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

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tireddad
new here - some quick background. 

D is 12 yrs old and diagnosed with AN around Easter time - had been restricting since Jan 2019 (off and on). Got her a quick referral to CAMHS and she had been in FBT since May. We also read up on the whole thing and got started ASAP on feeding her and didn't wait for CAMHS. D had lost some weight but has never been underweight and has since gained weight and looks healthier and heavier. We supervise school lunches as this was the major restricting opportunity. She eats pretty well now and will spontaneously snack at home and even with friends. There are some foods she refuses, but they are not always what you might expect - she is happy eating some pretty calorific foods including chocolate, chips, takeaways and butter but will then turn her nose up at nuts or yoghurt. On the whole we face little to no resistance and she is not purging. She tried that at the start but didn't like it much so that dropped away (thankfully). She generally seems pretty settled and happy most of the time. 

We are continuing the FBT but seeing the therapist less often and now D is back with a psychologist and starting CBT.  She talks openly at the sessions and while her behaviour is pretty steady, her thinking is all over the place - just wants to be thin, doesn't want to get better, doesn't want anything to change.  I get that AN thinking takes much, much longer to fade, but not wanting to change is an interesting one as with the status quo she is not getting any thinner. We make sure of that.

She also filled in a questionnaire which seemed to show she is struggling with all sorts of difficult feelings (esp social anxiety and self esteem), but this doesn't wholly fit with our overall experience of being with her. It is also like the AN has become a kind of comfort blanket for her and she feels it is an important part of her identity now.  We are hopeful that CBT may start to tackle some of this, but we are feeling a little stuck right now.  

She is healthy, at a good weight and eats pretty well so our initial hyper anxiety has reduced, but how do we now move her forwards when she remains resistant to progress (even though the progress is already clear)?
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Foodsupport_AUS
Welcome to the forum, sorry that you have had to find your way here. 

It really does take a very long time for them to get better, and it is also pretty common for them not to want to get better. They are often quite keen to get rid of the supervision on the other hand. 

My D also reported various issues that did not always seem to fit with observations. To me it often felt as though she overplayed the way somethings went in her head. I found as we got further down the track the vast majority of this just got better all by itself. 
Do you think your daughter is at her highest ever weight? At 12 it is likely she should be continuing to gain, so it is possible part of the issue is her body and mind are still playing catch up with nutrition. 

Keeping on going an insisting that the food goes in may be all that is needed with time. 
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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ValentinaGermania
Big question indeed is wether she is at a good weight for her body or not. How did you calculate that? Do you have a growth/weight chart? Most patients need to overcome their former highes weight to get brain recovery started. And it takes about 4-6 months at least after WR, in many cases up to 12 months to see some slow change in mood, mind and behaviour.

From my experience the thoughts about wanting to be thin, don´t want to get better and don´t want to change anything are ED thoughts and those thoughts get less with brain recovery. You say she is not restricting the typical food any more - is she eating enough fats and glucose to feed her brain? 30% of intake at least should be fats. That is a lot...
Keep feeding. There is light at the end of the tunnel.
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Torie
Wow, it sounds like your d has made great progress!  Kudos to you and her and the whole family!

It is hard to know how much will fade with time, and what might require attention.  Many ED-kids have anxiety disorders before/during/post ED.  It might be too early to sort that out, but it wouldn't hurt to read Tamar Chansky's book called something like _Freeing Your Child from Anxiety_.  

Best wishes and please keep us posted. 

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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tireddad
Thanks everyone.
Foodsupport_AUSI feel the same - that she is overplaying things sometimes. It's so hard to know what goes on in their minds though.   Interestingly she shows no sign of wanting to get rid of the supervision - quite the opposite, She likes us supervising her lunches and likes going to CAMHS. Maybe it reassures or comforts her and makes her feel safer. Maybe she likes the attention. 

ValentinaGermania- Agree on her weight. We do not have growth charts but I'm pretty sure she's at her highest ever weight (although we haven't had a weigh in for a while at CAMHS), is continuing to grow and recently started her periods (she has had two now). I think her diet is pretty high in fats - to the extent that I worry that we have lost all focus on 'healthy eating' although I do realise that's not the priority. She eats a lot of crisps, fried foods, butter, some cheese and plenty of chocolate and sweets - I also give her sugary drinks where I can. 

She did have a recent episode over a weekend where she started restricting like we hadn't seen for months - thing is she tried but she wasn't able to do it very well as a result of her hunger cues. She ate far less than she has for a long time, but wasn't able to starve herself completely. She was too hungry and the hunger won out. What gave the game away was her mood as it always does. 

She clearly has some anxiety and that is all tied up as well with her peer group friendships and the challenges of being an early teen.  

For now we will continue to feed her as best we can and continue with the CBT at CAMHS and see what that brings. I know we are still in the early stages really and I'm not sure I expected her thinking to be correcting at this stage. Its just hard to sustain it all when you feel like you're treading water. I know you all know that only too well though.  

  
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ValentinaGermania
tireddad wrote:
We do not have growth charts but I'm pretty sure she's at her highest ever weight (although we haven't had a weigh in for a while at CAMHS), is continuing to grow and recently started her periods (she has had two now).


When she had only 2 periods in a row now that is really early days. Wait until she has had 6 in a row. I am sure you will see a difference then.
We did not have any growth charts either as my d was not sick at all from age 5 to 17. She did not see any pediatric in that time and school does not weigh them here. So we learned to see on older photos what a healthy looking child did look like and tried to get my ds face look like that again.

It is hard to be patient with recovery but it takes a lot of time for the brain to heal. Try to be patient. In year 1 we did not see much progress. Year 2 was a big step and even now in year 3 we still saw a lot of progress. There is no ED behaviour left now (knocking on wood). But it really takes years to recover from AN.

What helped me to see the tiny steps of progress was to mark my calendar. We had red for bad days, yellow for "normal" ED days and green for good days. It was often the case that I thought we had a bad week and looking in my calendar I saw it was only 1 red day but also 2 green ones. I remember that once hubby said to me "did you realise she did not complain about food in the last 2 weeks"? To be honest, I did not!
Keep feeding. There is light at the end of the tunnel.
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tireddad
Update: Another week in and another session at CAMHS doing CBT. D seems to be struggling. She is still eating and I think gaining weight (she did not get weighed this time which is annoying). But she still does not want to get better, thinks we are just trying to make her fat and just wants to be left alone to avoid eating. Its like its an ongoing and exhausting struggle between her and ED and she just wants to give in to ED. However, the confusing thing is that this is not what we see day to day. Day to day we see her eating, asking for food, I see her mood OK (too much time on her phone but that's her age and stage too), busy with social things and doing OK at school. She is really tired right now so we will get her bloods and iron etc checked. Otherwise she seems alright.  She came out of the session and asked for KFC! I know we just need to keep going and keep feeding and supporting. So confusing though and so hard to think she believes that we are acting against her and not in her interests.
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Foodsupport_AUS
May be her ED just is pushing her to be thinking this way? One part is your real D the other is D with ED. She may find it hard to admit to ED D that she is willing to fight it. It is easiest if she still says she is protesting. The denial of wanting to get well when everything else seems to be the opposite reminds me very much of my D once she was starting to get better. It calmed her ED thoughts but she slowly but surely started doing more of what she wanted to do- stay out of hospital, eat some food, play with her dog. Her ED wouldn't actually let her do any of that but if she protested it stayed quieter. 
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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tireddad
Thanks and I agree - she is on some level at least fighting it. She is eating after all. It's like she is tiring of the fight sometimes, but we will keep going. I suppose it's quite reassuring to hear that this reminds you of your D when she was starting to get better. I feel that D is starting to get better in her actions, but the thinking is miles away.  
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Salee

Sounds very similar to our situation. At home wants and hopes for so much from CAHMS meetings says she will talk and tell them how she feels so that she can get help with her thoughts but as soon as we get there she shuts down and we sit doing nothing productive for an hour and then leave disappointed and angry (me and h feel that way too!!) 
Ive tried looking for help outside CAHMS but again no one will while with CAHMS. 

Frustrating that we seem to be getting nowhere 

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Torie
tireddad wrote:
But she still does not want to get better, thinks we are just trying to make her fat and just wants to be left alone to avoid eating.

It is okay that she doesn't want to get better.  That is very common, and it is not necessary for her to want to get better; you can drag her back to health regardless.

My d was like this, too, and she is doing great now.  It takes a l-o-o-o-o-o-n-g time for brain healing, but eventually it does happen with time + weight.

I will never know for sure, but with my d, I think it was part of the self-loathing; she didn't think she deserved to get better.  Every once in a while, we would see a tiny hint that she actually did want to get better.  It was like there were two parts of her brain: the ED part and her real self.  It makes sense that the ED part wants to keep restricting, wants to be left alone, wants to stay skeletal.  But your real d is in there, too, and is getting stronger with each meal; each pound. 

Keep swimming. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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ValentinaGermania
tireddad wrote:
Update: Another week in and another session at CAMHS doing CBT. D seems to be struggling. She is still eating and I think gaining weight (she did not get weighed this time which is annoying).


Are there no regular weekly weighings? Why did she not get weighed???
Can you take her to the GP to get weighed instead? You need to know if you fed her enough so she gained last week.
Keep feeding. There is light at the end of the tunnel.
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PurpleRain
Hi tireddad, we have similar time frame.  my d just became 14 so so a bit older. I am a reading gobsmacked threads at the moment,they might be useful to you. Some of them are about feeling stuck and she describes really similar things to your current post. Hope it helps
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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melstevUK
Hi tireddad,

While I agree with everything the others have said I think the social aspect and the value of thinness which is so great in western societies contributes to the lack of willingness to let the illness go. There is no doubt that patients '''feel fat' for a long time even when they are still thin. But giving up the illness and often the rewards that it brings - maybe others saying you look great, for example, can be very hard to part with. 
I think it is worth focusing on what she sees as her strengths, helping her to think about her future and her dreams, and where not being thin won't matter.  Show her how you value her for who she is, how her friends value her and encourage her to see how very superficial our culture is with its focus on celebrity and looks and how there is so much worth having in life other than being thin. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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