smores , I would have them again very soon.
As the weight goes up & the fats get to her brain,with time her state will get better.

Then it will so much easier to deal with.
You are on the right track ..
keep feeding & lots of butter & cream mixed in ....

__________________
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  #48 
Hi ya.
My d just played her guitar for first time in
15 months later hearing "Adele "
I'm so happy
Had to share
Not out of these woods but better
Still battling those ilogical thoughts all the time
A 🙏x
scaredmom

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Reply with quote  #49 
Hi Aloha, what wonderful news! Your d is making a big l step forward. I am so glad you shared this with all of us. Enjoy this!
XX
toothfairy

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Reply with quote  #50 
Aloha, - Great news- keep feeding, put butter and cream into whatever you can....
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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.
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