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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Need to talk with another parent? F.E.A.S.T. parents offer peer support via:

joanne34
Hi, 

We are continuing with re-feeding and have now made the decision to up the nutritional content/cals of snacks and also instead of lunchtime supervision via school with a packed lunch, this week onwards we will be bringing our daughter home for lunch to have a 'hearty' cooked meal and then will take her back to school.  We discussed half days but school is one of her only positive experiences/distractions at the moment.   At the moment we know we need to really up her food intake.

Since making this decision/starting on this pathway she has become incredibly upset and has shut down.   She can't look at us and sits in a heap on the floor.  After eating, and she does eat what we give her, she is absolutely distraught to the extent it is difficult to get her out of that state. Whether this is now because every loop hole is now closed I don't know but I am really worried about her behaviour and whether she can cope.

We know we are helping her and keep telling her that this is the only way forward and that we know it is really hard for her but things will get better.   I cant even remember a day I haven't cried now!!  I am trying to hold it together in front of her but it is heart breaking seeing her like this.   Is this level of upset fairly normal and expected?   

Thank you 
xxx
Quote
sandie

Sounds like a very good plan around lunch. Really great to work out how to close loopholes and get more food in. 

It is great that she is eating what you are giving her. From what you have described, her distress sounds to be expected. Certainly here, we had high levels of distress which got worse once D started to put on weight and was expressed in various ways from self-harm to violence, extreme agitation and lying on floor for hours. Distraction helps. 

It is heart-breaking. I remember Foodsupport saying something along the lines of try to approach in a unemotional way if possible. I was not great at this for a longtime but it helped me at that stage to think of my child as a toddler who needs to be looked after and fed even if roaring crying/screaming. 

A hug to you. 

Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
Quote
Enn

Yes this is normal. Take heart to know they have to feel this pain and upset to get better. It is only food.  You are not hurting her at all. You are not making her worse but better. They have to learn to tolerate their distress.  It is part of the ‘treatment’. I wish teams would tell us that fact. Then we can be prepared for it- not like it mind you but so that we understand it better. The child  need to learn  over time and more food and different  foods that they need food and that food is good it is all ok. 
I hope that makes sense. 

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)
Quote
Aggie
It sounds like you are really tuned in to what you need to be doing and my experience was very similar. My d lived for school so I used that to get her to eat what she needed to.  She was distraught after so many meals and I always found a trip out to do something simple like go to the supermarket and get face masks or even just a wander around eased the Ed voice. We did the food, then we got out and did something else, just walking around shops looking at things took her mind off it, we chatted about nothing and everything but it seemed to keep Ed at bay.  Good luck x
Quote
joanne34
Thanks so much everyone, that is definitely reassuring.   We are definitely determined to up her food intake to kick start weight gain.  
Quote
ValentinaGermania
We have two says here:
When you see the flak you are over the target.
When you see ED fighting you are doing something RIGHT.

So yes, that is totally normal. My d did not talk with us, did not look at us, did not let us touch her as if we were the most terrible persons in the world (and I am sure ED thought we were!). But she ate. And that is most important now, that she eats. If it helps her to eat to hate you, that is o.k. It is a phase and it will pass and today I get all the kisses and hugs back that I missed for some months 3 years ago. Try to get through that and do not take it personally. It is a good sign when ED hates you!
Keep feeding. There is light at the end of the tunnel.
Quote
Foodsupport_AUS
Yes this does sound really normal. The distress this illness causes our children is heartbreaking and one of the hardest things about home re-feeding is that we have to be the bad guy and make sure they do what is needed. The only way out of this misery is for her to regain the weight she has lost and to normalise nutrition over time. Unfortunately this causes a huge degree of distress. No one likes to see their child so miserable and the temptation is to go easy and not do what is needed, however the next option is that this is done in hospital or inpatient. Many kids are incapable of attending school at this phase, some withdraw from life completely mine did for a full 18 months, but your real child can come back and she needs you to stand up to what is happening in her head. If your child had diabetes you would insist she took her insulin even if terrified of needles, this is the same. You are doing a great job. 
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.
Quote
PurpleRain
We watched a lot of series (thank god for Netflix) during refeeding, both during meals (a big no no before an) and after, all afternoon, most afternoons, it really helped. We can eat normally now but on days that I want to give a big(ger than usual) snack to make up, or an extra one, I still do it when she's watching something, it's just easier. I will deal with going back to less TV time at some point in the future if needed (it has happened naturally, but we are not back to previous levels, we may never get there again, I really don't care, my priorities have shifted). Hope some of this helps. 
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
Quote
deenl
Hi joanne34,

I used mantras in my head to help me cope 

Short term pain for long term gain
You've gotta be cruel to be kind, in the right manner (along with the accompanying melody!)
When you are going through hell, keep going.

I used to also imagine that there are so many parents all over the place, firmly and lovingly insisting their kids to partake in medical treatment no matter how distressing. They, like us, pull enough courage from the depths to get our kid and the whole family through this horror because we can invision a healthy and happy future even when they cannot or when they think it is too hard. 

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.
Quote
edengirl
Very normal from what we experienced.  Our daughter would usually end up in a full blown panic attack after meals.  She even started talking in this voice that I didn't recognize at times.  It was incredibly scary and painful to watch.  When we spent the week at UCSD they really encouraged distraction during and after meals.  It made a world of difference.  We kept the TV blaring in the background, had games at the table and anything we could do to keep her from really being able to get into that zoned state of worrying about her food intake.  Press on and know that ED is very unhappy when those loopholes begin to close.  One thing my daughter told me after she was better that might help you- she said, "I would pray that you would make me eat because I was so hungry and it wouldn't let me eat."  Remember that....and press on to getting her well!  With every bit of weight increase, it was our experience that these episodes become less and less extreme.
Quote
Torie
Joanne, it really sucks that it usually needs to get worse in order to get better.  As you are seeing, this usually means it gets a lot worse before it gets better.  But after it is done with the getting worse part, it does get better.  Really.  Good for you to be taking these needed steps!  Please remember that we're with you in spirit. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
ValentinaGermania
PurpleRain wrote:
I will deal with going back to less TV time at some point in the future if needed (it has happened naturally, but we are not back to previous levels, we may never get there again, I really don't care, my priorities have shifted).


Same here. Priorities had changed 🙂.
But I can tell you from the other side of the tunnel that we are back to normal RE TV after 3 years. 😁
Keep feeding. There is light at the end of the tunnel.
Quote
PurpleRain
We'll get there ha ha
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
Quote
joanne34
You were right about things getting worse before getting better.  My daughter gained weight for the first time today.   However, although a positive it was clearly a massive negative for her and really tipped her over the edge.   It has been an incredibly emotional day. 
Quote
PurpleRain
Congratulations on the weight gain, sorry she was so upset about it, I guess is par de course in this horrible disease, at least in other diseases when you get better physically, you normally feel better emotionally too, but in this cruel, cruel illness even if we are happy inside, we see our children in distress, so hard. Virtual hugs! It will  get better but the path to recovery is long, hard and non linear arghh!
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
Quote
Torie
Yay for the weight gain!!!   So proud of you and your d for that!

And so sorry about the fallout.  I can't remember if we already talked about the possibility of blind weighing on your thread.  Many (nearly all, I think) find that that makes things much "easier."  

Keep swimming. xx

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

The weight gain is amazing! I held on to that when there was fall out. 

On therapy/doctor days we had a lot of upset. I learned to keep things calm those days. 

 

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)
Quote
sandie

Yes we served safe food on therapy days and planned for upset. 

so pleased re weight gain. Xx

Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
Quote
ValentinaGermania
joanne34 wrote:
You were right about things getting worse before getting better.  My daughter gained weight for the first time today.   However, although a positive it was clearly a massive negative for her and really tipped her over the edge.   It has been an incredibly emotional day. 


Did they mention the weight gain? Is she weighed open? Can you change to blind weighing and poker face and not let her know any number? That helped a lot here.
Keep feeding. There is light at the end of the tunnel.
Quote
joanne34
I think I am going to move to blind weighing just to try and minimise the fall out.   We have also had to shut down another loophole - sleeping with minimal coverage to stay cold at night!!!  Honestly, there is no let up with this condition!!!!    Now we have to check she is well covered at night, to the extent I will check on her several times.   Just when you think you have most things covered!!!!!   Thank goodness there are only a couple of weeks until half term!!!
Quote
sandie

I think you are doing brilliantly- closing the loopholes/ working out next steps. Tip for half-term: we found it useful to have a routine going over half-terms to keep the show on the road. 

xx

Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
Quote
Torie
The Whack-a-Mole thing gets really old, doesn't it.  Ugh.  

Keep up the good work! xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
ValentinaGermania
joanne34 wrote:
I think I am going to move to blind weighing just to try and minimise the fall out.   We have also had to shut down another loophole - sleeping with minimal coverage to stay cold at night!!!  Honestly, there is no let up with this condition!!!!    Now we have to check she is well covered at night, to the extent I will check on her several times.   Just when you think you have most things covered!!!!!   Thank goodness there are only a couple of weeks until half term!!!


That sleeping without a cover thing is something which is VERY popular on those bad internet sites where other anorexics give you tips how to lose weight (another popular tip is to have cold showers, both will not work for weight loss but can cause a severe cold). Please check what she is doing with her phone and pc...

We did at first open weighings because that was what they did here in hospital and it was really bad. We had distress and anxiety and crying with every weighing and a lot of fights afterwards to get rid of these 200 g gain again. When we changed to blind weighing and not telling her any numbers any more that stopped immediately. She was relaxed at weighing appointments, she did not even want to know her weight any more. Please try that.
Keep feeding. There is light at the end of the tunnel.
Quote
joanne34
Thanks.  Our daughter has taken on board sleeping with more 'coverage' at night.  Although I am still checking and making sure she is warm.  🙂
Quote

        

WTadmin