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

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tmw23
This is a long post but I wanted to share our story because it is isn’t typical. I’m hoping it might give some other families hope when the typical course of treatment doesn’t fit their child. I’m not suggesting that our experience is the ‘right’ way to go for anyone but us.  I just want to encourage flexibility in thinking.

Our family has been on this terrible eating disorder journey for approximately 2.5
years. I am delighted to say that my 16 year old daughter has been weight restored for several months. She looks fantastically strong and healthy, has had a period, is able to exercise again and is independent with her food. She is still eating 6000 calories/ day to maintain due to hyper metabolism. She has a long way to go to be fully recovered but her body is on the right path. 

I’m writing this post because her recovery has been a bit atypical. She has insisted on remaining vegan throughout this whole ordeal. She out-stubborned both her inpatient and outpatient eating disorders team. They tried everything to force/encourage her to at least become vegetarian.

We were told at discharge from the inpatient program that she would not recover without further treatment and if she stayed vegan. She was excluded from several treatment options because of her diet, including a Day Treatment program and a voluntary residential care program. The inpatient program wouldn’t keep her because she was no longer considered acute but she wasn’t severely ill enough for a mandatory residential program. 

We were left completely overwhelmed and in despair with the idea that there was very little hope for our child. We had an outpatient team to support us. They saw her twice a week for months and agreed to support her continuing on the vegan diet as long as she continued to gain. 

Our first months at home were the worst of our lives - I’m sure a common experience. When her calorie needs kept increasing, we couldn’t believe it. But she’s doing it! 6000+ calories a day - of vegan and gluten free food (the gluten free is medically necessary).  

She fought for control and independence with her food choices and prep very early on. In consultation with her ED therapist, she gradually started to get more control back much earlier than is usual.  Her level of cooperation improved as she regained her independence. Eventually with the conflict at home constantly increasing, the therapist agreed to give her a 2 week trial of managing her own meals completely. This was with the understanding that if she didn’t gain weight, I would go back to controlling all meal prep and supervision.  

She passed with flying colours and continues to choose and cook most of her own meals.  Not ideal from a family meal perspective but it works for us.  She eats lunch with friends at school but because of severe misophonia (sensitivity to certain sounds) eating together as a family is not a goal for us. 

Again, I do not want to downplay the importance of not restricting foods.  I understand that in general, veganism is not a healthy choice for people with eating disorders.  I also know that for my daughter, it was the only way to get her eating again. 

I know that ongoing parent involvement in meal prep and food choices is crucial for recovery. I did it for months. I also know that for my daughter, once her state of mind was such that she wanted to stay healthy, she did much better when given almost complete independence. 

I do know that being vegan and gluten free is a restrictive way of eating and puts her at risk for her ED to reappear. I also know in my heart that I cannot make her stop being vegan. I sincerely hope that she will consider adding in some non vegan healthy food options in the future. 

Ok so the point of this - everyone is different. Maybe we need to relook at the vegan issue for people with ED. Maybe some people are ready to regain control of their eating sooner than others. I’m not recommending anything other than to stress that not all kids are the same. Our child wasn’t improving in the strict mold that the system uses.  She is thriving now. 
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Enn

tmw23,
Congratulations for a job well done! It is wonderful to see these kids getting better and doing well!
Thank you for posting your story. It adds to the narrative of EDs.  

tmw23 wrote:

 I’m not recommending anything other than to stress that not all kids are the same. Our child wasn’t improving in the strict mold that the system uses.  She is thriving now. 

I think that is the big lesson here; that all are different. I wish there was a magic recipe for all, but again and again and again, I  have seen that all are unique. We each find the road that gets us where we need to be. And the "right" road for me or you are not necessarily the same.
So nice to hear from you and that d is doing well.

 

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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melstevUK
tmw23,

Great news and well done to both of you!

"Maybe we need to relook at the vegan issue for people with ED."

I absolutely agree with you and in the UK I know that clinicians are now considering the need for having vegan diets in ed units.  I think this reflects the fact that veganism is becoming mainstream because of the huge concerns around animal welfare and political beliefs that animals should not be used for purposes of human consumption.  While it maybe does not sit easy with ed treatment - ultimately if weight gain and eating return to normal, I for one see no problems with the issue of someone remaining vegan.  In time your d may decide to let it go but at the moment, if she is doing well in her recovery I would not worry.  The fact that there is more vegan 'fast food' - vegan sausage rolls boosted the profits of a sandwich chain in the UK this past year  - is available, means that high calorie vegan options are now available more than before.  
Very happy for you. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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ValentinaGermania
Congretulations on her very good progress up to now!
I would like to add, especially for those in the dark days and at the beginning of their journey, that it is really unusual what happened in your case and that I personally would not dare to use the word "recovery"  in such an early state just some months after WR (even if you call it several it sounds not to be "years").

Recovery from ED normally takes years. All that happened in your case (also with giving back control early and it worked) is very unusual and it is not very possible that it will happen in many other cases. Just to give those in the early stages an idea that this might not happen in their homes and that that is normal.
Keep feeding. There is light at the end of the tunnel.
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tmw23
I agree, as I mentioned in my post I don’t think that our girl is completely recovered - but she is weight restored and has been stable for many months.  There is much more to recovery and though I hate to think about it, I know that the risk for recurrence of the ED is a possibility.  
My reason for sharing this was simply to make the point that not everyone fits the mold that the ED programs use.  Many aspects of the programs were helpful and necessary at the beginning of our journey but in the end, I think the flexibility of our outpatient therapist made a huge difference.  She listened and heard what my daughter was saying, let her try things her way with safeguards in place, and it paid off.  I completely agree that this is not a typical path.  We are still in the middle of the journey (hoping beyond hope that we are over the hump) and appreciate everyone’s support.  
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bub1
What wonderful news tmw23!  Congratulations on the progress made.  It sounds really positive.  And thank you for posting.  I think the need for flexible thinking is important with this horrific illness; something the moderators on this forum are very good at emphasising.

Your story resonates very much with ours.  Our daughter was diagnosed with RAN 2.5 years ago.  She is now 17.  On diagnosis, when we learned about fbt, I was determined to do everything "right".  We read everything suggested and tried to follow all the recommended approaches.  Some worked and some didn't.  It was a good place to start.  But my daughter, like yours, is a committed vegan.  She feels veganism is a fundamental part of her identity and everything from her clothes, make up, tooth paste and food is ethically sourced.  The horrific trauma of persuading her to eat was excruciating.  I don't think we could have dealt with the additional trauma of persuading her to eat non vegan food.  And in any case she utterly refused.  We did not want to refeed her on a vegan diet and it is not an approach that I would recommend.  But in our case it seemed the only manageable option.  My daughter too is doing well.  As Melstev points out, veganism is becoming more mainstream and, with increasing numbers of young people becoming vegan, this will become a more common issue for carers.

Wishing you, your daughter and your family all the very best for the future.
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Foodsupport_AUS
Thank you for sharing tmw23. It is great that your daughter is doing so well. The issue of veganism does raise issues all the time in this community. The really hard part is to determine what is truly fully recovered. Just regaining weight and not having restrictive eating is not full recovery. It is about the thoughts that go with it. Breaking down restriction of types of food just makes it all the harder. 

The daughter of a close family friend became vegan at 13 along with a number of her school friends. She rapidly spiralled down hill and was diagnosed with AN a few months later, hospitalised for medical instability. Like many with the illness she denied she had AN, and willingly increased her intake to prove everyone wrong. She continued to gain weight on a vegan diet but with many ED features, controlling the home cooking, significant anxiety issues etc.. It is now more than five years later. She remains vegan, she appears to be a healthy weight - appropriate to her previous build. She is less controlling of the family food, but still relatively so. She continues with anxiety. She has frequent issues with both B12 and iron deficiency and has had to have injections for this. So hard to know is this true recovery. Would her "recovery" be complete if she was eating a non vegan diet. 
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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tmw23
I agree, it’s  so hard to know what is what with veganism. I guess my feeling is that we really have no other choice than to support this.  She would not eat non vegan food - not in hospital, not under threat of severe consequences at home. She was not eligible for any other support.  We saw her motivation to eat increase when we agreed to trial vegan and then huge progress after that.  
I know it’s not ideal and believe me, I’d change it if I could, but what I want people to understand is that supporting this was our best (only) option. None of the programs or agencies could offer us anything else that would help.  
I would wager that many people recovering from eating disorders fit the profile that you described. Vegan or not. 
I’m not trying to promote veganism as a preferred option, just suggesting that it may be a reasonable choice for some people. Or possibly the only choice that some people are willing to make.  At the very least there needs to be more discussion and research about options for families who find themselves in this situation.  
For now, I have to believe that we have supported our daughter in the very best way that we could. I’m also choosing to believe that she will continue to recover even though her path looks a little different than the typical one.  There are no guarantees for any of us dealing with this horrible disease.  
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kazi67
Tmw23
so glad to hear your d is doing well
my d became vegetarian at the start of her slide down the rabbit whole
Before AN was diagnosed I respected her choice but once AN was diagnosed and we started the refeeding there was no way I could get her weight up on a limited diet (I did home cooked meals and didn’t look into the processed vegan options though)
i decided whilst she is under my roof and care she can eat what the whole family eats 

after a relapse she was admitted IP, there was also no vegetarian options in her hospital
iron levels, calcium, bone density etc is also a concern and I hope your d has had her bloods checked 
Another girl we know who was ill when she was younger is now 22 and is having all sorts of back issues/osteoporosis/pain  from restricting whilst she was younger (she now warns us, and only now can see the damage she has done to herself, its so very sad) 
now  my d is home and eats a “normal diet” along with the rest of the family 
our mantra was this is a “normal meal” and it is to be eaten 

i agree that flexibility is important, but also depending on how severe the ED is, choices 
Unfortunately need to be taken away for some 
each case is different and we all find our way and we all like to warn of where/what we learnt or where we went wrong 

2 1/2 years after dx my d is doing ok
im still watchful and worry it could come back if she restricts in any way 

My d is no longer a vegetarian
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Foodsupport_AUS
Quote:
For now, I have to believe that we have supported our daughter in the very best way that we could. I’m also choosing to believe that she will continue to recover even though her path looks a little different than the typical one.  There are no guarantees for any of us dealing with this horrible disease. 


Absolutely. I am sure you have supported her in every way possible.  Eating disorders definitely don't have a one size fits all treatment or treatment outcome. If we accept that some people need to be re-fed with NG feeding or supplements because the illness is too strong, then feeding on a 'restrictive diet' of any sort may be markedly better than any alternative. Home re-feeding is impossible for some. My D for the record did not eat any meat other than fish for seven years post diagnosis. She simply wouldn't start a meal at all if there was meat. She would drink a supplement with larger calories or have an NG tube instead. In the end it was easier/better to not try with the meat. There are lots of work arounds. She now has included meat back in her diet, she still denies it was truly a part of her ED, rather to do with her love of animals. She now eats limited meats, tries to make sure they have been ethically cared for etc.. Why meat now? Her boyfriend eats meat. 
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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Becs
Wow @tmw23 Your story is an inspiration - we are also refeeding as vegan (as she was vegan for 3 years prior to ED) and it is great to hear that your D is doing so well. I've posted a couple of times about the vegan aspect and I think my D's experience is worth adding to the narrative. So we attempted FBT after diagnosis. We failed, not because of the vegan diet, but because we could not get full control over food without blanket refusal to eat. There was also severe exercise compulsion. She refused all food and water once she was told she was going to IP, and had to be refed by NG. So that isn't vegan but she had been sectioned at this point and had no choice. We got her to see it (and Fortisip on the few occasions its been needed) as medicine. Thank God for that because they saved her life. The dietician at her IP unit would only refeed as vegetarian and I had so many sleepless nights over this. However, she was allowed 5 fear feeds (eggs, cheese, milk, yoghurt, butter) so her diet was ostensibly vegan. She has gained at 1kg+ per week and is now at 90% weight for height. She eats more volume than the other ED patients and knows it. I think this has given her resilience in recovery. She is eating 3 yoghurts when everyone else is eating 2. She is happy to do this as she sees at as necessary in maintaining her ethical choice. 

So traditionally with fear foods, you must start re-introducing them. We have been able to have a really positive conversation with the IP Dietician about the value of doing this. She produced an absolutely amazing evidence-based report about MY D's veganism and MY D's ED. She examined it from several angles, spoke to everyone involved in her care (including us) and concluded that she is as confident as she can be that my D's veganism is not a factor in her ED. She has consulted with external professionals, including her clinical supervisor who has worked on some of the latest research on veganism and ED. As you say, veganism is now pretty mainstream with plenty of high cal, tasty options. I have begun swapping out some of the 'healthy' IP snacks for hazelnut chocolate truffles and potato waffles to lots of 'yum yums' from my D! We supplement (always have even prior to ED) with an excellent multi vit and Omega 3.

As with any person in recovery, things can backslide fast and if there is any hint of veganism being used to restrict calories, then we will reexamine our position. But for now, things are good. 
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Carla
It’s a wonderful feeling to see our kids getting better. Congratulations to all of you and principally your daughter. She is a very strong girl

My daughter is pescatarian and we are working with it. She has been improving within 3 months of starting treatment. She became bulimic in July 2018. I’m always afraid she is hiding it well, but the team at the ED clinic is happy with her progress
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Suzanne
It’s always heartening to hear positive stories. I so appreciate you willingness to share the experience you and your family have had. It can be hard to express even a drop of “rouge” behavior.  I think your willingness to dare and try something not fully support is courageous if not desperate. And obviously, we are all thrilled that your choices are paying off well.  Flexibility is not built into FBT.  And I completely agree with you that there could be more room for individuality in treatment.  I appreciate you even risking to tell your story in this safe forum.  I am a firm believer in FBT and I hope that the treatment modality continues to evolve. (Including changing the “T” from therapy to treatment. A much better description...)
love and light!!!
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melstevUK
 Suzanne

"Flexibility is not built into FBT. "

I think you hit the nail on the head - flexibility is not built into FBT and neither is it built into the world of ed treatment.

We are still at a stage when clinicians believe in a 'one size fits all' approach when recovery is different for every single person.  Of course, nutrition and regular eating along with weight gain have to play a part in the treatment of an patients but some families and patients can support a more rapid weight gain regime, others need to take things more slowly, comorbids have to be considered - every single patient and family and situation are unique and a sensitive and talented clinician would be able to focus on the patient's and family strengths and run with them.

My d is fully recovered now - a long time coming - but these illnesses which generate huge rigidity in the patient are often countered with the same rigidity from a clinical team.

We still have a long way to go from being able to individualise treatment - I really hope that some day it will come.


Believe you can and you're halfway there.
Theodore Roosevelt.
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H2OMom
This is interesting to me - my 12 yr daughter has harm OCD and wanted to be vegan, then she also became restricted in her eating quantity/desserts/sugar. I do think her veganism is separate from her ED (I do think it is part of her OCD). But, getting treatment and support is hard. She is inpatient now and stuck using the NG tube - she doesn't even trusts/want the nutrition. It's really frustrating when she says she does not want to get better. FYI, she was in a regular hospital for the past several months and her weight is normal, albeit it did not come from a place of recovery so she is having a hard time with how her body looks. I'm really concerned that the program is going to kick her out if she does not accept the nutrition soon. 
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Enn
Hi H2OMom,
Welcome to the forum. When our kids are really ill with their ED, their brains do not work well so she cannot trust or want the food. That is part of ED, It does get better with time and weight. They also have no insight into how ill they really are that is call anosognosia:
https://www.verywellmind.com/anosognosia-and-anorexia-3573545

If you wish, you can tell us more about your d and we can might be able to give advice or we are here too for moral support. Whatever you need we will try to help as best as we can. 
Is she under an ED specialist's care? Where are you located? 
This illness takes a long time. Months or years of proper nutrition and then some and then it takes time, a long time,  for the brain to heal.

Warm regards,
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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ValentinaGermania
H2OMom wrote:
This is interesting to me - my 12 yr daughter has harm OCD and wanted to be vegan, then she also became restricted in her eating quantity/desserts/sugar. I do think her veganism is separate from her ED (I do think it is part of her OCD). But, getting treatment and support is hard. She is inpatient now and stuck using the NG tube - she doesn't even trusts/want the nutrition. It's really frustrating when she says she does not want to get better. FYI, she was in a regular hospital for the past several months and her weight is normal, albeit it did not come from a place of recovery so she is having a hard time with how her body looks. I'm really concerned that the program is going to kick her out if she does not accept the nutrition soon. 


Recovery from ED does not only mean to get the weight back no matter how and then they are better from day x.
It is also needed to fight for normal eating and no fear food and fight all OCDs that are common with ED. As long as she is not eating normal food regularly and with at least 30% fat intake and no fear food any more her brain cannot start to recover.
Keep feeding. There is light at the end of the tunnel.
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H2OMom
I am from New England (for being a medical mecca, we are very limited on quality ED programs here) but she is currently inpatient in North Carolina at an ED program. She will be 13 in october. I agree, she won't recover in her brain until she eats normally. Sometimes she has beautiful insight but is having a hard time applying it to stressful situations.

I have a logistic question as this was my first post - how do we get notifications when someone responds? I had to go searching for my comment to see if anyone responded...
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sk8r31
If you want to follow a topic or thread (even your own), just click on the little 'bell' icon that is at the top of the page.  It will subscribe you to that topic. Then you will receive any subsequent replies.
Sending warm support to you.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Yogi13
tmw23 and all who responded here,
Just like in the FBT literature-recovery is not necessarily linear and timely.  Just like getting there is not.  It is individual and no two people are the same.  I like hearing stories from people who were intuitive enough and strong enough to forge their own path of recovery successfully.  My d is not a vegan or a vegetarian, but she does have eating restrictions (no dairy, no nuts, and we have managed to get her back on her growth chart with behaviors disappearing.  We still have a road to go, and I'll say it again, I am so grateful for all of you.  

xx
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debra18
H20mom you are right there are few places to go for treatment on the east coast that are up to date and knowledgeable about EDs. The program at Columbia University in NY is relatively new but I think some people had a positive experience with it. If you are willing to travel farther you could look into USCD in CA or ERC in Denver. The program in NY is free because it's still at the research level. It could be that your daughter's veganism caused negative energy balance which led to ED. She may not have chosen to be vegan because of it, but maybe she wasn't getting in enough nutrition when she became vegan. 
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Yogi13
H2Omom we are currently in program at Mount Sinai in NYC. They do have a research study going on (at least they did in May when we started), that is free.  We opted not to participate in the research program, so we are paying out of pocket (very expensive, but worth it).  The good resources are few and far between even in NYC.  
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debra18
It is true good resources in NY are lacking. That's why I refed my daughter myself. I hope one day this will change.
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ValentinaGermania
debra18 wrote:
The program at Columbia University in NY is relatively new but I think some people had a positive experience with it. If you are willing to travel farther you could look into USCD in CA or ERC in Denver. The program in NY is free because it's still at the research level.


In fact that program has been around for a long time...since 1979: https://www.columbiapsychiatry.org/research-clinics/eating-disorders-clinic
 
A friend of mine has a girlfriend that went there in 1986. She developed AN her 1st semester in college. Columbia's program is unique in that because it's a research program, they don't have all the hassles of dealing with insurance companies. They can keep people until they are ready and at a good weight.
Keep feeding. There is light at the end of the tunnel.
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H2OMom
Thank you everyone. We live in the Boston area. She is currently in NC at Veritas. It's only been 3 weeks but they are saying that because of her safety behaviors (emotional outbursts, disruptive behaviors and she is on a one-to-one), they think she should go elsewhere where other diagnoses can also be evaluated. She is not disregulated all day, only at certain times - meal times, feeds, and nighttime can be hard. She has binge/purge anorexia and OCD. They say there could be an underlying diagnosis - (I am not convinced) that the eating disorder is a result of - isn't that true of many ED patients? She is weight restored (via NG tube) so she needs a place where NG tube is accepted. She does eat on occasion, not consistently to get off the tube. I am just so frustrated how people give up on her so quickly.  I can get her into a facilty in Mass that will take a holistic view of her but she needs to be off the NG tube. She's 12. Columbia program looks interesting - I will take a look at this!
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