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

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Becs
My DD was diagnosed with AN at the end of January 2019. We are in Ireland and have weekly outpatient appointments with CAMHS and are following an FBT programme. When we began refeeding she refused all food and drink so we were into the GP pretty quickly. The GP gave her a lecture and hospital was mentioned and no sooner were we out of the surgery, she wanted to go straight to the supermarket and buy up the shop. We came back in the car eating flapjacks and crisps and I've never been so happy. She spent a couple of days making healthy eating choices, but then started restricting more. She has, however, stuck to the regime of 3 meals and 3 snacks daily since then (though not without enormous tantrums and some self harm) Nevertheless, she has steadily lost weight since. I believe much of this is to do with being vegan - the sheer volume of food required on a vegan diet is huge and she spends an average of an hour on each meal/snack. She now creates meal plans, but I 'sign off' on these (and have learnt to be pretty strict in the face of continued weight loss). She prepares all her food (which she has done for the last 18 months or so - whether this is AN related is another question) I know that this is entirely at odds with the FBT programme. However, she is able to add more to the menu each week in the face of weight loss. Last week, our GP prescribed Fortisip to supplement the meals/snacks. This isn't vegan so DD is making the equivalent calorie shakes on top of her meals and snacks. Again, this is highly at odds with what we should be doing right now. However. She is responding to the evidence put in front of her by CAMHS and the GP. She is mostly quite lucid and rationale about her AN. She is able to increase her own intake with the food she makes herself. Does anyone else have any experience of doing it this way? I know many people believe that veganism is the beginning of restricting, but my DD had a fabulously healthy diet for 3 years prior to AN, and a great vegetarian diet for 3 years prior to that. Our therapist says that its OK for DD to make her own food if its what I would make for her myself. In an ideal world right now, I would be making her food from an omnivorous diet but I am in no doubt that would be the fastest route into hospital (and that is not a good option where I live) Sorry for the long post. Its my first so something of a ramble. Take care everyone xx
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tina72
Becs wrote:
My DD was diagnosed with AN at the end of January 2019. We are in Ireland and have weekly outpatient appointments with CAMHS and are following an FBT programme. When we began refeeding she refused all food and drink so we were into the GP pretty quickly. The GP gave her a lecture and hospital was mentioned and no sooner were we out of the surgery, she wanted to go straight to the supermarket and buy up the shop. We came back in the car eating flapjacks and crisps and I've never been so happy. She spent a couple of days making healthy eating choices, but then started restricting more. She has, however, stuck to the regime of 3 meals and 3 snacks daily since then (though not without enormous tantrums and some self harm) Nevertheless, she has steadily lost weight since. I believe much of this is to do with being vegan - the sheer volume of food required on a vegan diet is huge and she spends an average of an hour on each meal/snack.


So eating 3 meals and 3 snacks would be great but if she is loosing weight with that there are normally 3 probably reasons:
1) purging - can you 100% exclude that she is vomiting secretly? Some do that very silent while showering of into containers in their rooms or even out of the window into the garden
2) exercising - can you 100% exclude that she is not secretly exercising? In the night when you are sleeping for example? Running rounds on her way back from school?
3) too low intake - how much would you think is she eating at the moment? Most here needed around 3000 calories a day to gain weight but some needed up to 5000/6000

Becs wrote:
She now creates meal plans, but I 'sign off' on these (and have learnt to be pretty strict in the face of continued weight loss). She prepares all her food (which she has done for the last 18 months or so - whether this is AN related is another question) I know that this is entirely at odds with the FBT programme. However, she is able to add more to the menu each week in the face of weight loss.
Last week, our GP prescribed Fortisip to supplement the meals/snacks. This isn't vegan so DD is making the equivalent calorie shakes on top of her meals and snacks. Again, this is highly at odds with what we should be doing right now. However. She is responding to the evidence put in front of her by CAMHS and the GP.


You did not write how old your d is but I think preparing her own food is definitivly AN behaviour as no healthy teenager would do that. She adds more, for sure, but it is obviously not enough as she is still losing weight. Vegan/vegetarian diet is no good idea in refeeding and AN treatment as it means restriction and she should eat all food without any restriction. So is she is still restricting and not gaining weight by feeding herself it is time to set a limit and take over.

Becs wrote:
She is mostly quite lucid and rationale about her AN. She is able to increase her own intake with the food she makes herself. Does anyone else have any experience of doing it this way? I know many people believe that veganism is the beginning of restricting, but my DD had a fabulously healthy diet for 3 years prior to AN, and a great vegetarian diet for 3 years prior to that. Our therapist says that its OK for DD to make her own food if its what I would make for her myself. In an ideal world right now, I would be making her food from an omnivorous diet but I am in no doubt that would be the fastest route into hospital (and that is not a good option where I live) Sorry for the long post. Its my first so something of a ramble. Take care everyone xx


She has probably increased some intake but as you see she has not gained so she might have increased things she know will not make her gain anything and that is useless. What is a fabulous healthy diet in your eyes? In my eyes any diet is harmful for a growing child...A healthy child should not even think about what he is eating, fall into the kitchen, eat what is on the table and be out with friends in the next moment...
Sorry to be so blunt. That is my experience about that.
Keep feeding. There is light at the end of the tunnel.
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Becs
Thanks very much for your reply Tina. She is currently on 2,000 calories but only in the last week. Its been a huge struggle to get there and I know we need to keep increasing to get that weight gain. I'm near 100% sure she's not purging or over-exercising - we keep a strict eye on her after meals and check her room often due to the self harm. We are keeping her out of school until we have gain. By vegan 'diet' I meant normal, healthy eating which gave her all she needed to thrive/do sport for several years prior to her ED. I understand that with an ED, an omnivorous diet is optimal but I do believe recovery is possible with a vegan diet too. Frankly, it has to be in our case as she is utterly committed to it for ethical reasons. She is 15 and has been incredibly independent for a few years so cooking for herself was part of that though I guess when we get further into therapy we might discover if this has influenced her ED. But for now, we're just getting started with refeeding and I'm interested in anyone who has similar experience to ours. 
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Foodsupport_AUS
Welcome to the forum, sorry that you have had to find your way here. 

You are definitely right to be suspicious that being vegan is potentially a part of her eating disorder, further there is some suggestion that animal fats and proteins seem to be helpful in ED recovery. Your D is only 15 so having been "independent" in her food preparation over the last few years sounds very much like a red flag to me, and in particular it was  during this time she fell into AN. 

You have been refeeding for the last six weeks and still have not had weight gain, again this is a flag that things really need to be changed up, and I would suggest this should be you taking over the meal preparation. She may have had three meals and snacks per day but at only now reaching 2000 calories per day they have been inadequate and she has just been getting sicker. Asking her to make these choices or her asking to make them is very likely being strongly influenced by her ED. 

Generally speaking if there is no clear progress within the first four weeks of FBT things need to be changed. She should be gaining 1kg per week. It is likely she needs another 1000 calories or more per day and with a lot of this being mixed fat an proteins. She is likely to be B1 and B12 deficient given her ED and her long standing veganism, and these need to be addressed ASAP too. 

My D desperately wanted to be in charge of her food when she first became ill. The fact is her ED was in charge when she was choosing food. 
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
Becs wrote:
Thanks very much for your reply Tina. She is currently on 2,000 calories but only in the last week. Its been a huge struggle to get there and I know we need to keep increasing to get that weight gain. I'm near 100% sure she's not purging or over-exercising - we keep a strict eye on her after meals and check her room often due to the self harm. We are keeping her out of school until we have gain. By vegan 'diet' I meant normal, healthy eating which gave her all she needed to thrive/do sport for several years prior to her ED. I understand that with an ED, an omnivorous diet is optimal but I do believe recovery is possible with a vegan diet too. Frankly, it has to be in our case as she is utterly committed to it for ethical reasons. She is 15 and has been incredibly independent for a few years so cooking for herself was part of that though I guess when we get further into therapy we might discover if this has influenced her ED. But for now, we're just getting started with refeeding and I'm interested in anyone who has similar experience to ours. 


To gain weight with 2000 calories is nearly impossible. If you cannot get her to eat at last 3000-4000 on herself you need to take over. Ask her to double her intake from today on or she cannot decide that any more as you have already lost 6 weeks with that and she could have already gained in this 6 weeks.
In my eyes a vegan diet is not healthy for a growing child and most dietiatian see that the same way. They often have big deficiencies in B12 and zinc and that increases depression and no appetite. Did your d have regular blood checks in these last years? Bone check? A vegan diet is a high risk for osteoporosis later. Did they already do a dexa-scan for bone density? My d had never been vegetarian or vegan and restricted only about 9 months and had bad bones already...

I know that some parents here refed on a vegetarian diet but I do not know any parents that have a healthy AN free child today that is still vegan. Sorry. Restricting and ED is something that does not fit. And it is much more difficult to get enough calories into them without cream and butter, I have no idea how to do that.
Sorry for being so blunt.
Keep feeding. There is light at the end of the tunnel.
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bub1
Hello Becs,

I am normally an appreciative reader on this forum rather than a contributor but thought it might be helpful to add to this discussion. 

My daughter was diagnosed with anorexia (restrictive type) 2 years ago when she was 15.  Like your daughter, she is vegan.  We would have liked to have re-fed her on an omnivorous diet (we are a meat eating family and she was brought up eating meat) but her commitment to veganism was absolute and she categorically refused to eat anything non vegan.  With the support of CAMHS, it was agreed that she could be re-fed as a vegan provided she gained the required weight.  If she failed to do this, veganism would have to be put to one side.  Two years on and 16kg later, she is doing well.  There are still a few poisonous strands of anorexia remaining that continue to worry us but her state is good as are her electrolytes, she eats independently and we hope she will be able to take up a place at medical school and live away from home in September this year.

My daughter also did her own cooking pre diagnosis.  It seemed to make sense then as I had to cook different food for the rest of the family and, in our pre-anorexia innocence, thought it was a positive thing for her to be doing.  CAMHS recommended that I take over all the cooking. My daughter insisted that she knew exactly what she needed but the reality was that when she fried anything she used a speck of oil so small that a microscope was needed to spot it!  Despite her objections, we pressed ahead.  In retrospect, it was a good call for us.  Food was such a huge obsession and fear for her that keeping her out of the kitchen (most of the time, wasn't always successful) was, in her case, a protective step.  It also meant that I learned a huge amount about vegan food and how to ensure she got everything she needed.  

It took us a long time to get her weight going in the right direction.  It could be argued that this was down to the vegan food but I think it would have been the case whatever diet we followed.  Our GP did not pick up on the anorexia and, by the time we eventually made it to CAMHS, the illness was very entrenched.  The struggle to raise the calories felt at times like swimming against a tsunami.  Fortunately for us, our daughter was able to gain weight, albeit at the slower end of the scale, on between 2400 and 2700 calories daily.  Many parents of this forum have children who need more than 3000 calories to gain weight.  For us, that would have been extremely difficult on a vegan diet.  My daughter had a lot of problems with her stomach during re-feeding and ate very slowly.  

When reading this forum, I often feel that we have not done things the right or established way and am wracked with self doubt.  However, the bottom line is, I think, to get the weight back on and to help in whatever way you can to make the world seem worth getting better for.  This forum is full of good advice and I think it's about trying out what you think will work for you and finding your way forward.  Wishing you and your daughter the very best.
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Becs
Hi Bub1. Thanks so much for your reply. It was very heartening to hear from someone else with a vegan child. I do believe we can get more calories into my daughter then we've managed already. Her bloods are synonymous with a low body weight but she has never had any deficiencies (she takes a great multivitamin designed for teenage vegan girls) Even in the last few months, there has been a big increase in options available to vegans, including foods an anorexic needs. I don't doubt its harder but asking my daughter to consume animal products would like asking anyone else to eat another human! It would be an enormous stressor. Over the years, both my daughter and I have cooked her very healthy vegan meals and so I know its possible to thrive. But I am having a very steep learning curve on the sheer amount of calories she now needs. I had no idea about this at the start of the programme (since FBT states that parents 'just know' what their child needs) I now do know, having read this forum and other sources. I do appreciate you taking the time to share your story and best wishes to you and your family for your continued healing.
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toothfairy
Hi Becs,
Welcome from Dublin.
Here is my own personal opinion from my knowledge so far in dealing with ED recovery.
There are very few, if any, of the world leading reputable ED clinics and clinicians that will treat a  patient on a vegan diet.
I have just made a thread on vegan and vegetarian with ED. There are some interesting articles there.

Also
I think this is brilliant, it was made by another parent advocate that has kindly allowed me to share.


1. You prepare meals

2. Do not allow your child in the kitchen during meal prep

3. Your child should not go grocery shopping.

4. Toilet before meal and no toilet for at least an hour afterwards.

5. If purging is suspected, use an open door policy in the bathroom, or have them count or sing whilst in there. And no flushing

6. Do not negotiate - whatever you serve has to be eaten

7. Use whatever leverage you have - phone, Internet, tv - whatever they hold dear is to be removed if they refuse to eat, until they have eaten. If they're older and are not financially independent, this is your leverage

8. Separate the two - Your child is not the ED

9. Detach yourself from the situation during meals. Do not get drawn into emotional discussions. THIS IS NOT UP FOR NEGOTIATION

10. Remember that your child wants to recover - the ED is stopping them

11. Your child needs your permission to eat. They need you to stand up to ED as they do not have the strength to do so themselves

12. 3 meals and 3 snacks per day (supervised) - do not deviate from this. Add time limits to the meals (as a guide/goal!). Ours (and the hospitals) was 30 mins for meals and 15 mins for snacks. In the early days this could extend A LOT. I made my Ds meal times the same as they'd be at school so that when she transitioned back to full time it would be easier and less anxiety provoking.

13. High calories are needed throughout refeeding with lots of full fat dairy. Some need as much as 6,000 cals with hyper metabolism, but the norm would be minimum 3500-4000 cals (for you to track not your child)

14. When they know you will not negotiate, I promise you will see the weight lifted from their shoulders... If only for very short periods

15. BE THE CAGE that keeps ED away from your child

16. When food is eaten be mum / dad again and have cuddles if they'll let you

17. 24/7 supervision - Some carers need to sleep with their loved ones - this will protect against them purging through vomiting or exercise. Many patients will exercise alone at night for hours on end when nobody else is awake.

18. All sport may need to stop in the early stages, and
for those who compulsively exercised this could be long term.

19. Be consistent, consistent consistent!

20. Don't congratulate them after a meal or say 'well done' - just cheer inwardly! Likewise when (for girls) their period returns!

21. Remove the weighing scales from the house. Many had to remove mirrors too.

22. Recommended reading: When Your Teen Has an Eating Disorder: Practical Strategies to Help Your Teen Recover from Anorexia, Bulimia, and Binge Eating 
23. Be prepared for resistance, and lots of it! You will find your own way to manage this, but NEVER back down. Any compromise is a win for ED. Remember, you have to see the beast to slay beast!

24. Making decisions / choices is extremely difficult for them (painful to watch). This is true in areas outside of food too. If you've tried to hand over some control of a meal or snack and notice that they are struggling, that is an indication that it is too soon and that you need to be making those decisions for them.

25. Sometimes distraction helps during meal times. That can come in the form of games,TV, music. Whatever it is you control it and it only continues with eating.

26. Lean on us - you have 24/7 support here as FEAST/ATDT  is international

27. In some cases FBT isn't an option, generally if there are comorbids such as ASD and BPD (Borderline Personality Disorder) . It may just be that FBT needs to be tweaked, or that a different approach is needed. There are many here who have found ways to work around those comorbids or who can advise on an alternative approach which worked for them.

Hope this helps! Best of luck!

Food is the medicine. Recovery is possible.
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tina72
Just to add to this discussion:
https://tabithafarrar.com/2015/12/veganism-and-eating-disorders-lets-be-frank/
https://tabithafarrar.com/2016/06/back-veganism-eating-disorders-conversation/
Keep feeding. There is light at the end of the tunnel.
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Ronson
Hi 

my my daughter is vegetarian and was well before her Ed onset.  We have refed on a vegetarian diet.  I would have found vegan hard to be honest - we rely on a lot of cheese and ice cream to get calories up.  We needed around 3000 calories a day to get weight up.  

I wish you all the best - I often feel guilty that I have done things wrong when I read this forum 
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tina72
Ronson wrote:
I often feel guilty that I have done things wrong when I read this forum 


Ronson, I think it is very important that you said this and I want to add that there is not ONE RIGHT way to refeed and to decide what to do. Every family is different. And it is very different if the vegetarian diet is something the whole family did for years before (and therefor is NOT ED related) or if the ED child is the only family member that asks for vegetarian food because she thinks it is "healthy" and "light". Many kids start their way down the rabbot hole with the vegetarian-vegan-nothing at all downspiral (my d did that, too). But that does not mean that it is not possible to refeed with vegetarien food. It is just more work and much harder to get the calories together.

We all did things different from the manual and there is no right or wrong. Please do not feel guilty about that. Your d is doing well and that is the proof that you did it right.
Keep feeding. There is light at the end of the tunnel.
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melstevUK
I don't think there is any one right way to get a recovery - but the less weight going on initially at the onset of treatment means the journey in all probability will be much longer.
It is very difficult to argue against veganism/vegetarianism when our children are passionate about animals - but if we are to support them we must ensure at least that as many quality fats get into their diet as is possible. 
My own d's recovery after eleven years included giving up the vegetarianism (which was nearly vegan as there was so little dairy in it) and she confessed to feeling that her brain needs animal fats.  The compromise she now makes is by not eating lamb or pork, beef only occasionally and chicken or fish.  She is still passionate about animal welfare and in principle supports veganism but feels it is not right for her if she is to stay well.
That viewpoint was reached after a long duration of illness and weariness at not being like her friends, as well as being too ill to be able make calculations at work regarding meds for her child patients.  
However normal or healthy vegetarianism may appear in childhood or early teenage years - there is a huge link between vegetarianism and the onset of anorexia nervosa and a failure to obtain the amount of calories/nutrition required for growth.  As for many other children, my own d's descent into anorexia coincided with lessons about healthy eating and not wanting to eat animals any more.  Knowing nothing about eating disorders, I just drifted and went along with her wishes while she slowly went downhill because she wasn't meeting her growth targets.  

I am not commenting to make judgements or give advice, only to state what my and my own d's experience has been.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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tina72
"My own d's recovery after eleven years included giving up the vegetarianism (which was nearly vegan as there was so little dairy in it) and she confessed to feeling that her brain needs animal fats.  The compromise she now makes is by not eating lamb or pork, beef only occasionally and chicken or fish.  She is still passionate about animal welfare and in principle supports veganism but feels it is not right for her if she is to stay well."

Same here. My d loves animals but once she realised that vegetarian/vegan food also kills animals ( especially the big soya farms are a big problem and any kind of agriculture kills animals that live there) she decided to only eat organic raised meat and eggs and diary to support that kind of agriculture although it is much more expensive here and we therefor eat that not very often (about 2 times a week).
It is often a kind of religious discussion about that and the real background is not seen. It is often the same kids that want to be vegan or vegetarian because they love animals that have pets in the house and that is often not an example of animal welfare.

30% of their intake should be fats and that means for us around 100 g a day which is very hard to get together without animal fat. I think that is the big question: is she able to gain about 500-1000 g a week with that diet?
Keep feeding. There is light at the end of the tunnel.
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