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

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Warriormum
Evening all. I don’t know where to start. Daughter was hospitalised with Anorexia aged 12. 2 inpatient stays followed and lots of hard work until fully WR about 2 years ago. We got part of our daughter back then BUT Anorexia still has a tight grip of her. I supervise all meals and snacks, with prompting, distraction etc still. She feels ‘grotesque’ and struggles with anyone looking at her. She can’t bear us to hug her because body image is so bad. Her head is full of guilt from eating and she fights the urge to burn it off. For us, full WR (as per growth chart) hasn’t had the effect others see. CAMHS are at a loss after 5 years of therapy - CBT, family therapy etc. 5 different medications have been tried. Has anyone else experienced this? Has anyone any insight or suggestions please? Thanks in advance.
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Foodsupport_AUS
Welcome to the forum. Sorry that you have had to find your way here. 
Although some people do recover with just weight restoration, others do require therapies as well. At five years into the illness it is easy to see why you are starting to lose hope that she will recover. If felt that way too. 

It is possible that she is not fully weight restored, has she continued to gain over the last two years as is normal for teens? It is also possible she continues to have some energy deficit that is perpetuating her symptoms. 
For my D what has led to much more recovery has been not focusing on the weight but rather focusing on quality of life and normalisation. What happened with my D goes against all the advice you will read on here, so do take it as you think appropriate. At nearly 18 we had been battling ED for just under five years. D was less depressed and suicidal than she was but she still was very deep in her ED thinking she couldn't get better. She did however want to go to university (still living at home) and we pointed out to her that she could not go to university if she required supervised meals - she had to be responsible for feeding herself. The hand over of feeding herself was not what I wanted, much faster and rather than going back to supervision when she inevitably lost weight she was encouraged to stop the losses, which she managed after around 5kg. But she did manage to feed herself, and she did manage to be responsible and initiate three meals and snacks a day over the next few years with stable weight. She started to challenge herself after the first year (still seeing therapist) trying pizza, eating out with friends, going for crepes. All things she had been really struggling with prior to self feeding. We are now five years down the track from there. She has very slowly gained some weight, still below where she needs to be. She has maintained her period throughout. She is increasingly happy, engaging in life and finishing off her degree. Eating out no concerns, and there are no longer fear foods. She is acknowledges the need to continue to work on weight gain but she of course does not prioritise this for her. That being said she does work hard on consistent meals, consistent routines and self care. 

Hopefully you and she can find a way forward for her. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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Warriormum
Thank you so much for your reply:-) It gives me hope! Daughter talking about University too. Can I ask what therapy your daughter found useful please? I am really struggling to find a suitable therapist here that has heard of FBT. Thanks again.
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scaredmom
Hi Warriormum,
I too welcome you to the club.
I do hope we can provide the information and support you need to help your child.
Good job on WR !! we know how hard that can be.
The body image stuff is difficult and some have had to ignore and distract. I know others will tell you what worked for them. 
It is true that WR is only part of it and then we have to tackle the co-morbid conditions. Have or are you doing FBT now?
You stated that she tried many therapies. What are you dealing with at this time? Is it her mood, reluctance to eat? Exercise compulsion, lack of more weight gain?
we had to go 10kg above What the  team said to see some improvements but again that may not work for all patients. My d is still on sertraline for her anxiety.
Does she have another psychological diagnosis? 
What meds have been tried?
I don’t wish to inundate you with so many questions, but some of those answers can help us to provide some strategies.
The one thing I have seen here is that there are so many roads to Rome and we can only share our particular experiences with ED and by doing so, hopefully something helps you. There is no one perfectly correct way.
I have been so impressed with the carers here. So many creative ingenious ways to get through this illness. Please keep asking questions. we all wish 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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tina72
Warriormum wrote:
Evening all. I don’t know where to start. Daughter was hospitalised with Anorexia aged 12. 2 inpatient stays followed and lots of hard work until fully WR about 2 years ago. We got part of our daughter back then BUT Anorexia still has a tight grip of her. I supervise all meals and snacks, with prompting, distraction etc still. She feels ‘grotesque’ and struggles with anyone looking at her. She can’t bear us to hug her because body image is so bad. Her head is full of guilt from eating and she fights the urge to burn it off. For us, full WR (as per growth chart) hasn’t had the effect others see. CAMHS are at a loss after 5 years of therapy - CBT, family therapy etc. 5 different medications have been tried. Has anyone else experienced this? Has anyone any insight or suggestions please? Thanks in advance.


Hi warriormum and a very warm welcome from Germany. I am sorry that you need to be here.
How old is your d now? Does she have regular periods and did she develop a female body?
The problem about WR it that this is no fixed number (at least not with a growing child at age 12 and not with a young adult too). Some needed to overgo all historical weight charts to see brain recovery starting. Did you see any progress in the last years? Did she eat extras, does she eat fear food relaxed again?
If not it is quite possible that she is still not at a good weight for her person. Some times just 1-2 kg more make the difference.
How are her blood results? Are there deficiecys? For example in zinc or B12? That can lead to chronical or altered ED behaviours.
https://www.ncbi.nlm.nih.gov/pubmed/2600063
https://www.drugs.com/health-guide/vitamin-b12-deficiency.html
Is she still restricting food (vegetarian or vegan diet for example)? Is it possible that her brain is still malnurished? Does she eat enough fats in her diet (at least 30% of daily intake should be fats, that is around 100 g a day for my d (19) which is a lot)?

Just some ideas to brainstorm. She seems to be still very occupied with ED thoughts and that is concerning.
Keep feeding. There is light at the end of the tunnel.
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tina72
Warriormum wrote:
Daughter talking about University too.


So this gives me some idea about her age.
My d is 19 now and at University since last October. She was about 1 year WR then, fear food list worked down and we had practised a lot of eating in the cafeteria there. She is there on half schedule (3 days in first semester and now 4 days in second) and still living at home (so eating at least 3 days with supervision here). We have a contract with strict rules and boudaries for ED and that works quite well here. No relapse since 2 1/2 half years now and still progress every week. Maintaining her weight (with some help) for 2 years now. 90% ED behaviour are gone but about 10% still there and we are working on that.

If you think about University think about a contract what you will do for her and what she needs to do for that and what will happen if she loses weight again. You are not helpless even if they are young adults as long as they are financially dependend from you. Use that.
Keep feeding. There is light at the end of the tunnel.
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debra18
The thing about cbt is it requires some sort of insight and motivation to change. The idea behind is it is that thoughts influence behaviors so they try to change the thought process. But for AN it can be difficult to engage them and effectiveness is limited. Does your daughter have interests? You mention you use a lot of distractions. I found that getting my daughter involved in a lot of activities has been the most helpful. Piano lessons have been great. Keeping her constantly busy. At this point can you focus on your daughter getting involved in lots of social activities?
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yellowcaty
Hi Warriormum

I’m no expert but just wanted to say that my daughter is WR? 7kg above what the unit first suggested and they still haven’t let up with the amount of food. She has been in IP for 13 months and still struggles every day with ED thoughts and anxiety. The one thing that does seem to be helping is psychotherapy. She couldn’t/ wouldn’t engage with CBT. It breaks my heart that she has been in IP for so long and I find it so hard to be a part of this forum as my failure at times seems to feel bigger when others have managed at home. It is no fault of anyone on here but it just feels so lonely when I have nothing to update. The one thing I am grateful for is that her unit never give up on her. 
I really just wanted to let you know that you are not alone xx
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Warriormum
Yellowcaty - thanks so much for your reply.
Please try not to blame yourself (as we all do but it’s not productive!). Every case is different and some just need IP. My daughter had to go in twice and I wouldn’t wish it on my worst enemy. Lots of trauma for patients and parents/carers that needs processing afterwards sadly. Be kind to yourself - sending a virtual hug.
Wishing you and your daughter all the very best and thanks for reaching outX

Everyone else too - thank you so much for your replies - very much appreciated.
Just to give a bit more background, my daughter received care along the Maudsley method to begin with at a unit. WR by the unit but nowhere near high enough. CAMHS took over and we had lots of family therapy, psychotherapy, CBT-E etc. whilst I provided and supervised all meals and snacks. Daughter couldn’t cope and just refused to eat one day resulting in another inpatient stay. This time the consultant agreed that weight needed to be higher following her toddler growth chart. She was discharged 2 and half years ago to CAMHS care and has had a mixture of psychotherapy and CBT every week since. I came across FBT through reading and so I implemented it myself (occasionally undermined by CAMHS). I am still providing all meals and snacks and supervision and I think weight is good. However, anorexia and possibly body dysmorphia is still very strong with a poor quality of life. She finds socialising very difficult as she is ‘grotesque’ and she has no hobbies really. She does a lot of art for her A levels and so that occupies some time. She has considered work/ voluntary work but she is so exhausted. She has tried Sertraline, Fluoxetine, Clomipramine,  Olanzapine and now Mirtazipine. Her mood isn’t too bad apart from the constant unhelpful thoughts (food/body related) getting her down and her thinking that she is beyond help.
Any further thoughts would be much appreciated please. She is now 17 and a half and about to be handed over to adult services😱😱😱! Is there anyone in the UK being supported by a FBT therapist please?
Hope I haven’t rambled too much and thanks once again.
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Ellesmum
I’m a bit unclear how long you think your daughter is WR after you found FBT and started feeding her, it might still be quite early days if I’m reading right, possibly she needs more weight. Tabitha Farrar has great videos about the horrible twilight world of hating being in a bigger body yet still plagued by ED thoughts. I found it incredibly helpful and educational.  You’ll find it on YT easily.

does she have her period? I wonder if she might benefit from something like art therapy.   Friends? I know you said she’s not up to socialising much but it would be good if she could see the odd film or have a coffee with someone from time to time.  Self esteem can sometimes be raised by being needed, any elder neighbours need a hand or a chat? 

Im very tired tonight but I’ll check in with you later, just wanted to show support x


Ellesmum
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tina72
Eva Musby can help you to find a FBT therapist in UK.
Or you can contact Dr. Sonia Bues on http://willowtreepsychology.com/fbt/

"She has considered work/ voluntary work but she is so exhausted."
My d is still feeling very exhausted at many days. AN is doing very much damage to the body and it needs a long time to repair that.

I would try to get her blood results to a perfect level. Here we saw a lot of deficiencies in zinc, magnesium, B vitamins, iron. B12 and zinc was down to a level that it was nearly not measurable any more. B12 had to be added by injections because it was so bad. That had the wonderful effect that her anxiety about everything was much better then and her cortisol level went back to normal within 4 weeks (and stayed there although in the mid of refeeding and the mid of A-levels - so many reasons for anxiety still there).
It was especially the iron level that needed to be doubled to make her feel more awake and more powerful. She is still adding zinc, magnesium, and iron 2 years in recovery as these things seems to disappear somehow in her body alhough she eats a very good variety of food. Our GP told us that often AN patients do not digest some parts of nutrition like they should and she might need to take supplements for many years or the rest of her life to keep that levels on optimum.
She is feeling much better since we do that. She can be up until 11 p.m. now (a year ago she went to bed at 9 like a primary school kid). She can be at University for 4 days now (infact 2 total and 2 half days) and walk around there without being totally exhausted in the evenings. She is still complaining about back pain now and then but even that is much better now (due to better magnesium level).

I know that I will maybe get attacked here again because there is no official scientific basis for that (only some articles in German) but here it worked and it is worth a try because you cannot do any harm with that unless you overgoe the recommended levels (which no GP will do).
And I think if it worked here it is at least worth a try. You have nothing to lose.
I do not know how it is in UK but here we had pay for most of the blood tests privat. But it was around 70-100 € in total so not too expensive. We check them twice a year and add what is needed.

" She finds socialising very difficult as she is ‘grotesque’ and she has no hobbies really."
We needed to drag our d a bit back into socialising and normal life as she did not really want to do that too. She also thought she is ugly and fat and nobody likes her.
I arranged some "playdates" for my then 17 year old d, arranged to meet friends by incidence in the mall, arranged friends to come over and just ring the bell so she could not send them away (and she never did). Going back to school and have some learning groups and after school events helped too. Is your d back to school?
Keep feeding. There is light at the end of the tunnel.
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Warriormum
Thank you Tina72, some great advice there. Bloods are done every 3 months here but they don’t routinely test B12 and zinc. I will investigate.
Yes, daughter is in school and that is going well. Socialising our of school is more difficult. She is so preoccupied with ED thoughts that she finds conversation impossible. Have tried all the other options like board games, films etc over the years but she is jaded with it all.
Thanks againx
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tina72
It is not routinely done here too, we are glad to have a GP that is a gastroenterologist too and he learned a lot about AN patients with us in the last 1,5 years. To be honest, here they do routinly only blood sugar and blood fat. No vitamin D, no calcium, no potassium, no nothing. You must insist on all here.

Is there something she could engage into where no conversation is needed? Maybe walk the neighbors dog or go to a retirement home and read the newspaper to old ladies? That could give her perhaps some self-esteem that she is "needed".

What about driving licence? My d was totally keen on driving and we paid her for eating with driving lessons and promised to buy a car when she maintains weight for 6 months (which she did). This car is now one of our best friends as it is clear that she can only drive when she has eaten (or she will be a danger to others with low blood sugar) and she knows that the car key would be the first thing she loses if she is not going with our contract...and she loves her car. 🙂 It is a great opportunity to give them some freedom with something not food related.
Keep feeding. There is light at the end of the tunnel.
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Warriormum
OK will do - many thanks. Bloods all booked.
Just learning to drive so those tips excellent.
Many thanks againX
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tina72
If you buy her a car make sure that the car runs on your name. This is often cheaper with insurance anyway and you have the right to decide who drives even when they are adult then. You can change that later at any time when they are ready.
Keep feeding. There is light at the end of the tunnel.
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