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

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tassie_star_5
I believe she's truly weight restored. Early days but at least 4 months of being WR. Olanzapine at night (low dose) but makes her groggy during day. The problem is things are getting much worse, not gradually better. I really feel, although we've fought so hard, that we need a higher level of care and support as most days are full of trauma. Further restriction, back to meals that last a ridiculous amount of time (we started dinner tonight at 6pm, we are half way through and it's 11pm), occasional food hiding, continued screaming insanity and emotional dysregulation as described in past posts.

Saw the hospital team last week who as usual have congratulated us on the WR but don't seem to hear that we are not coping and that she's mentally much worse..

 Being in Australia there are no options for residential care for kids who are WR but mentally very sick. The only way for us to get real support it seems is if she becomes medically unstable again then we start back where we started. I'll be quitting my much loved job this week as the stress is just too much for us all.

This just feels all too hard. No question really I guess but any advice would be appreciated.
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tina72
Hi,
no real help from me as I do not know your system there, just wanted to send a big hug.
I hope some Australians will be here soon for more help.
Are there FBT therapists in Australia?
You say you see more restriction and more time needed for meals and more food hiding again. Is it possible that she has grown (I do not remember her age right now)? What consequences do you set for this behaviour? Is fear food tackled already?
Keep feeding. There is light at the end of the tunnel.
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tassie_star_5
Thanks Tina. Yes she is doing FBT. She turned 14 yesterday - wasn't much of a celebration I'm afraid.

Unfortunately, try as we might, consequences or incentives just don't work. Nothing matters more to her than not eating. We have tackled some fear foods already but have been advised by CAMHS that due to the constant high level of distress that it's probably best to slow this down for now and just concentrate on getting her to eat. As mentioned she's now starting to reject even her safe foods.

Was measured last week but no real growth in height of late.....

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tina72
This all sounds as if ED is still very powerful in her. You say you are sure she is WR - according to what? Are you sure the professionals set target weights correct and are they aware that a 14 year old is not really WR ever until she is grown out? That she might need to overshoot the weight she had before ED moved in?
Just some ideas as her behaviour sounds very much like a still malnurished brain...is her fat intake about 30 % at least?
If cahms is afraid to touch her distress level that feeds ED. ED learns when I show stress with fear food they will leave it and I do not need to eat it...Refeeding without high distress level is simply not possible I fear. It is important to work that down so she can not start to restrict again. Any restriction allowed leads to more restriction...

It is really possible that she is around WR and what you see is part of extiction burst. That there are only a few more kilo needed to get her through that. That her body prepares a growth spurt or a spurt in female development. Is periods back already?
Keep feeding. There is light at the end of the tunnel.
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Ronson
How long have things been getting worse ?  We had a period of heightened anxiety and stress at weight restored.  we have also gone weight restored plus - by about 4kg and it seems to have really helped.  It is so hard - have you followed through on the consequences.  My d often said that she didnt care but after a few hours she did.  We also on our worst day had a neighbour round to help her eat - we literally could not take it anymore so the neighbour came and played cards with her and eventually she ate.  I think at that point d realised that I would let people see the horror in our home if it would help.   It is so hard though - we also felt we needed inpatient but they wouldn’t take d as she was physically ok.   You do have an inner strength that will help that you don’t believe you have xx 
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tassie_star_5
Thanks again, Tina. She is 7kg above the professionals estimate. She is well above her historical growth curve.
Lots of fats in her diet. She has now had 4 periods in a row. We'll keep pushing......
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tina72
Thanks again, Tina. She is 7kg above the professionals estimate. She is well above her historical growth curve.
Lots of fats in her diet. She has now had 4 periods in a row. We'll keep pushing......


All you do sounds perfectly right. Maybe ED needs to see that you will tackle fear food as well. Maybe it is just a question of more time. It needs at least 4-6 months to see slow recovery signs. Some need to be 6-12 months wr. Not what you want to hear, I know. Try to stay strict with rules and boundaries. 5 hours for dinner is really not acceptable!
Keep feeding. There is light at the end of the tunnel.
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tassie_star_5
Thank you Ronson, appreciate your reply. Things have been deteriorating rapidly for the last few weeks. It used to be unpredictable but now it's consistently awful. Thanks for the suggestion of getting outsiders involved. Anything at all is worth a try. We do follow through on consequences but honestly it makes little difference.
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Ronson
It is so hard - it could be an extinction burst that you have to push through but it is very difficult with little support.  An outside person at a meal may help.  
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tina72
I agree with Ronson, some eat better with "witnesses" as they do not want others to think they are not "normal". Worth a try. Also worth to ask some family members like grandparents to eat with you regularly if it works.
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
This was us 6-7 years ago. D mentally terribly unwell but at a healthy weight, and body apparently functioning normally. The resistance to weight gain in my D's case had been extreme throughout at home we could only manage 1kg per month, and that was after 18 months of just losses at home (she gained in hospital). We did back off from the high anxiety stuff - the goal was to keep 100% nutrition 100% of the time. If she was too challenged, she would not eat at all. To be honest we just kept on ploughing forward and waited it out. It did slowly but surely get better but i took a long long time. I think your D is not using other medications like SSRI's? My D found these enormously helpful in the end after being very resistant. She also spent a lot of time with a therapist, learning how to manage her anxiety in more helpful and constructive ways than not eating. Is there a possibility of seeing a separate therapist for her at this point? I know that many of the FBT teams seem to work hard at not using other therapists, however true FBT as per manual by my understanding does not necessarily exclude it. 
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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kazi67
Hi
I have No advice really just sorry it’s so hard for you atm
our d in the past year spent 3 months IP and 3 months OP recently discharged and we still have days of emotional disregulation, crying, delusional conversations, a few self harm incidents, followed by days of “shes back to her old self”
we try calming meditation  music, deep breathing, massage and me just trying to be compassionate and understanding to her concerns (my d claims whilst in this state she doesn’t understand life or her place in the world blah blah blah it goes on and on)

i say we just have to keep pushing through
i ask her hasnt  anorexia taken enough???
I ask do you want to go back to hospital?

on nights where she’s been the worst (last night for eg) 
this morn she had woken up as normal 
happy and bubbly, it’s a crazy journey! 😢
You just have to keep pushing through, distraction, distraction! It’s so bloody hard ☹️

we have 2 puppies which help immensely 🐶🐶❤️
did have a kitten too who was an angel sent from heaven (unfortunately he was hit by a car 😢)

keep going it’s hell but worth it in the end 
big hugs❤️
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tassie_star_5
Thank you Foodsupport and happy Mothers Day 😊

I have been resisting doing it  due to her already having a team at CAMHS but I think I will put my daughter on the waiting list to see the one private psychologist in my state who seems to have very up-to-date training in FBT and offers DBT etc. I do think we need more than what CAMHS can offer us.

Like you faced with your D, pushing too hard around fear food etc just means that she flat out refuses to eat. Just a bit scary that she is starting to restrict so many foods that she's been ok with. Last night we didn't get to bed til 2am due to a Mexican standoff over a meal she's been eating very regularly since being discharged from hospital (5 months ago). We are prepared to sit it out (despite the trauma) as we are terrified that backing down and giving the anorexia an inch will ultimately makes things worse.

I will mention SSRIs to Ds team and see what they think. She is highly resistant to taking the Olanzapine and there is conflict around this. She's now claiming that we are trying to sedate her in order to control her. She even suggested last night that we are running a cult and engaging in mind control 🙄 Anything at this stage is worth a shot though. The meds I mean, not starting a cult 😉. 
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tassie_star_5
Ah, Kazi67, thank you so much. Spoken like a true warrior mum.

Thanks for making me feel not so alone. Greatly appreciated. Our dear old dog has been an absolute life saver around here. He has seriously made such a huge difference and joins us in sitting it out when things get crazy. He's the only one she lets near when she's off the show.

So very sorry to hear about the kitten. Devastating. 

I'll heed your wise words and keep pushing on. Thanks again for your care and support xo
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Ronson
SSRI has been a huge help here too.  Well done on seeing through with your meals - it’s tough - but it really helps if you can see it through.  And we also used safe foods to get a lot of the weight on 
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tassie_star_5
Thanks Ronson. Really interesting to hear about the SSRI and your D.

My middle non ED D (young adult) is on Fluoxetine for depression/anxiety. She feels that it definitely helps with the depression but often feels a spike in her anxiety which she believes is a result of the meds. For her, the benefits of having the depression controlled outweigh the need to cope with some anxiety spikes.

My concern is that it may increase anxiety in my already anxious ED D?? We don't need that. I guess with everything it's trial and error. Was just concerned that being sisters it might affect them similarly?
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