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

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smileymum

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Reply with quote  #1 
Hi all
Firstly, I've had so much great help here when I've asked before. The super-resistor threads were also amazing and gave me the confidence to tweak things.   I'm now hoping for some ideas to move things along and wonder if any of you amazing people can help....

So my 17 year old w/r daughter has been out of IP nearly 4 months. Was eating everything, started restricting variety and refusing evening meals about 8 weeks ago. Otherwise, not resistant and lots of calories going in thanks to adding oil to stuff. Early on in trying to change this around, we had much more success with a calm expectation route than anything more overt as this just resulted in shutdown. LSUYE also didn't work and she doesn't do reward/punishment as again she just shut down, do without and lose  motivation. Her evening meal is a lot of fruit, fruit juice with oil in and usually something on the side like crisps or French fries and she seems to really struggle with this meal in particular.

So the issue is, except for soup, she won't eat anything requiring utensils. All finger foods: she will eat pizza, any bread stuffs, garlic bread, french fries, chocolate, chips, cheese, milky stuff, cereals, smoothies and in a wrap we can add chicken goujons, curry or a chilli. I get these are usually fear foods so I am thankful this is the case but realise we have to move beyond her fear of an actual knife and fork meal. There is no purging or over-exercise stuff and she has stopped s/h. I have to say the tweaking of the 'traditional' approach that I learned on this forum has helped get us this far; she is back at college, has friends, joined a rugby team and helps out at an animal shelter. Anxiety, ED and intrusive thoughts are still very much in the picture but more interest in life is certainly helping to manage these and maintain her eating.  We have booked to go to Uganda next year on a charity trip which she is so excited about. I have said: do we want to be bringing the ED with us? And she has agreed in principal that it is probably not an easy place to manage something like this. Hoping this will provide some motivation to move forward as a result.


Quick background: We decided to balance food intake with life as she has been out of life for so long due to chronic fatigue, which led to suicide attempt, s/h, 2 hospitalisations and ED. CAMHS have suggested emerging BPD. I'm not so sure as she doesn't act out and hates confrontation. However, there is definitley something more going on than ED. 

Sorry for long post and thanks for any input. You are all awesome and I have learned so much already. Here's to keeping on learning....

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tina72

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Reply with quote  #2 
So my idea is that she seems to be frightened to even touch a fork or a spoon or a knife so I would first work on that.
Can you ask her to help you to set the table and put a fork and a knife for YOU on the table? So she needs to touch it without eating with it?
Can you ask her to feed YOU with a spoon as a joke? Kind of "I have dirty fingers, can you give me a spoonful of that sauce to try if it has enough salt in it?"
Do you have a cat or a dog that needs to be fed and do you have a spoon for that?

Then I would start with a small spoon to make her eat some really small portion with that. Then increasing portion slowly. Then a bigger spoon. When she is used to the spoon introduce a tiny fork. Then a bigger one and so on.
Just like fear food but now "fear materials".

Tina72


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Foodsupport_AUS

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Reply with quote  #3 
Was there something that seemed to bring around this new form of restriction? From what you are saying she was eating with utensils up  until 8 weeks ago?

Firstly I would suggest that traveling overseas with a child who is very active in their eating disorder  may well be a recipe for disaster. New foods, new time zones, different situations are ways that things can really get set  off. It works much better if you can move your food home rituals with you. This means her current issues may well mean the trip just can't happen unless you can overcome these issues. If the trip is working as a motivation then perhaps talk about how you are willing to cancel this trip if there are not dramatic changes in what is happening - have clear expectations such as able to eat meals with knife and fork or spoon. Able to eat increased variety of foods. Able to eat at random restaurants of your choosing. 

You could set it up in the same way fear food laddering is set up but personalised to what you need. She can work out what things she finds most scary and as suggested you start out small but as time goes on the challenges get bigger. 



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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.
Torie

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Reply with quote  #4 
What FoodSupport said.  And I like Tina's ideas about laddering.

Also, it sounds like your d may likely need to gain more weight.  It sounds like ED is still pretty strong.

Congratulations on all the progress you have made!  It's a tough journey. xx

-Torie

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Torie

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Reply with quote  #5 
Quote:
Originally Posted by smileymum
So the issue is, except for soup, she won't eat anything requiring utensils.


I just noticed that sentence.  Do you have any idea why soup is an exception? xx

-Torie

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tina72

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Reply with quote  #6 
"We have booked to go to Uganda next year on a charity trip which she is so excited about."

Like Foodsupport said, holiday trips are very difficult at the beginning and I would suggest you really rethink that or have it cancelled easily.
I do not really know at what state your d is, but 6 months after IP our first 3 day holiday trip (only 200 km away) was very stressy and now 1,5 years after IP that was totally different but I still was happy to be able to go back home within a few hours. And we had no time change or hotel food or something like that but a campervan with kitchen and "our" food on board 24/7.

So I do really not know if that is a good idea, too.
Tina72

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smileymum

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Reply with quote  #7 

Thanks Foodsupport_AUS and tina72 for your replies - helpful to think about.


I'm not sure anything particular happened 8 weeks ago except perhaps the honeymoon period of being home after the unit was over and she was facing into life which she wants badly after years of not being able to particpate but which also causes anxiety.

I get the risk with the trip and it is a risk but it seems to have worked better for her to plan a bolder life and then to use food to support the life she wants. Since she has been restricting variety we have been able to up the calories because she is doing more. The trip isn't until late June next year and so I am hoping to move forward considerably in this time.  She has tended to eat better in front of others and this is a communal trip (18 of us) but I have no problems telling her that if I see concering issues there, we're on a plane home. And I would see it through.

Tina, she does empty and load the dishwasher so I'm not sure if she is afraid of the utensils themselves but only within the context of using them to eat. However, small spoon, small amounts is worth trying to begin and I need to be much more consistent in exposing her to this every meal.  If I can, I will get her to ladder but she usually doesn't want to enter into these discussions and so I may just choose what I feel I need to introduce slowly but consistently.

Thank you. I need to be bolder with variety and more consistent...


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tina72

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Reply with quote  #8 
So if she is really fond of going on that trip you might use that as incentive. You could say "we need to practise eating with others or in a restaurant for Africa and you cannot eat with fingers there".
Does she only eat soup with the spoon or would she use it also when there are little noodles or rice in that soup? Can you increase noodles in the soup up to noodles with sauce (do you know what I mean?) to get her to eat noodles with a spoon? Then rice and other food? It would be helpful to re-introduce the spoon first because she already uses it.

I think it is good that she already touches it and you do not need to work on that, first.

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smileymum

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Reply with quote  #9 

Torie, thanks. All of you responders are amazing in how much you help and support others. I'm really touched...

Why soup was OK? I think i was able to put it in a large cup so she could drink it but the spoon worked better in the ends with it because it was chunky. But you have given me an idea - I might serve pasta (which she used to love) in the big comfortable cup with a spoon (all the same utensils just a different meal inside) to begin. Thanks!

re: holidays: not long out of the unit we went for a holiday 1.5 hours away and it went well, she wanted to eat so she could go in the sea etc. I wouldn't any anticpate extra problems if we were going for a short holiday tomorrow either. The bigger, exciting stuff she tends to handle well. The day-to-day routine of life is sometimes more challenging.

So for her, going to Africa is likely to excite her, her friends are going and she has a function there with a music thing so I am imagining she will overcome food anxiety to eat broadly appropriately (though I don't want to leave this to chance obviously.) In fact going into college every day and facing a room full of people is harder than going to Uganda for her.

But, I'm going to be much more explicit about expectations: we need to be able to xxxxxx when we go to Uganda so we need to practice now.
Thanks x



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tina72

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Reply with quote  #10 
"But you have given me an idea - I might serve pasta (which she used to love) in the big comfortable cup with a spoon (all the same utensils just a different meal inside) to begin."
That sounds like a really good idea! Take something as much soup-like as possible to start with!

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Hibiscus

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Reply with quote  #11 
Hi smileymum,
Thinking about the dinner refusal.
My d used to melt down more often at dinner time. On my insistence she showers before dinner. I covered to lower half of all mirrors in bathroom ( or bedroom if nec) so that all we can see is our faces. Helped my d not be confronted by ‘fat’ body.
Don’t know if this is relevant for your d. Lots if great advice already
melstevUK

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Reply with quote  #12 
smileymum,

There are so many positives and indications that everything is going in the right direction - absolutely fantastic news and well done to you all.

There are so many weird ways in which ed behaviours present and you sound to be really aware what is going on and have got great ideas on how to move things forward.

In terms of the trip to Uganda - I think the important thing and also difficult thing will be keeping d's nutritional uptake going during that time but I really think it is worth her going and will be a great incentive for learning, not so much in terms of to eat 'properly' with a knife or fork, (even you know it needs to happen) but in terms of being able to adapt to different food and different settings and with other people.  I don't know how long you are going for but a lot could happen in a month to let her slip backwards so you need to be really confident that she can adapt when you are away.

The thing I feel really infuriated with is that expression 'emerging BPD'. Take that comment with a pinch of salt - I am hearing and seeing talk of 'personality disorders' in so many places and instances in the UK - and they are nearly all used when eating disorders patients appear to be a bit more difficult to treat.  I think it is a really lazy and easy way out and in a subtle way puts the problem with the patient and not with the treatment team.  We know that there are many comorbids which present along with eating disorders - but one of the things which is being ignored is just how difficult our society is now to grow up and mature in at present and it is bad practice to talk about there being a personality disorder when there is an active eating disorder present, but also when a patient is so young.  The personality does not form properly until the brain has stopped growing and there are many young people who can be really quite unstable during their teens and early twenties because along with that period of development is a huge risk-taking period which is part of adolescence.  So with all the hormonal and development changes going on, I really think that talk of personality disorders is ridiculous - and at some stage I intend writing to the Royal College of Psychistrists to express my concern.  They probably won't take any notice but I have nothing to lose.  

For any young person now - one of the major issues to be dealt with in any area of life is 'self-regulation'.  Young people have to learn to self-regulate emotiions and behaviour if they are going to hold things together and get a life and job together.  I am 62 and had my teen years mainly in the 70s. 

This is how it was and this is how it is now (in the UK):

TV came on at noon and went off at midnight - so there was no TV or screen to watch outside that 12 hour slot.  The came video recorders and 24 hour TV so already there was a huge change and using TV to keep my d entertained while I did other things was helpful - but getting her to turn it off and get ready for school in the morning caused endless battles.  (Maybe I shoiuld never have let her have it on in the first place) .   And look how many people now 'binge' with Netflix  or box sets - my very recovered d does this and I keep telling her that watching endless hours of series is not good for her mental health and that she  should have a break and get outside.  But the temptation is great and she works hard during the week and likes to reward herself this way.  

Pubs closed at eleven at night - and we had very little money to go out drinking.  Look at young people now - they have more available income and bars are open until four in the morning very night in the week.  Young people often drink heavily at home and then go out and drink even more.  They do it because they can - not because there is any deep psychological need or drive to do it.  Drinking is possible and available.  No limits set on it.  If we wanted to extend the evening we went to a discotheque and more often it was to dance and not to continue drinking.

Social media is addictive and I personallhy am totally behind with Instagram and only use FB.  Yes it is fantastic for finding old friends, seeing what friends are doing all over the globe, but I can take it or leave it.  For young people this is going to be so much harder to do - and if you are not up in the popularity stakes I can imagine it makes life hard going.

Food and food programmes are everywhere on TV.  Food is relatively cheap compared to how it was in the 50s and the variety makes it easy to binge and overeat, hence so much obesity.  We may know exactly what we need to eat and young people have messages about healthy eating rammed down their throats while having adverts on TV for food and chocolate at supermarket aisles under their noses at the same time.  Being bombarded like this definitely takes its toll and causes guilt and anxiety - I don't think I heard of a calorie until I was well into my twenties. 

Designer clothing only really took off in the 80s when manufacturing became cheaper and advertising pushed brands big time.  Until then you thought you were being the height of fashion if you could buy a dress in Miss Selfridge.  All these expensive ranges were not even in the shops for most people - so pressure to buy and the advertising which causes dissatisfaction adds another complexity and an area to negotiate and compare yourself to others.

Life for me felt simple - my friends either got a job (the type that don't exist much like secretarial work in places such as estate agents) or others went to university with no threat of huge loans hanging over them afterwards.

No wonder there is so much stress around - which definitely impacts on the brain as an organic whole.  

We as parents have to help our children negotiate all these areas and we can do a lot without the help of psychiatrists - if we only understand the complexities of the society in which we now live in, where the stresses are, but can encourage our children to find dreams and  reassure them that difficulties can be overcome and that it will get easier as they get older.

These are tender years with a lot of learning required and also a lot of support - and we also need to have confidence as parents that we can steer our children through them.

Big rant over!  



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smileymum

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Reply with quote  #13 

Sorry for the delay in thanking you all for your help and comments. But: a big THANK YOU. I might not always agree with all suggestions but even so, your support, ideas and feedback are helpful and empowering. I am so grateful to get some different perspectives from people who have been there.  Through this I have regained strength enough to try to dig back in and keep challenging the ED.

MelstevUK - I am SO with you. I was furious with the emerging BPD diagnosis and have stated so in person and in writing to CAMHS, listing about 8 points as to why it is unhelpful, unwelcome and likely incorrect.  I don't agree with it, my sister-in-law (a Psychologist who delivers DBT for BPD in adults) also thinks it's unlikely. D apparently seems less bothered by it and has apparently indicated to them it might be a good fit. I have told d that's really not how she presents to me or my psychologist sister, nor the team in her last ED unit who saw her every day for 3 months and who deal with complex ED. So, I have encouraged d to hold onto it very lightly indeed.  Thank you for your support in this. Spot on: )  If she has BPD, let it be diagnosed properly and get the evidence-based treatment to help. Neither of which has been offered. It feels like there is a check-sheet their side where they have to account for why a kid might still be on their books 2 years down the line seemingly unrecovered. For emerging BPD, read: untreatable, not our fault. 

Also, thanks for your thoughts on the other stuff our kids have to navigate these days. I'm in my late forties and maybe it is my imagination but I do think life was much simpler. At the very least you could develop a little 'under the radar' without the endless scrutiny of school expectations and extreme social expectations due to social media/TV/internet.

Quick food update. No real breakthroughs in terms of hand-held food but perhaps 2 tiny wins this week. Outside of eating I have been saying things like: I love you too much to let you be controlled by this. You didn't fight to get over chronic fatigue to be enslaved by something else. I'm going to fight for you to be free of ED.  It's time to push through some of the ED stuff as there is no way round it, only through it etc. (She knows she is still has an ED, doesn't deny it.) and although she has been quiet in response, i feel like she has been taking it in. We had plenty of 'I love you's' this week (though she's never been overtly resistant/rude/acting out) and I think I'm seeing a bit less flatness of mood as we taper down the olanzapine. So, the tiny wins:

'Mum...can I have chilli without the wrap? ' me: 'Yes, but you need the wrap on the side so you get enough energy in'. As a result, she had to use a spoon to eat the chilli and had the wrap separately. Small win, I think.

Part of her usual packed lunch is a dry croissant (big, made with egg) with 38g cheese on side. She always picks at the croissant in a classic ED way. Me this week: 'Getting bored of croissants? ' D: 'yes.  could I just have a sandwich?'  So made her a cheese sandwich. She ate it without picking. Small win re: having cheese inside the sandwich and eating without picking.

She is still struggling to eat a normal evening meal but I'm working on what I can and I  think she is sending me little cues that sometimes she is ready to try and push at least a little, where she can.  Also hoping that as she gets quite a lot of fats in and enough calories, this will help in time with brain healing and flexibility.

Even so, can't let up on this thing for a minute. Thanks again all and I am still open for other suggestions if you have any other thoughts. Hope I can pay back in time in the way you guys have on this forum
xx


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Smileymum
scaredmom

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Reply with quote  #14 
Quote:
Originally Posted by smileymum

 So, the tiny wins:

'Mum...can I have chilli without the wrap? ' me: 'Yes, but you need the wrap on the side so you get enough energy in'. As a result, she had to use a spoon to eat the chilli and had the wrap separately. Small win, I think.

Part of her usual packed lunch is a dry croissant (big, made with egg) with 38g cheese on side. She always picks at the croissant in a classic ED way. Me this week: 'Getting bored of croissants? ' D: 'yes.  could I just have a sandwich?'  So made her a cheese sandwich. She ate it without picking. Small win re: having cheese inside the sandwich and eating without picking.



I would like to disagree with you,these are BIG wins and not tiny. Please enjoy/savour these moments. They are hard won and worth reflection and celebration!

XXX


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Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Torie

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Reply with quote  #15 
Quote:
Originally Posted by smileymum
I am still open for other suggestions if you have any other thoughts.


In my experience, what matters most - by far - is getting the weight back up.  My d mostly ate with her hands, kind of like a cave person, I thought.  She would pick up her meat and eat it with her hands, and she also ate most everything else this way, too.  What worried me most about this was the potential for for being ostracized by friends / peers for her shocking lack of table manners, but somehow they were able to ignore this.  As her brain healed, she gradually resumed normal table habits.

So, again, I would focus on getting her weight up asap with the hope that the table manners will resolve as or after the weight has been regained. xx

-Torie

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Kali

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Reply with quote  #16 
Hi Smileymum,

At my daughter's sickest, there was also a therapist who also suggested that she ticked many of the boxes for BPD. After being at a better weight for awhile and retuning to school, however, it seems clear that she does not suffer from BPD nor has it ever been mentioned by any of the professionals again. 

I started thinking about Ethiopian Cuisine after reading your post. We have a couple of Ethiopian Restaurants near us and you eat with your hands and don't use utensils. Their dinners consist of different stew like foods which are placed on a round platter on top of injira bread, a spongy soft flat bread almost like a thin crepe. You rip off a little bread, put some stew inside it and eat, then repeat. There are dinners like Chicken or lamb stew, curried vegetable stews, pumpkin simmered in tomatoes, and lentil stew and yellow split peas cooked with different spice mixtures, and they are really good. So it made me think that perhaps you can have your daughter eat things like stews and pick them up with some sort of crepe/thin bread, kind of wrapping the food inside and taking bites like that. I wonder if this behavior about utensils will fall away when she has been weight restored for awhile however it is a challenge to feed her if she is having trouble using utensils. But the important thing is that the food goes in. When she ate the chili she did use her spoon; perhaps feeding her foods which are difficult to eat without the utensils (but able to be eaten with a crepe or wrap to pick them up) and then seeing if she uses the spoon again might be worth trying?

warmly,

Kali



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Reply with quote  #17 
Hi Smileymum

My d used to eat everything with her hands, EVERYTHING! One day I made mashed potatoes and she ate it with her fingers, I didn't serve mashed potatoes for a vey long time after that.

I asked her why and she said because food tasted better when she ate with her fingers and when I thought about it, it rang true for me. If given the choice I would also eat pizza with my hands rather than cutting it up, because it tasted better. So I think this is a symptom that she is not getting in enough food. The men in the Minnesota semi starvation experiment also developed strange eating habits.

In your d's case I would continue feeding her and see what else you can squeeze into a wrap. In all probability she needs more calories. It could be that when she came home she wasn't eating the same as IP and her weight dropped or she had a growth spurt or her metabolism shot up, who knows.

When you think she is getting better weight and state wise, you can just ask her to start eating food with utensils. My d started with a fork and her table manners improved quickly.

Best of luck!

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
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