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

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cwebster
14 year old son with AN. Has been hospitalized April to December 2019-home for 6 weeks then back in different hospital for food refusal x 1 month. Rigid. Can be very defiant at times-verbal and physical. At the table he will blatantly hid, smear, crumble or throw food as well as spit it back up. Has missed 4 meals in 6 weeks, eating 3 meals, 3 snacks but I am struggling to change it up as sooooo rigid. Takes ensure regular for replacement - not necessarily calorie equivalent ...history if purging. Only carrot is his devices....have removed but causes huge escalation of behaviour. Any suggestions on how to manage behaviours...will not take any ensure replacement..
We are exhausted, anxious and burning out. Hard on my other 2 kids and husband...any suggestions welcome. 3 years into this disease with no end in sight😢
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Enn

Hello I do recall your story. I hope they were able to get his weight up to at least WR while in hospital. 
More weight may be an issue and may not be. If you give him regular ensure can you pour in a glass and add in some whipping cream? What does he eat and not spit up? Some have fed them up on safe foods for a long time, then added in other foods slowly. Could you add a teaspoon of a different food to one meal per day and as he gets used to it you add more and different foods? 
For the at the table behaviours: can you replate what he spits or crumbles? Some have resorted to soups but he could spill. I recall deenl’s son tried to hide food in pockets and pants and they had to pat him down after every meal. Like at the hospital no long sleeves no pockets, no hoodies no animals to eat the food etc..


When my d got violent we sent her to her room . She was 12 ,younger than your son. 

Is he on meds? Have they helped and/or does he need an adjustment?

I can understand you all feeling so burnt out. You have been through so much. I am glad he is home and hope you have a good team on the ground that supports your efforts to feed him. 

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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cwebster
Yes on olanzapine 3x per day and prozac as well as Ativan as needed....
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KLB
We are 20 months in with our 16 year old son and have had to refeed almost entirely on safe foods. It’s really only in the last few months that we’ve managed to expand a little (very little) on variety. We’re not fully weight restored yet but it was the only way we could get him eating (we have had the added complications of exercise compulsion too though). If that’s what you need to do that’s ok. Yes, it’s probably better to introduce variety as early as possible but more importantly is that he actually eats and doesn’t lose weight so if you can only do that with safe foods for now then so be it. There is no one right way to do this, only the way that works for your son and your family.
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LaraB

I am so sorry that you are having such a difficult time and that you have been through so much already. I don’t know if any of the following ideas will be anyway useful as I know you will have tried lots of things already. Please totally ignore them if no good. 

I wonder would it be worth considering your
other kids eating separately to try to keep them away from the stress of mealtime. I would like to have done more of this to reduce the impact on siblings.

Burnout is not good. I wrote about experiencing that on this forum once before and someone advised me that is dangerous. I remember that lesson. I have learnt that if burning out I need to take action. Options include medication for yourself, counselling, talking to someone, walking, time for self-care. Whatever would work for you but you need a plan. 

In terms of strategies when stuck, I have struggled with this. Eva Musby has written about compassionate persistence which might be useful to have a look at. I found it a useful concept to keep in mind. She called it something more than confiscating phones. 

min the past when we have had violence, I have repeated violence is never acceptable and got my H to do so too. I have shared with the clinical team so they can support with addressing this. 

Others have advised me to keep talking about the future and not let my D give up her dreams. 

Other strategies I have tried include writing to my D or texting her. Including telling her I will always love her no matter what. 

take care. X

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cwebster
Thanks for the suggestions. Rigidity is so hard-I am ok with safe foods yet need to find ways to increase. He is not WR-we have managed to get 5 kg on him in last 6 weeks. Likely >10 kg + until we reach WR—lost 9 kg as inpatient last summer. It has been horrible. Honestly he eats with our support but not as a family as too anxiety provoking for everyone. Right or wrong this is what we have to do for now. School work on line is his form of distraction...he spends an enormous amount of time..his focus is better but not optimal...
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LaraB

Do you mean strategies to increase intake? Would it be worth saying here what he currently eats and then people might have ideas about how to make more energy dense? It sounds good that he has a routine if 3 meals and 3 snacks that you can build on.

I did things like increase couscous by 5 g a day/ gradually increase pasta similarly in very small unnoticeable steps. My D liked an orange vegetable pasta sauce which I added cream, ground almonds, rapeseed oil too etc.

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cwebster
He is eating 3 meals, 3 snacks-bagel/toast/waffle or cereal in morning-only wants butter on bread (no Pb, cream cheese), yogurt, fruit both fresh and fruit cup or apple sauce, milk, juice (of recent not taking), grilled cheese or BLT at lunch with veg/dip and 2 cookies, milk, kind or sweet and salty bars, chicken nuggets (will only take 4) at dinner, hit or miss baked potato with butter and chicken. Hard to increase or hide nutrition due to rigidity. Behaviours of spitting out food...can usually convince to put back in mouth, and smearing/leaving on upper lip, hiding....exhausting! Sometimes leaves table..have to pull back. Unpredictable-nothing mechanical at this point as needs lots of encouragement-try to distract with word games etc 
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Foodsupport_AUS
cwebster wrote:
Thanks for the suggestions. Rigidity is so hard-I am ok with safe foods yet need to find ways to increase. He is not WR-we have managed to get 5 kg on him in last 6 weeks. Likely >10 kg + until we reach WR—lost 9 kg as inpatient last summer. It has been horrible. Honestly he eats with our support but not as a family as too anxiety provoking for everyone. Right or wrong this is what we have to do for now. School work on line is his form of distraction...he spends an enormous amount of time..his focus is better but not optimal...


You must be doing something right if he has gained 5kg in six weeks. Great effort. Continuing with the safe foods can work for many, it certainly did for us. 

Have you considered options for helping him comply of rewarding him back in some way. It sounds as though things that motivate him are school work, IT toys etc. So he could earn points towards new games/ devices for completing meals well. You could consider a new routine of all devices removed at the start of each meal and they need to be "earned" back with - no violence, no leaving the table, no smearing, spitting etc.. Other things that can work is meal distraction such as TV, stories, verbal games - they stop every time he engages in the behaviours and restart when he doesn't . 
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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cwebster
I take devices away at night and do not give back until breakfast complete. If any refusal devices are removed for a period of time-such as 3 meals/snacks complete in a row or 24 hours depending on behaviour (one time in last month he throw food, refused and ran away for 1 hour). The challenging piece is to be consistent as this disease thrives on manipulation and inconsistency....so hard not to be reactive with his behaviours!
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LaraB

For what it’s worth with food:
sliced bread for toast. Can you get the biggest slice possible. Worth checking in supermarket as they vary a lot. 

i added cream to whole milk- already in bottle in fridge. No difference in taste. 
can you serve yoghurt in bowl rather than pot as easy to add double cream. 

maybe you could try adding rapeseed oil to apple sauce. 

I found I needed to try to introduce a sauce to enable me get more energy in as D would not take smoothie. 

But 5 kg in 6 weeks is miles better than anything I managed so well- impressed here too. Xx

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cwebster
Thanks for the suggestions. Weight up but we were 5 kg higher than this 1 year ago! A roller coaster-WR a moving target and so far away ...more importantly his state of mind is so entrenched in this disease!
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LaraB

So hard but you are going in right direction now weight wise. It must have been horrific last year. I am sorry for all you have been through. 

Sending you heaps of good wishes and positive vibes to keep going one meal at a time. 

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Torie
5 kg in 6 weeks is awesome!  (Also exhausting, I'm sure)

Keep up the good work! xx

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