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

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mumofone
Hi 

I haven't posted for a while but have been keeping an eye on the threads and seeing everyones struggles and news. Hvent posted much myself as things have been plodding along, or so I thought!

My D has RAN and was hospitalised in the summer for 10 weeks. She was around 38kg (around 5ft 3 in height)when admitted and around 45.6kg when discharged, her top weight was 46.85kg. She did great in hospital, ate all she was told and tried so many different foods. When'd discharged she started off great and then the minute her consultant signed her off, she turned super fussy again...........

We are now at the point where the last 3 weigh ins she has lost some weight (very very small amounts each time) and is down to 45.8kg, so basically where she was when she left hospital.
Christmas was difficult as she was away with dad and ate junk food pretty much all the time (yet still lost 0.1kg), but since coming back her anxiety has gone through the roof. Things she had previously been ok with (meeting friends in town) now sends her into a melt down, she can't eat and then throws up....not ideal!!

I have asked for a review with her CAMHS counsellor to see if she thinks there has been any progress, as far as I can see the anxiety is worse, the fussiness is worse and the weights pretty much plateaued. she pretty much eats the same food all the time.....but yes I am grateful she will eat something.

I had a session with CAMHS this week and I agreed that I would back off a little and see how she reacts, so no asking "what did you have for snack/dinner etc when she's been out with friends. Trouble is I do have to be on her back constantly otherwise she will forget to eat!

She does seem to be willing to eat junk food (ok not large amounts) and am not entirely convinced her diagnosis is RAN (she did have some boy dysmorphia when admitted) but more of AFRID as she is so super fussy. If something is different on a meal she likes its like the end of the world! We live on a small Island with not much expertise (although currently a high number of AN girls).

Her mood has generally been ok, although hiding in her room a look this past week or so and not wanting to spend time with us. Very moody with me...
just wanted to get this off my chest as have been feeling like a complete failure (of course she's great with dad!)

Thanks for listening 

x
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tina72
"I had a session with CAMHS this week and I agreed that I would back off a little and see how she reacts"

Who´s idea was that??? I think she already proofed in the last weeks that she is not able to gain weight alone and her mood is bad and anxiety increases, so all signs of AN being very loud again. I would think about doing exactly the opposite: getting back to refeeding and magic plate until she is at a good weight for her body. I do not remember how old your d is, what BMI is that at the moment?
Keep feeding. There is light at the end of the tunnel.
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scaredmom

#1: YOU ARE NOT A FAILURE
This illness stinks and is so hard. It is sneaky and cruel in so many ways. 
The first goal is to increase the weight. What is she eating and how do we help you increase the calories immediately?

Try to get her out of her room so you can ensure she is safe (self harm, or purging, or hiding food, or on undesirable websites...)
Can you and her father get on the same page to do this together, whether she is with you or him, the program for eating is the same? 
When eating out with friends you need to ensure she eats.. or you feed her at home first. If you did not see it go in, it likely did not. 
I would also talk with the therapist alone and discuss the issues properly. a) that you need the therapist on YOUR side b) D has to gain and then back to a).

Many have laddered in different foods over time but the main goal right now is weight gain. 
They always have an adversary and from what I have seen on the forum, more mom than dad. I actually think that is good thing. ED knows you are the soldier that will get it done AND she feels comfortable to let out her anger(really fear) on you. She feels safe that you will tolerate and accept her anger fear etc.. That you are strong enough to carry it.
Tell us how we can help you now to get the kilos on.
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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mumofone
Hi

I think they suggested it as we have two very different camps (Dad and I are divorced) He is super laid back and I am super strict/nagging etc and our relationship is suffering a bit as a result. She does eat with Dad, but he tends to give her foods he knows she will eat and doesn't challenge the ED as he doesn't want any fighting when he only sees her one a week, which I get, and he is of the opinion she eats with him so what's the problem. The program should be the same but he's not great at calorie counting as just guesses and it is only one day a week.

She's generally in her room chatting to friends, she is definitely not a self harmer (at this time) or a purger (her biggest fear is being sick) but just be nice to have some time with her. her friends are her world right now and they are a lovely bunch of girls.

At the moment I just want her to eat so am making sure she gets the calories from the foods she will eat with little resistance and will try and bring in new foods when things are more settled.

We are due a weigh in on Tuesday so will update then. Fingers crossed its the right way!
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tina72
"She's generally in her room chatting to friends"
So maybe taking away this possibility when she refuses to eat what you serve might be an idea?

"her friends are her world right now and they are a lovely bunch of girls"
Are there some who are NOT thin and eat well and you can invite them to come around for tea or dinner? Some eat better when friends are around because they want to be "normal"...
Keep feeding. There is light at the end of the tunnel.
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debra18
Is she able to drink high calorie drinks? My daughter also always was a fussy eater, but always enjoyed candies and cakes. She is now able to eat those things again, but still eats too little. But with two high calorie drinks added to what she eats, she is able keep her weight steady and moving up appropriately for a growing child.
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Torie
mumofone wrote:
Hi

I think they suggested it as we have two very different camps (Dad and I are divorced) He is super laid back and I am super strict/nagging etc and our relationship is suffering a bit as a result. 


Oh dang, so sorry you have this additional challenge.  I hope part of the deal was that her dad would step up the strictness/nagging.  To me, that is far more sensible than suggesting that you back off.  

Everyone hates to be the bad guy - myself most definitely included - but even higher in priority is getting the needed calories in.  It sounds like your d still has a significant amount of weight to regain, which will most likely be a real challenge and not something that can happen unless you are "strict" and "nagging."  I would maybe suggest a reframe to label this "diligent parenting" instead of "strictness/nagging" as your d almost certainly needs you to step back up the your previous level.

Please let us know how the appointment goes. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
Sorry that it is such a difficult situation - between CAMHS being unhelpful and Dad not getting it either. I agree with Torie that no one likes to be the bad guy. Ideally you should all be offering her the same degree of supervision and food with little difference between. Is the issue more variety of foods or quantity? Although it is great to get things moving with lots of food challenges, there is much to be said for getting her weight up first and expanding later. Your goal is to go back to where she was before she got sick and she was always somewhat restrictive in variety she will be when better too. It is definitely easier to work on variety once her ED is more under control. Long term we have no issues with variety but we had a very small repertoire early on. 
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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tina72
Can you talk with her dad and for example send her to him with a prepared lunch and dinner for both of them? He might love not to need to cook and you would know what she has eaten. Just an idea.
Keep feeding. There is light at the end of the tunnel.
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scaredmom
I wonder if her Dad came over a few times at meals and actually saw what you do may help him and her? 
I know it may be uncomfortable, but if D saw you acting as a team together, that may help with compliance. 
Having a few dinners together, may help both of you come up with a plan of attack. 
Even at one day a week, ED will see that as an opportunity to get its way and we all know when we give Ed and inch, it takes a mile. Hard to get back on track for you. If we decide to treat any illness properly, then it is the FULL TREATMENT every day. 

I like Tina72's idea too about sending  a meal or two with her when she is with dad, so no one has to think about it.
I know it is more work for you, but will pay dividends in the, hopefully, near future.
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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Mamaroo
mumofone wrote:

I had a session with CAMHS this week and I agreed that I would back off a little and see how she reacts, so no asking "what did you have for snack/dinner etc when she's been out with friends. Trouble is I do have to be on her back constantly otherwise she will forget to eat! 


I still ask what she had with friends, so I think it is OK to ask. The other thing I do, is give her and her friend snacks when they go out to the shops, in that way I don't have to ask ;-) 

mumofone wrote:

She does seem to be willing to eat junk food (ok not large amounts) and am not entirely convinced her diagnosis is RAN (she did have some boy dysmorphia when admitted) but more of AFRID as she is so super fussy. If something is different on a meal she likes its like the end of the world!


I remember somewhere here there was a poster who created a list of 10 food items her d didn't eat. Her d was required to eat each item 10 times before it was strike from the list. When every item was strike out, she was able to get a big incentive. Maybe you can think of the foods you want your d to eat and make a list and ask her what item she really wants (my d would ask for adidas shoes) and get her to eat it with the purpose of getting the big incentive. 

mumofone wrote:

Her mood has generally been ok, although hiding in her room a look this past week or so and not wanting to spend time with us. Very moody with me...
just wanted to get this off my chest as have been feeling like a complete failure (of course she's great with dad!)


You are not a complete failure - ED just wants you to think so, so that you would back off. You are doing a great job standing up to ED. Come here to vent as often as you need to.

Sending you lots of hugs!!!
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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mumofone
Thanks for all your messages. So weight is down again to 45.15kg so biggest drop yet, and back to weight at start of September. We have CAMHS tomorrow so will be raising my concerns again. Whats surprising was we thought she had done quite well this week, maybe growth spurt!

Her anxiety raised its head yet again today, was sick at school and I had to collect her as she didn't feel able to walk home on her own. Again will bring up again tomorrow.

Dad has been supportive, he is also a super picky eater himself (obvs doesn't help!) so its quite tricky for them in their house, his poor GF has to cook four different meals most nights!. She does eat when there but is not challenged but at the moment am concentrating on her eating enough rather than introducing new ranges of foods. 

I haven't actually backed off that much, haven't needed too as dinner has generally been eaten this week. Have continued to remind her re snacks etc.

She's still on fortisips for evening snack so that's something but would be good to get off these at some point as they are propping her up (IMO)
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scaredmom

mumofone,
Where do you think she is losing the calories resulting in weight loss? 
Exercise? or hiding or dumping food if not purging. My D hid the food ( I found rotten food in a hidden place in the basement!)
And where do you think you can increase calories to get the weight on?

I know you will meet with CAMHS in the next day, are you concerned she should be inpatient? 
I think getting the weight on is the priority here and hope they have some strategies to support you all.
All the best!

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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Mamaroo
mumofone wrote:
Thanks for all your messages. So weight is down again to 45.15kg so biggest drop yet, and back to weight at start of September. We have CAMHS tomorrow so will be raising my concerns again. Whats surprising was we thought she had done quite well this week, maybe growth spurt!

It might mean more calories now that she is a bit taller or her metabolism could have gone up. 

mumofone wrote:
She's still on fortisips for evening snack so that's something but would be good to get off these at some point as they are propping her up (IMO)

If she is having that, maybe introduce another one in addition to the food she is already eating. It is an easy way to get more calories in. When she is at a better weight and state it will be easier to swap the fortisip with real food.

I'm glad dinner is not such a struggle any more. I still need to present snacks as she would not take on her own, but we'll get there.

Best wishes!!!!
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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tina72
"Whats surprising was we thought she had done quite well this week, maybe growth spurt!"
If she has not grown I would think about purging, hiding food and exercising again. When you do not see ED and the weight goes down suddenly that often means ED has found a loophole. Was she happy about the weight loss? Does she know it?
Keep feeding. There is light at the end of the tunnel.
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phocine13
It is great that your daughter has a group of friends to spend time with (even if it is electronic).  With all the time spent in treatment, and all the emotional baggage, many of my daughter's friends have moved on and left her in the lurch.  She is 15 and I'm basically her best friend.  I love spending time with her, but she and I both feel some anxiety about her lack of involvement with kids her own age.  She wanted to join the track team to spend time with other teens, but the training led to a relapse, 5 days in the hospital with dangerously low heart rate, and now the treatment team has put her back on exercise restriction.  

We are seeing that she needs a lot more food to gain than she did in the past.  She is hypermetabolic. They gave us a meal plan at the hospital and it worked at first, but then she started to lose and we had to add to it.  Has your dietitian offered that an increase in her meal plan may be needed?  Our dietitian counseled that my daughter may not be finishing her food at school and I pointed out that it doesn't really matter because if she loses weight, I will increase what she eats at home. 

I'm new to the forum and don't know all of the acronyms yet.  
best laid plans...
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Foodsupport_AUS
phocine13 wrote:
Our dietitian counseled that my daughter may not be finishing her food at school and I pointed out that it doesn't really matter because if she loses weight, I will increase what she eats at home. 

Welcome phocine. Although it would seem that this may work it is probably reinforcing her ED. It means she is restricting in some places, which in turn is reinforcing her ED thoughts and behaviours. Regular meals of good quantity all the time is part of the treatment it accustoms the brain to the habit of eating enough. In an ideal world close all those loop holes. If she is not eating at school she needs to be supervised or out of school. 
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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scaredmom
Hi phocine13,
I welcome you to the club and so sorry you needed to find us. 
The isolation is common in ED and over time this should get better. Are there some activities that are not sport related that she could join, like the band or choir at school? That may help the social isolation she may face. Also can she invite a friend over to spend time, see a movie etc...  that may help to reestablish her contacts. 

Yes many become hypermetabolic and you need to feed and feed and feed. 
You will learn the acronyms for sure. And if you need to ask, then ask, we all want you to feel welcome. 
Please ask all the questions you have. 
We are all ears and( big hearts).
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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scaredmom
phocine13,
I also wanted to suggest, if you wish to start your own thread (new topic) you will likely get many replies to your specific situation, 
All the best.
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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tina72
Hi phocine 13,
a very warm welcome from Germany and sorry that you have to be here.
"I'm new to the forum and don't know all of the acronyms yet."
It took me months to find all that but please ask, we can explain it and I am sure some other parents will be relieved that you asked 😉.
I would also suggest you open your own thread so you will get much more replies.
Getting in contact with peers again is hard. Maybe we can help with ideas.

Keep feeding. There is light at the end of the tunnel.
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