F.E.A.S.T's Around The Dinner Table forum

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freya
Daughter is AN 15. Currently weight restored after FBT, two hospital admissions and day program. Have a team of professionals.

There is no change in her thinking though. She doesn't want recovery, she's miserable/angry. I feel like I can't keep going, how will this ever end. I feel no hope.
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Enn
Hi Freya, 
I am so sorry you are going through this. I know how hard this is, we all do. 

I think it is great that she is WR and she may need to keep the weight going up at a slower pace as she is only 15. 

The thinking takes a long time (months to a year or more). How long have you been at this? 
Is she eating well?
She may not want to recover, not yet and it will take time. What is going on at the moment with her? We can share what we have found to help. 

I understand your exhaustion and not having the energy to go on. But look at how far you have come! You have got to WR. IT does get easier, it really does the referring tends to be the most gruelling.

How do we give you hope? My d is doing very well. She was almost 12 at diagnosis. It took 6 months to get properly WR and nwt at 3 years later she is doing well- really. It does take a toll on us. 
How do we help you, Freya?  Ask us anything you wish.
We all want to support 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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freya
Thank you for understanding. I must be a monster because of how I feel.

Diagnosed September, so we've been at this for 6-7 months. We have an eating plan that we follow but it's not specified exactly what to eat. So lunch for example is 2 grains and a serve of protein, plus fruit serve. She eats a full day's worth most days but not always. But her mental state is very poor and isn't changing.

I don't even have a question, other than can it ever improve even if the patient doesn't want recovery?
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Torie
Hi Freya, if she has been at this same weight for a while, it is likely that the target weight was set too low.  That is the commonest error made by clinicians.  If you would like to tell us a little more about your journey, we can try to help sort out if more weight is likely to help.

It gets so very old, I know.  It feels like it goes on forever, similar to how it feels like we will never again have a full night's sleep when we have a newborn.  But eventually we do.

Hang in there, and take it one day at a time. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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freya
We are actually at WR++ which as you mention is critical for many. Initially the discharge weight was set lower, but things went bad fast so she was readmitted with the intention of going ++
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Enn

You are not a monster! You are a human under amazing pressure. You have been the one on the front line of the ED battle. It takes a lot out of us. 
Yes it can improve. It takes time and some kids need more than food( meds. therapy for self harm and depression etc). There is also brain development/ maturation that has to occur, and the prefrontal lobe does not really fully develop until they are in their  mid 20's. In the last 6 months (my d is almost 15) I have seen huge changes in her cognitive functions. She is finding that there are other things in the world, like her school work and friends etc. that take precedence  over ED.  Honestly I see her letting go of ED more and more every month. It does get better. We are here for you. 

My d did require antidepressants from the beginning and for 2.5 yrs. 
You may wish to read the hope posts as well on the forum. That may help you see that yes there is hope and it takes time. 

You are still very early into this. (sorry). It was at the 6 months mark that I recognized the trauma that is re-feeding and how it affected me. 
Are you getting support? 

Take care. 

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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freya
Thank you. 

I guess I thought WR was going to be a visible game changer. I'm so grateful for the systems that got us to the point. Like so so thankful. 

I still thought it would mark a change, but it seems like we are at the same place just WR.

Yes I have my own support, doesn't seem to be doing much hey. Daughter has her team and meds. On paper we have everything and are doing it all, why aren't we finished, why.
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Torie
Sometimes the changes are so gradual that they go unnoticed, like how our parents are shocked to see our babies have grown so much between visits, while we see them every day and don't notice that.  ValentinaGermania has a technique to help with this:  She colors each day of the calendar as follows:
Red for bad ED day
Yellow for meh 
Green for normal / okay day

People who try this are often surprised to see the yellows popping up more and more until lo and behold! a green in the mix.  Or it can show that all days are indeed red, which can suggest more weight is needed even if they are already thought to be adequate on that xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Scaredmom2019
@freya

Just want to say you are not alone. D is 17 and diagnosed in October 2019. I feel the same exact way. The way you feel about it so normal. I've always thought I was a pretty darn good parent until months into this nightmare I collapsed. I hate it all. Also feel like a mean, angry, miserable monster. 

Is there anyone else who can support her besides you? I know the current pandemic makes this hard for many but maybe you could hand off the feeding to someone else for a bit so you can take some time to recalibrate?

Hugs. Most days I dont even want to get out of bed anymore..
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MKR
Hi @freya,

You have made a huge progress in such a short time. Hang in there.

AN is a major brain trauma. If this were a concussion, we'd all go more gingerly. Luckily, the brain will heal with nourishment. It kind of takes time to let go of its "emergency mode", hence the thinking about recovery hasn't changed yet.

And even when the signs of recovery become very visible - we call them Gold Star Moments here on the forum - there will be an odd throwback here and there. I found those particularly exhausting, because they ruined my sense of achievement, but only for a couple of days.

It's a marathon for all of us. My kitchen saved us, but for 2 years I cooked under huge stress and high alert, often interrupted by tantrums, food thrown or poured away by my ED child. Only in the last 2-3 months have I started to relax and enjoy cooking again.

If your D is going on about exercise, that too takes time to settle. We had to change the subject, distract, massage neck and feet to calm the urge to exercise.

Sneak a break for yourself wherever you can!

All the best,
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Kali
Hi Freya,

If your daughter is weight restored after you being at this for 6-7 months, then you are actually doing very well even though it may not feel like it. Many families do find that weight restoration does not bring about mental change overnight, and we were one of those families. She was weight restored....she hated it....she tried to lose the weight...she lost some...I doubled down on closing loopholes...she gained some back....I ran after her with plates of food....her professional team did their part...the dance went on for long time. I think that a combination of an anti depressant, a very long period of being fully nourished (years!) and encouragement to explore her interests was what had to happen AFTER the initial weight restoration in order for her to recover.

How long? We did that for 3 years. 
There were gradual improvements, mind you and sometimes, there were periods where it seemed that she might be very close to recovery. There was a broadening of food items she would eat, there was conquering fear foods, there was a return to normal functioning regarding school and work and social life. It went slowly but it went in the right direction.

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I still thought it would mark a change, but it seems like we are at the same place just WR.


I remember I thought so also, that if we could just get her weight restored everything else would fall in place. What it was was just the first step and she cannot get well without it. Can you try to find some kind things that you can do for yourself to help find enjoyment and inspiration to continue?

warmly,

Kali
Food=Love
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freya
Thank you so much. Thank you for not just telling me to think positive. I hear everything you say, and I give you all enormous hugs.
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PurpleRain
Welcome, although I'm sorry you need to be here. My D has been WR++ for almost 9 months. I started to see actual brain healing after 6 months WR, there were gradual improvements before as Kali says, and there are still ed moments. just today she started to behave like before due to a (minimal) delay is snack, it's a crankiness that she never had before ED, so o know it's not her. But she is doing so much better (more her real self) most of the time. I used a calendar as suggested by Valentinagermania with colours (red for bad days, yellow for so so days, green for good days) to notice improvement, it was really helpful.
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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Mandycarr
It saddens me to see others feeling the way I do.. but it also makes me feel a weight lifted because I don't feel alone. My son was "normal". Happy. Outgoing. He is now a shell of himself and I don't know why. He could not be more loved and supported. The cognitive change due to the weight loss is something that I can only describe as a nightmare. My 14 year old currently acts most of the time like he is much younger, repeats himself.. cannot speak about himself in any way-- can't look at himself in any capacity. How does this just happen because of restricting diet? 
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Torie
Mandycarr wrote:
It saddens me to see others feeling the way I do.. but it also makes me feel a weight lifted because I don't feel alone. My son was "normal". Happy. Outgoing. He is now a shell of himself and I don't know why. He could not be more loved and supported. The cognitive change due to the weight loss is something that I can only describe as a nightmare. My 14 year old currently acts most of the time like he is much younger, repeats himself.. cannot speak about himself in any way-- can't look at himself in any capacity. How does this just happen because of restricting diet? 

AN is so flipping weird.  Hard to believe, really, that weight loss would scramble their otherwise sensible brains so much.  The saving grace is that this is reversible with full and sustained nutrition. 

I think everyone here has looked at our ED-kids in disbelief.  How could this happen.  To us.  To them.

Yes, we all know that befuddlement. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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painting
I just wanted to say that I think it is fine to feel like things will never end and that there is no hope.  Unfortunately, we all need to keep going and working to help our children.  I often breakdown and who wouldn't because it often does feel hopeless.

My daughter was diagnosed in September with an emergency room hospital admission.  Spent time in the hospital (model patient in that she ate everything and gained weight).  Daughter sees a medical provider, nutritionist and psychologist.  We are following a unit meal plan from a nutritionist.  Daughter is verbally abusive and aggressive.  Daughter continually threatens to kill me and has physically attacked me.  She does not want to get better or participate in treatment (From mid September to Mid December she went from 99lbs up to 124 pounds but has since gone back down to 115 and then slowly up to 121 and now back down) .   Daughter is deep in throws of disordered thoughts.  In spite of this, the one bright light is that for the most part she eats enough to be in an acceptable weight range (but not the weight restored goal).   

Daughter is an extreme perfectionist and has continued with school and maintains the majority of her pre-diagnosis activities (She is quirky but presents as a "model student" outside the home).  Many different diagnosis in addition to Anorexia have been thrown out.  Daughter suffers from Anxiety but refuses to try medication. She is allowed to go to school and activities because this is the only motivation for her to follow the meal plan (our only leverage).  With COVID Stay at home orders it is difficult because with online school and no activities there is less leverage to use.  Daughter is obsessed with exercise and it is difficult to stop her from exercising.

There are times when daughter presents as if nothing is amiss (of course food is not involved).  This is what makes this disease so difficult for me -- to see glimmers of the child you used to know and feel uplifted and hopeful and then have that hope smashed when the glimmer is gone.   I am going to try to hang on to the the glimmers of hope for strength to keep pushing forward, maybe that can help you as well.
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MKR
Oh, @painting that must be so hard now. Please know you are not the only one.  Hang in there!

You certainly merit starting your own thread. That way you will attract a lot of tips on how to tackle this stage of recovery.

In the meantime, your daughter's exercise must stop! Not easy at all, very hard, the distress can get huge. But like any OCD (and this one is brought on by AN itself), it must be interrupted. Also remove any dumbells, weights, even improvised ones like books or cans of food.

Use as much distraction as you can after the meals. Forget the dishes (get a helper or just put them aside) and don't let your daughter leave the table and wonder off. Start a topic, a game, a tv show, a craft done sitting down.

Make sure your daughter goes to the bathroom before the meals, not after (mine did push-ups and planks there). Limit her number of trips up the stairs (mine went up and down each flight several times for one trip).

If she gets physical (been there, too), reiterate that violence is not acceptable in your house. The more the ED hears it, the sooner it will sink in. Set consequences. You can show empathy for her distress but all in the family deserve respect.

Feel free to start a thread for more ideas from the forum.

All the best,
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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MummaBear21

Dear Freya
It is so easy to be defeated by this illness. It is relentless and cruel. Your beautiful child has been corrupted and is ruled by something you can't see or easily fix. It constantly pushes you, forcing isolation and stress. The lightness you felt in everyday life has been replaced with dark heaviness and constant worry. It is normal I think to feel hope slip, and bonds tested. Will it ever end? I think in many ways those who suffer - families, carers and those with an illness - will always be touched by it. BUT please never lose hope and love. Sometimes that's all we have.
When I was rock bottom I was forced to spend a little time away to get some distance, to build my resolve and keep fighting.
My D's illness morphed many times, and there have been many times along the long road I have felt at a loss.
I feel her ED still lurks. But she is now stronger, testament to the fact we didn't lose hope.
I have shared the link to my D's blog in another post, but reading her latest chapter, posted last night I thought of you and wanted to share it. In particular, 'Chapter 1: 183 later'.

https://combobulatedotblog.wordpress.com

I hope it helps and you and your family see some light soon.
Sue
D (26) diagnosed AN (BP) in 2010. After trying a multitude of treatments D is making progress, is rebuilding her life and is a source of great inspiration.
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freya
Thank you for sharing and for not forgetting me. 

I have a theory, that she is dropping out of WR+. I think the + is almost gone and we are seeing more AN behaviour creep back in.

We have good team. I just want it over. Now. And it's not.

Thank you. X
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freya
MummaBear21 wrote:

Dear Freya
It is so easy to be defeated by this illness. It is relentless and cruel. Your beautiful child has been corrupted and is ruled by something you can't see or easily fix. It constantly pushes you, forcing isolation and stress. The lightness you felt in everyday life has been replaced with dark heaviness and constant worry. It is normal I think to feel hope slip, and bonds tested. Will it ever end? I think in many ways those who suffer - families, carers and those with an illness - will always be touched by it. BUT please never lose hope and love. Sometimes that's all we have.
When I was rock bottom I was forced to spend a little time away to get some distance, to build my resolve and keep fighting.
My D's illness morphed many times, and there have been many times along the long road I have felt at a loss.
I feel her ED still lurks. But she is now stronger, testament to the fact we didn't lose hope.
I have shared the link to my D's blog in another post, but reading her latest chapter, posted last night I thought of you and wanted to share it. In particular, 'Chapter 1: 183 later'.

https://combobulatedotblog.wordpress.com

I hope it helps and you and your family see some light soon.
Sue


Wow thank you. Your daughter is incredibly articulate. That really spoke to me about needing to wait, just keep waiting. 

Thank you
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