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

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Seashell Show full post »
Seashell
So my daughter ate a meal with the nurse in the house (afterwards she said only because she didn't want to go back to hospital). With me.... nothing. She sat at the table. I was calm and firm, I quoted endlessly from Eva Musby. She was calm just said I'm not eating it. After an hour I took food away and presented Fortisep like they did in hospital (but of course I don't have the tube to threaten). After 30 mins I followed through on consequences we had discussed with ED nurse during home visit. WIFI going off and laptop being taken away. Nothing. After another 2 hours we went to bed.

For someone who would rather be dead than eat what can you do to get them to eat? 

They are talking about ITP at Maudsley Hospital. Any experience of this?
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ValentinaGermania
So if she is refusing to eat with you she will need a higher level of care and she might need to go to hospital to get started.
Maudsley Hospital is normally a good adress but I do not know it personally. I hope someone with experiences on that will be here soon.

Tina72
Keep feeding. There is light at the end of the tunnel.
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Seashell
Neighbour a good idea for us. I’m just researching private ED nurses...
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Kali
Hi Seashell,

The maudsley has a good reputation, if your daughter is being offered help by them that is positive. I'm sure some other parents who have lived experience of their program will be along to tell you about it.

If there is food refusal then it sounds as though she may need a higher level of care for awhile. 

Sorry it is so difficult right now.

Kali




Food=Love
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Mamaroo
My d was a bit like that, would not take a bite, so I lowered my expectations. I told her to eat as much or as little as she could managed, but that she needed to take at least one bite. It took a couple of minutes of persuation, but she took one bite, I encourage her to take another until at bite no 3, she couldn't eat any more. Then I gave her the incentive. At the next meal I told her the same thing, she could eat as much or as little as she could manage, but she needed to take at least one bite and if she wanted an incentive it needed to be more than the previous meal. So she took 5 bites. This went on for several weeks, gradually she was able to increase the amount she had until after 7 weeks she was able to follow the meal plan (in our case having 6 ensures, she was not eating food).

Another thing you could do is presenting the meal for only 30 minutes. I could usually tell after 5 minutes whether she could eat or not. After 30 min present the fortisep and if she hasn't finished that in 30 min, send her to her room for bedrest, no tv. Go and do something else, like take a walk/ bath, read a book, scream into your pillow and then after 30 minutes bring the meal to your d again. Rinse and repeat.

Good luck, the first bite is the hardest 🤗🤗🤗🤗
D became obsessed with exercise at age 9 and 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. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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debra18
Did you speak to Eva Musby? She does online coaching. She might be able to help you with the techniques to get your daughter to eat.
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Warrior1
So my daughter ate a meal with the nurse in the house (afterwards she said only because she didn't want to go back to hospital).

I see some positives here! She ate a meal yay! She is capable of eating a meal! Can you use hospital as motivation to eat. I would often say to my D that if you don’t eat this, I will need to take you back to hospital and that would be a shame because you wouldn’t be able to do xyz!

From the rest of your post I really think you have the right approach, Keep trying different incentives, consequences, direct prompts and something might just click. I used to say to my D, just start with one bite. She used to then say, do I only have to have one bite?, I would then repeat, just start with one bite. It seemed to work really well once I got the first bite in I could keep the pressure on and the next ones were easier. You could try something like that! Xx
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Nicstar4
How are you going seashell?
Warrior1 I love the line, just start with one bite. I am
Going to use that too!
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Seashell
She said she ate 4 spoons humus from fridge and seemed quite distressed and went on and on about it so I think she probably did. No supper.

Thx for your stories about single bites etc. Makes me feel better and it worth carrying on. I know I am the only thing that can bring about recovery. The burden of responsibility seems overwhelming....
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Nicstar4
Seashell I think everyone here has felt the burden of responsibility. In nearly every other illness/ disease process a family is told what to do. Here’ it is up to us, to decide, direct and ask for the direction we believe it should go in. (Or sadly, for some be led in the wrong direction!)The only comfort I take in all this is that it becomes a truly individualized program at some point, for each family, which is better than any other medical model in the end, although a painful process!!
Hang in there.
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Enn
Hi Seashell,
It takes time and trial and error for us as parents to figure out that we need to change how we parent. At least that is what happened to me. I found that all decisions regarding food were mine alone. D “just” had to eat.
You say she SAID she had spoons of humuus. I do recommend you supervise all meals and snacks.
Do you need support for that part? I know it is hard and your d cannot make any decisions or be alone when it comes to food. This is ED and many have found that ED lies. Our honest kids are there but ED is in charge right now.
The best for us was having a strict routine for time of meals.
Start with one bite and encourage another. Please don’t be afraid. Have a plan for everything you can imagine good or bad. That may help your confidence.
How can we help you? What are you struggling with now?
XXX
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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Seashell
Thx everyone for replies. I watched the video and laughed out loud. Where do these compliant children come from? I love the idea of acting out scenarios but couldn’t they also include the screaming, the food being thrown on the floor, what to do when nothing gets eaten at all....as seems many people seem to experience that. And any help with these terrrible thoughts our young people are facing? Apart from distractions?

The alleged hummus eating etc. all happens in between meals when we are not downstairs. We have open plan downstairs so I cannot lock kitchen if I go to bathroom or out etc. Meals are supervised as is pretty much 24/7 but there are some times when she left unattended.

I’ve called Eating disorder team out to house to supervise one meal prior to weekend coming up. I want to get some help in the home. Anyone managed that? A friend got a former nanny to come in for a few meals. Like the neighbour idea too but a big ask to deal with what I put up with. I can’t find any private nurse outfits online that do kids. Surely there must be?
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Enn

Seashell, 
If you are offered Maudsley hospital, I would personally take it. They have a great reputation. Also, it is another way/avenue to tackle ED. Right now I wonder if your D needs a shake up in routine to get things moving. If one thing is not working, you need to try something else. It may not have been in your mind but could really help. 
As for purporting to eat whatever, I would still ensure you try to get the meals in- your way. I do understand, however, that is the real issue at the moment. (to get food into her)
Does she eat anything, that you have seen? Have you yet tried the "just one bite" method? I hope you have someone coming in too, if she eats with them.
My D ate really well when with her friends as to appear normal. Would that help your D, to get a friend over on the weekend for one meal or so?
I cannot recall if she is still in school and whether you need to keep her home? 

This part is the hardest, and it takes a lot of creativity and determination to start the re-feeding. And once she does start eating, it does get better. 

I hope today is better and she is eating. 
XXX

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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Enn
Oh just as I re-read your post from 2 days ago,  she only ate with the RN as she did NOT want to go back to the hospital...
I would use that. If she does not eat for you, well back to the ER you may need to go. Wonder how that would work in her mind?
XXX
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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Seashell
Thanks Scaredmom, we having another bruising day. No breakfast. Said she cant eat as period started today (proof that too fat). DH wanted to call 999 to get her in hospital straight away as have the assessment Monday and if not eating won’t take her so he doesn’t want to jeopardise that. I was more on fence as she did eat yesterday and was discharged from hospital Tuesday with no medical problems. I worried after 7 hours in A&E and it being weekend so ED staff not around they might not admit her again and thought we could get friend round etc have a go with that. I called a nurse friend who spoke to her on phone saying Drink eat or hospital which sent her ballistic. She now drinking loads but no food.

So my options are 1) A&E tomorrow am. with view to hope for admission so get eating for assessment. 2) Have tickets for outing with friends tomorrow which planned for months would involve eating lunch with them. Hope that this might get her going. She doesn’t have to eat at assessment so could try and get admitted via Consultant afterwards if no joy over rest of weekend.

Deep down I know DH right it’s just delaying the inevitable - admission necessary but he’s not the one having to spend 7 hours in A&E, see them bruise her arms/endlessly as they will want to take blood even though had bloods done 4 days ago. I’d rather try and get her in on Monday via the Consultant/ED team in a less dramatic way. Regarding jeopardising the Maudsley place....not certain a) I could get her to assessment, b) that they’d accept her, that she can eat.

I’m probably being too weak...
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Enn

Seashell, 
I am not there with you so only you can decide what you do. If she is drinking make if calorie laden drinks. Smoothies with cream, oil, high cal ice cream, yogurt etc.. 

If you decide to go to the hospital tomorrow and  knowing that she may in  fact get NG, take some food with you and she may eat it prior to being assessed. Some have driven to the hospital with food and the child ate in the parking lot as to not get admitted. 
Getting  a friend out to eat with may work. The outing you have planned, just be safe and take some "home" food with you in case she does not eat what is served/offered.
I am sorry it sounds so hard right now. 
There is no such thing as failure or being weak,it is scary to deal with. I know that many(ME) have felt scared. But when I thought of the worst possible situation ie she would not eat or drink and knew that I would take her to ER and insist on admission (we had a note from our pediatrician) if she was medically unstable. Then I felt stronger. 
Would she eat before the outing? As in " you may go to this outing, when you have had your supper, tonight and your meals tomorrow."?
That may be an incentive?

Throwing out ideas. Take what make sense and leave the rest.
XXX

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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Enn
Hi Seashell, 
Just thinking about you and hoping D is eating.
XXX
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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Seashell
Scaredmom: bless you for asking. Brought a tear to my eye as this life so lonely even when people around...

Well very reluctantly she ate a tiny amount late last night after staring at the food for 3 hours - not sure if because I said she couldn’t go to today’s outing if no food or because she’d had to have some juice as feeling faint. Anyway this seemed to open the floodgates and she alot - quite a binge. And then of course has been extremely distressed today and not eaten a thing....

Good news is a good amount of food went in as I stayed with her over an hour to check didn’t come back up. Bad news is no closer to meal plan.... I think I’m going to have to push for her to go back to hospital.... but how am I going to get her to do it when home? It’s hard to change your whole personality, parenting style and relationship dynamic with dd over night. When I tried a very firm way it ended with fireworks. When I try compassion she doesn’t comply. She got hold of my Eva Musby book somehow and picked a few phrases out and laughed at me “as if that’s going to work”. I know those changes can be made but they take time and meanwhile each week sees more weight fall off....

I heard of an acquaintance who had a special needs nanny to help in the home with her AN DD and she said it a godsend.... will try and get more details...

It’s incredible to see as weight falls off how much stronger the cognitions are....

Big hug to all of you out there struggling. Xx
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Enn

Seashell wrote:
... but how am I going to get her to do it when home? It’s hard to change your whole personality, parenting style and relationship dynamic with dd over night. When I tried a very firm way it ended with fireworks. When I try compassion she doesn’t comply. She got hold of my Eva Musby book somehow and picked a few phrases out and laughed at me “as if that’s going to work”. I know those changes can be made but they take time and meanwhile each week sees more weight fall off....

I heard of an acquaintance who had a special needs nanny to help in the home with her AN DD and she said it a godsend.... will try and get more details...

It’s incredible to see as weight falls off how much stronger the cognitions are....

 


Everything you write here rings so true for most of us. How do you change your parenting style. It does come. Sometimes out of pure desperation we change. 
I did hide all my books. And D still found them too. Don't worry about that right now. It sounds good to get  the special needs nanny or someone to support you. Sometimes when there is a "stranger" around their behaviour does get better. 
Yes as the weight falls off their ED's voice ring loud. And with more weight Ed's voice gets more quiet and then in time ED has no more voice and no more control and Ed is kicked to the curb!!

Big hugs,
XXX

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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Torie
Seashell wrote:
Scaredmom: bless you for asking. Brought a tear to my eye as this life so lonely even when people around... 


Seashell, there are a lot of us here who stick around to pay back all the help we received in the scary, confusing, overwhelming dark days.  We are ALL thinking of you.  Please remember that we're with you in spirit and don't ever hesitate to write.

Hugs xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Warrior1
Seashell wrote:
Scaredmom: bless you for asking. Brought a tear to my eye as this life so lonely even when people around...



Seashell we can all relate to this, it is a lonely journey, please know we are all with you in spirit, thinking of you and trying to help in any way we can.

Well very reluctantly she ate a tiny amount late last night after staring at the food for 3 hours - not sure if because I said she couldn’t go to today’s outing if no food or because she’d had to have some juice as feeling faint. Anyway this seemed to open the floodgates and she alot - quite a binge. And then of course has been extremely distressed today and not eaten a thing....

Good news is a good amount of food went in as I stayed with her over an hour to check didn’t come back up.

Bad news is no closer to meal plan....

This is not all bad news. Again food went in, you must of done something right. You think it was because of the outing? There is your incentive to motivate her, use that in your mantras when you are supporting her to eat. So she binged, what have you learned? That you need to put measures in place to control this, reassure her that you saw what happened you will not let this happen again. If you need tips on how to do this then ask the wonderful people on this forum.

I think I’m going to have to push for her to go back to hospital.... but how am I going to get her to do it when home?

Don’t lose confidence in yourself, you have had some small wins. Keep building on this and soon you will have bigger wins. So ok it took her three hours to eat, keep going and ED will know you mean business and it will get easier. Like others have said you are going to have to do it anyway at somepoint so keep trying now and if anything you will have learned a few things in time for the next round.

It’s hard to change your whole personality, parenting style and relationship dynamic with dd over night. When I tried a very firm way it ended with fireworks. When I try compassion she doesn’t comply. She got hold of my Eva Musby book somehow and picked a few phrases out and laughed at me “as if that’s going to work”. I know those changes can be made but they take time and meanwhile each week sees more weight fall off....

This whole thing is so bloody hard oh how ED loves to mock our efforts. You need to try and outsmart ED. Again what have you learned here. To firm or to compassionate didn’t work, can you try something in the middle. Insist that she eats but in a compassionate manner? I know I am making this sound easy and it’s really not but I do think sometimes it’s just finding the balance and the right thing to say. Try something like ‘I can see this is really hard for you, it’s horrible. Now pick up your fork and take a bite, you need to finish this meal In the next hour or you won’t be able to do whatever’. I would go as far as to plan something that she would really want to do or be prepared to buy an item that she really wants, so you can use that as an incentive, however be prepared to cancel it if needed to show ED who’s boss.



I heard of an acquaintance who had a special needs nanny to help in the home with her AN DD and she said it a godsend.... will try and get more details...

It’s incredible to see as weight falls off how much stronger the cognitions are....

Big hug to all of you out there struggling. Xx


Getting the right support is so important, it is physically and emotionally exhausting sitting for hours at a table trying to get food in, you can not do it consistently if you don’t have the energy. So I think this may be a really good idea to get someone else in to help. I actually really think you can do this. Use all your own emotions, the sadness, despair, the hoplessness and channel it and get really annoyed at ED, this will help keep you motivated when all you want to do is hide under the duvet. I’m rooting for you, please don’t doubt yourself. Sending you lots of hugs and my warmest wishes!

Xx
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ValentinaGermania
Seashell wrote:
Well very reluctantly she ate a tiny amount late last night after staring at the food for 3 hours - not sure if because I said she couldn’t go to today’s outing if no food or because she’d had to have some juice as feeling faint. Anyway this seemed to open the floodgates and she alot - quite a binge. And then of course has been extremely distressed today and not eaten a thing....


That is a good strategy that worked well here too: no food, no outing. You can go directly after finishing your snack.
Try to keep her from binging. She should eat what you serve but not much more. The risk that she starts to purge is high and that is the last thing you will need now.

Seashell wrote:
It’s hard to change your whole personality, parenting style and relationship dynamic with dd over night. When I tried a very firm way it ended with fireworks. When I try compassion she doesn’t comply. She got hold of my Eva Musby book somehow and picked a few phrases out and laughed at me “as if that’s going to work”. I know those changes can be made but they take time and meanwhile each week sees more weight fall off....


It is hard to change your parenting style but that is the really big step that is needed. In most cases the parents are more afraid of the reaction of their children and that keeps them from setting boundaries. It takes some time to find your big girl pants and set limits but that is the way it really works.

Your d (or ED) might laugh about Eva Musbys book at the moment but here are hundreds of parents that can proof that this was the thing that worked. Yes, ED, THIS IS GOING TO WORK!

Tina72
Keep feeding. There is light at the end of the tunnel.
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Seashell
Thx for all messages. I am getting stronger and standing up more but still not eating...
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ValentinaGermania
Can you talk with hospital and ask if you can come and bring her to eat there if she refuses to eat at home?
A lot of children started to eat once the car drove to hospital car park...
Just an idea.

Great that you feel a bit stronger today. Can you believe how great you will feel when you see that the boundaries work and she eats again? That gave me a lot of power back. And I asked myself a thousand times why I did not try to stand up against it earlier.
You are the parent. You are the mum. You set the rules and you show her that you mean business. To here and not further, ED...

Keep us updated how you are doing. We all think about you. We know how you feel because we all have been there. Keep swimming.

Tina72
Keep feeding. There is light at the end of the tunnel.
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deenl
Dear Seashell,

Seashell wrote:
Well very reluctantly she ate a tiny amount late last night after staring at the food for 3 hours - not sure if because I said she couldn’t go to today’s outing if no food or because she’d had to have some juice as feeling faint. Anyway this seemed to open the floodgates and she alot - quite a binge. And then of course has been extremely distressed today and not eaten a thing....


I am concerned that your daughter was feeling faint and I think that you should URGENTLY share this with the team. This can be an indication that orthostatic hypotension i.e. a decrease in blood pressure when taken lying down and when standing up. This measurement can indicate possible issues with cardiac function. I am trying to strike the balance between not terrifying you and ensuring that you take all possible steps to ensure your daughters safety. I am not a medical professional at all but I can tell you that when this happened to my son IP, he was taken by ambulance to the hospital to be checked but in his case there was no damage.

Hoping like mad that you can get some of the support on the ground that you really need.

Wishing you continued strength and courage,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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