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whenwillthisbeover

D has been doing relatively well. She’s been within her target range for almost a year but still has some behaviors we are working in eliminating. We have knocking them out on by one. The most recent one last week was slurping out spaghetti sauce during dinner and weird stuff like that. She’s slowing getting back into her sport and we’ve given her more autonomy with her meals. 


We weighed her today and she’s lost 2 pounds since last week. While it’s not the end of the world, we both had a meltdown. I freaked out because she’s obviously not getting enough calories. And she freaked out because she wants to know when we can go back to normal and she not have to be weighed every week?  When will it not be a big deal if she loses a couple pounds?  

I told her that things would go back to normal when there were no more weird behaviors with food and when she could maintain her weight without losing but that wasn’t a good enough answer for her. She said if she could eliminate all behaviors when would it be?  How much longer? She was really pressing me for a timeframe and I told her it was up to her but this was not the answer she wanted to hear. 

Those that have gotten to the other side of this, what have you said when they ask for a timeline / when / how much longer?  I feel like we are getting close but obviously not there if she still has behaviors. Also what are the signs that they are fully recovered (if that is even possible)  Sorry for rambling and I hope my question makes some sort of sense. 

 

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Enn

great job so far!


A few things here are a bit concerning. I will address them first then answer your question.
losing weight with more autonomy  is concerning. Stepping up nutrition and maybe more supervision to get the weight back and maybe more might be required.
Yes keep working on the behaviours. 

As for her wanting to know the timelines, there is no answer that will appease her and there really is no answer. It takes as long as it takes. There can be blips  like the most recent weight loss your are currently experiencing. I don’t feel she has control over when this will be over. When her mind gets better she may stop asking. The weighing may be decreased when she gets to a good level (are you sure she is well WR?). She may need to gain more . And that she at least maintains and grows properly. I cannot recall her age bit as a young woman she will need to gain into her 20’s. My d at 3 years in gets weighed every month still as she is still growing but more often every two weeks if there is weight loss.  There may not be a time where a ‘little bit of weight loss’ is not a big deal, sorry. Even a bit of weight loss can trigger ED. (Happened here with 3 pound weight loss from 111 pound to 108) 

i honestly am not sure that there is a normal. The new normal may be the only normal she can have. My d is now 14 was 11 at diagnosis and she knows for the foreseeable future she will have 5-6 meals per day and monitoring regularly with her team.

 As for her behaviours until they melt away by working on them and feeding her up, that takes again as long as it takes. Unfortunately they don’t  just turn off because she wants them to. She does not have control. It is us parents that work on them with them  over and over again until the don’t do them anymore without thinking. Or we teach them how to be aware of them and to not do them. It is work! A lot of work!

Full recovery, there is really no good agreed upon definition. For me it would be intuitive eating and no worries about weight or exercising or diet etc. Living a good full life, eating for enjoyment all different  types of foods , no restriction. That would be awesome!

I wonder if you just tell her you understand how difficult it is and that you will help her to get better and then distract her. There is no good answer for her and she may perseverate if you engage too much. As she gets better she may not even ask you. 

 

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
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We weighed her today and she’s lost 2 pounds since last week. While it’s not the end of the world, we both had a meltdown. I freaked out because she’s obviously not getting enough calories. And she freaked out because she wants to know when we can go back to normal and she not have to be weighed every week?  When will it not be a big deal if she loses a couple pounds?  


There really is no right answer to her question is there? Her illness wants an answer, but it is impossible to say. You mention in you other posts she is 13, so she can NEVER be 2 pounds less than she is, as normal growth would indicate that she should be continuing to increase her weight for another 10 years or so. When she is starting to increase her weight spontaneously is when you know that she is starting to manage this well herself. 

She won't need the same levels of supervision down the track if she is continuing to eat well. She won't need the same frequency of weighing, but right now it sounds like her ED is still relatively strong. That of course means that there is no answer you can give to her that will "appease" her. 

Perhaps the best that can be done is let her know that you want this over with as fast as she does, but you will stay the course with her as long as it takes. Then back to the grindstone. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Torie
I wonder what would happen if you told her (with sadness in your voice) that there is no way to know when things will be better but they WILL get better, and you will always be there to help heir.

This brings to mind a conversation that went something like:
D: How long are you going to keep doing this?
Me: As long as it takes.
D: So are you still going to be doing this when I am 50 years old?
Me: I really don't think it will take THAT long, but if it does, yes.

And another:
Me: It WILL get better.
D: It won't. It will never get any better.
Me: I'm sorry it's so hard.  It WILL get better.
D: (After a few round of "It won't")  How long will it take?
Me: I don't know.  Sometimes it takes a long time.
D: HOW LONG?!?
Me:  I don't know.  It can take years, but I hope it won't take that long.

I realize that neither of these conversations replicate the situation you are in, but perhaps it will help to know that my d did seem to take comfort from them. 

It really does get better.  Keep swimming.  xx

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

I told her that things would go back to normal when there were no more weird behaviors with food and when she could maintain her weight without losing but that wasn’t a good enough answer for her. She said if she could eliminate all behaviors when would it be?  How much longer? She was really pressing me for a timeframe and I told her it was up to her but this was not the answer she wanted to hear. 



Oh dear, I so remember these conversations. You cannot tell her how long it will take because you do not know. You can only tell her that there will be a time when you all are back to normal. And it is not really up to her, it is up to brain recovery starting and up to how long brain recovery needs.
At some point I stopped to tell my d any numbers or time frames. I just said to her "I will help you to get 100% recovery, no matter how long that takes. I love you and I will help you no matter if you are 18 or 28." She gave me a big smile about that and she said later that this helped her to fight the ED thoughts, that she could tell ED that her family will not allow her to have that ED no matter how old she is.
Keep feeding. There is light at the end of the tunnel.
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MKR
At some point I stopped to tell my d any numbers or time frames. I just said to her "I will help you to get 100% recovery, no matter how long that takes. I love you and I will help you no matter if you are 18 or 28." She gave me a big smile about that and she said later that this helped her to fight the ED thoughts, that she could tell ED that her family will not allow her to have that ED no matter how old she is.


Great answer @ValentinaGermania. So reassuring.

@whenwillthisbeover,
Perhaps you can add to that a bit of empathy (which I know you show her) how you, too would like it not to take long but will be there for her until she is 100 pc recovered.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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whenwillthisbeover
Thank you everyone for the kind responses.

Interestingly, she hasn't asked the question again since the meltdown a couple of days ago, but now I have some good ideas on how to respond the next time so thank you again.  We're back on the structured/supervised meal plan with added smoothies and protein drinks to get her weight back up.  

I have another question, I know that they have to continue to gain weight into their 20's, but how can I determine how much?  She's currently 13 years old, 4 ft 10 inches and weighs 103 lbs.  She also just started her period a few months ago and has been regular.  We are a family of very short people, so not sure that she will grow much more.  She has two grandparents that were also 4'10, so wouldn't be surprised if she was done growing.  I've evaluated her growth charts, and she's currently on her growth curve from before ED, which is 50%, but if she's stopped growing (or doesn't grow much more), how can I determine how much weight she has to gain? We've made so much progress this past year, I don't want to mess this up and make her gain too much or too little.  
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ValentinaGermania
Hello from another quite short family! 🙂
My d did not grow from age 15-18 due to AN. Surprisingly she grew 1,5 cm after refeeding at age 18 and another 1 cm now at age 20. She is now taller than me. So sometimes they catch up with delayed growth when the malnutrition stops.
Normally a child gains about 1-2 kg each year. Around 12 they gain more and later a bit less. Do you have a historical weight chart so you could check how much she normally gained in a year?
It is not very probably that you will make her gain too much. The metabolism increases and she will hopefully get hunger cues back. It is more probably that she gains too little and you open the door for AN again with that. Give her some buffer to be in the secure weight range for relapse prevention and to survive a stomach flu for example...🙂
Keep feeding. There is light at the end of the tunnel.
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greekdude
Thank you everyone for the kind responses.

Interestingly, she hasn't asked the question again since the meltdown a couple of days ago, but now I have some good ideas on how to respond the next time so thank you again.  We're back on the structured/supervised meal plan with added smoothies and protein drinks to get her weight back up.  

I have another question, I know that they have to continue to gain weight into their 20's, but how can I determine how much?  She's currently 13 years old, 4 ft 10 inches and weighs 103 lbs.  She also just started her period a few months ago and has been regular.  We are a family of very short people, so not sure that she will grow much more.  She has two grandparents that were also 4'10, so wouldn't be surprised if she was done growing.  I've evaluated her growth charts, and she's currently on her growth curve from before ED, which is 50%, but if she's stopped growing (or doesn't grow much more), how can I determine how much weight she has to gain? We've made so much progress this past year, I don't want to mess this up and make her gain too much or too little.  


Dear @whenwillthisbeover 
https://mygrowthcharts.com/ is a great site. You just data entry the values for weight and height and it shows various metrics, calculates BMI, etc. It seems that you are on the correct path of extrapolating the past curves to predict future healthy values.
Regarding the period, our daughter stopped gaining height when the period started. My mother as well. My mother told me that she gained some cm when pregnant to my older sister at the age of 21. It is wierd because my (16yr) daughter is 1.63cm but my wife close to 1.77cm so it makes a contrast.
Now, regardless of the height, the weight should increase till she reaches 18yrs. It's all in the graphs.
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