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.

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yellowcaty
Hi
I'm new here, but wondered if someone could help. My daughter has been having FBT for around 6 weeks now. Although some things have improved she has not gained any weight. We are from England and she had a care team. I think I am doing everything right at home, but not sure why it is not helping.
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ValentinaGermania
Hello yellowcaty,
a warm welcome from Germany! Great that you found us here and you will see to join us here was the best decision ever. You will get a lot of help here. There are a lot of experienced parents around the whole world here and you will get support nearly 24/7.
To give you a quick answer to your question:
I am sure you are doing the best you can. It is very hard in the beginning and we ALL had problems to get that first weight gain.
It is really a big thing to just stop them losing more weight and you seem to have got that.

Not gaining any weight in 6 weeks can be caused by two different things:
1. It is very common that your meal plan contains not enough calories. We had a meal plan from IP which started with 1500 calories and went then to 1800 and we didn´t see a weight gain under 2500 calories a day. Most kids here needed about 3000-3500 calories, some up to 6000. The patients with AN often have a metabolic system and they need a lot fat and calories to gain any weight. Feel free to ask how to do that.
2. The second point is that you may not close all loop wholes. Is your d secretly purging? Do you watch her up to 2 hours after meals? Some kids here purged into bags in there rooms or out of the window or did hide it in the garden. They do a lot of tricks with that. Is she hiding any food? In clothes, bags, her room? Are you 100% sure that she is eating everything you give her?

It needs a lot of time to get into a routine and to make them gain weight. You are on the right way. Don´t give up hope. We all struggled at the beginning.
Tina72
Keep feeding. There is light at the end of the tunnel.
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yellowcaty
Hi Tina73
Thank you for your reply. She is only eating just over 2000 calories. Her team add food each week, but want her to go slowly as she was very undernourished. She will only eat what they tell her to.
She has a history of purging, but we try to watch her as much as possible.
I know things will be hard but it is good to be able to share with people who understand. I have sent this reply twice as it didn't show up the first time. Not sure if I'm doing something wrong.
Yellowcaty
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Foodsupport_AUS
Welcome to the forum. Sorry you have had to find your way here. 

Tina has summarised things correctly, the reason for your D not gaining weight is either not enough going in or alternately she is expending more energy than is going in. From what you say it sounds as though she may not be getting enough. I am also concerned that you mention you are doing FBT. It does not sound as though this is what is happening. In FBT the parents are firmly put in charge of re-feeding - you choose and decide what she should eat not the team, further this is one of the central tenets of FBT. If the team is telling you what to feed her this may not be FBT. Another concern is that there is only slow additions to her  meal plan at 6 weeks. Re-feeding syndrome is an issue early on, it does not appear to be an issue later on in re-feeding, ie. six weeks. There has been some recent studies which mention this as being a major issue with some re-feeding protocols, only extending the length of time of re-feeding without benefit. You may like to look at some of the articles listed here about slow re-feeding: https://www.biomedcentral.com/collections/refeeding-AN and read here for a description of FBT http://www.feast-ed.org/default.asp?page=FBT_MaudsleyApproach

FBT is not the only way forward, the most important thing to help your daughter is that she starts to gain weight (nutritional rehabilitation). In the UK sometimes there are some FBT like variants offered. You don't mention how old your  D is. Some teams have a reluctance for the parents to take charge of re-feeding, even though this is truly what FBT is about. There is a great guide put out by one of groups goingtobeatthis works for: please consider downloading both parts of this guide: http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartA_Nov_2017.pdf and http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartB_Nov_2017..pdf




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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ValentinaGermania
Hi,
I forgot a point 3 foodsupport mentioned:
3. It is possible that you d is exercising secretly. Then she will burn all the calories you get into her.

Although we do not know her age and her heigh I would think that 2000 calories is too low and that it takes too much time to increase it that slowly. The faster she is WR the better. We increased 300 cal every second day until she gained some weight.
I too find it irritating that you seem to be not in charge for food and the meal plan.

Tina72
Keep feeding. There is light at the end of the tunnel.
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yellowcaty
Hi
She is 16. She did gain 2kg 2 weeks ago and then lost it all again last week. We were told this week to feed her a smaller portion of our evening meal. That gives me more freedom to ensure it is high in calories. The problem is that they tell us what to eat in front of her and then she will only eat what they say. There is a dietician in each of the sessions with us. It is just hard to know if we are doing the right thing. I'm just scared that they will insist on hospital if she doesn't start to gain weight. We were told on our first assessment that we were close to her being hospitalised and that this could be anywhere in the country. We are desperate for this not to happen.
Yellowcaty
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mid73
I’m in the UK too and we did fbt initially. As others have said true fbt does not involve them telling you what to feed them. My daughter was hospitalised after 8 weeks and only 2 kg gain simply because her anorexia was so strong and violence escalated as we tried to increase calories.We got to around 2500 a day but then she began to purge and weight gain stopped. Of course in hospital straight on to a meal plan increased to 3000 cals after 2/3 weeks and then the weight came back at the rate of around 1.5 kg/ week so we were lucky. She ate as it was her way out! The unit was excellent at getting her on Home leave as soon as they thought it suitable. She was given a copy of the meals she would eat at the unit. We had an issue that she would only eat exactly what was written too. It was solved by the team at the unit just saying to her in my presence that you don’t have to eat exactly the same meal that is on the plan it’s just a guide. any meal your mum thinks is suitable is fine you just need to have a main course and dessert. After that she ate what was given. So maybe they could do something similar for you?
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Torie
I wonder if it would be possible for you to call them on the phone and discuss the problem out of your d's earshot and ask them to prescribe more calories.  I hate hearing about the "professionals" undermining the parents by saying unhelpful things in front of the sufferer.  Grrrr.  Something kinda similar happened to us, too, which is really frustrating.  They should be able to see that she needs more calories.

Another thing you can do is add rapeseed oil to smoothies, yogurt, pasta, soup, etc.  If you stir it in vigorously, it will disappear without changing the flavor or texture (as long as you don't add too too much).  I hope you are able to keep your d out of the kitchen while you prepare meals so she doesn't see scary ingredients like butter and rapeseed oil, which are needed for brain healing.

Please feel free to ask all the questions you like. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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yellowcaty
Thank you. I have been trying to get as many calories into our evening meal as I can. It is just frustrating that they have said small portion. We are lucky that she doesn't put up too much resistance to the food she is told by them to eat. I imagine this is because it is not a lot and she still gets to eat what previously were her safe foods. It is the purging afterwards that is the major problem.
I will phone them tomorrow. It just scares me a little that we have not made any progress. She actually weighs less than at her first appointment.
The whole thing is overwhelming. I have tried to read everything I can, but still feel so scared and alone. I blame myself for not seeing all of the signs that now seem so obvious.
Thank you all for your advice and support
Yellowcaty
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mid73
Don’t blame yourself. It is horrible and it is overwhelming. I still find it difficult to get my head round it all! I think Torie’s suggestion is excellent and could be what’s required to push her into eating enough.
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ValentinaGermania
Hi yellowcaty,
don´t blame your self, that is lost time. We all didn´t see the signs and looking back you are more clever because of that new wisdom you didn´t have than.
Try not to look back, what you said and what you did or not did. Try to look forward, that will need all your power.
It is sad but normal that you feel scared and alone because that is a very unique and difficult situation and none of us was prepared for that. You don´t give birth to a child and they tell you "oh, she might get cancer or AN and you might feed her with a spoon at age 16".
Try to think about what you did 2 weeks ago when she gained 2 kg and then do that again.
And you need to talk to that team, it is NOT O.K. that they talk about portion sizes and calories and weight gain in front of your d. That is not true FBT and that is not professionell. You should be in charge what she is eating and they should only tell her "your mum knows what you need and you must eat what she plates for you".
Small portion grrrrr that is complete nonsens. Can you plate a normal portion on a bigger plate for all of you so that it looks smaller? Or plate it in a soup plate that is deeper?
Try to add whatever you can and get into her as much as possible. Small footprints but high caloric. Do the cooking while she sleeps if necessary or when she is in school (if she is in school). She should not see what you add because then she might not trust you any more and that would be a big problem. Fill full fat milk in a low fat carton and cream into a milk carton.
Ask whatever you need. Refeeding is difficult. You cannot make something "wrong" unless waiting to long or leaning on "professionals" too long who make things worse instead of helping. Hope that is not the case here and you just need to wake them up a bit.

Tina72

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