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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Enemy1
I am at my wits end. It's been 2 year since our D - now 18- was diagnosed. At the start she got scared and that first summer - almost before we got a team in place, she regained a significant percentage - but then - STALLED out. Although SHE believes in her team I think the ED is manipulating them. I don't see much progress unless and until I PUSH the team.
I'm frustrated bc there are no communicated goals; target weight is below her growth chart number; she is making her own food choices (with a nutritionist but who Im forbidden from speaking to) and we can't ask about food choices or weight.

I am blamed by D for everything - I'm enemy #1.

Meanwhile despite not being medically in danger, she has been paralyzed by this ED and has made it thru HS only by us CONSTANTLY cajoling her out of bed or talking her down from a panic.
Although there has been some improvement the team makes me feel like im crazy even when I told them - for instance - that 1500 calories is not enough. Or that she isn't weight restored yet. they keep telling me to 'be patient' and D has to 'make decisions' or she'll backslide. And menstuation can take 'years'. Really? She thinks I'm not supportive. True - because I insist she needs to continue the gain weight. Clearly her team and I don't see eye to eye. So they win- after two years of hell. I'm giving up.
D; 18; 2 years battling; regained 80% immediately; got stuck until Family-based intensive UCSD/Ohio
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Doodle
My S is now 18 and although we were permitted to be present at his handover meeting to adult team yesterday we were told in no uncertain terms that we were no longer involved in any discussions or decisions. I objected strongly saying that as the person who continued to ensure my son received nourishment, stayed with him 24 hours a day, sat with him through all meals, picked him off the floor several times a day when he was having a panic attack, accompanied him on all outdoor activities to prevent him from running off, had put my life on hold for the last 2 years to care for him I felt that we should be acknowledged as part of his care team and was astonished that the approach was so far removed from Maudsley it just didn't make any sense. My S has regressed emotionally and is more dependent on us than he was before he became ill at 16 when we were told our input was vital for his recovery!!!! Just crazy!!! The team bedrudgingly half agreed but hid behind legislation etc. they also spent a significant amount of time telling him he didn't need to continue with treatment if he didn't want to! fortunately my S is happy for our continued involvement at this time but I felt a dangerous seed was planted yesterday....
19 year old son became ill with AN and compulsive exercise at 16. Been through CAMHS and AMHS and making good and steady progress. Compulsive exercise a huge issue which he continues to battle. Feel like we are starting to emerge from a terrifying 3 year nightmare! 
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K63
I understand how difficult it is I say to my friends I want this nightmare to be over, because that's what it's like.My d was diagnosis end July 2014, I finally cried to my GP for a referral to a psychiatrist , as we had noticed her going down hill since February & tried our best to stop it. She is now 18. She ended up ip for 4 months and on discharge the nightmare continues , but things have settled a little. She isn't weight restored Yet has far to go but is now eating meals and two snacks with full supervision . It's rough at times. I felt like giving up but got lots of support & encouragement here on forum. Keep going each day is a new day . Try to get a little time with good friends, mine have helped me stay sane.
Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
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BattyMatty_UK
Hi Enemy1, I soooooo identify with what you are describing because this was the situation for so long with me and my son (diagnosed at 15, now 21 and recovered). You may find my blog helpful because it describes what we went through and how we came through it - you can get the PDFs through the link below.

I was Enemy #1 - "Bib Bad Mum", I used to call myself (in fact it's the title of one of the chapters in my book) - for ages. Our UK-based treatment team (CAMHS) and the ED against me. What a battle we had until my son eventually broke down and confessed that he'd been pulling the wool over their eyes and things gradually began to improve.

I can't emphasise enough how supportive and vital this forum was during that time. Goodness only knows how I would have coped without it. Indeed I don't think my son's recovery would ever have happened, to be honest.

If you click back to some of my earlier posts here from 2010 you will read about my frustration! It wasn't an option for us to change treatment teams, being based in the UK and at the mercy of the NHS, so really it took some private meetings and correspondence between me and the treatment team head - the psychiatrist - for me to get through to them. I stuck to a strict agenda during our meetings; had to be forceful, etc, but once they understood that I was a vital part of the treatment team and my son's recovery, things improved between us.
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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Foodsupport_AUS
Welcome to the forum. Sorry that you have been on this journey for the last two years and feels so frustrated. I have also had the frustration here of feeling that I am the crazy one for wanting to push ED harder, get weight on faster, not allow things to slip back. So far I have not been shut out by the system, we are currently all private so I am paying the bills. That being said all treatment for over 18's here is voluntary. She has to agree to it, unless she is critically unwell. To that end we are stuck to some degree trying to cajole my D into agreeing what needs to be done. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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Sadmom
I hear you, Enemy1, 100% and welcome to the place that no one wants to be.  

I am also Enemy#1, blamed for everything, told I am hated, that D doesn't want to live with me, etc. It's enough to break a mother's heart.

She is also in charge of all her own food, I am not allowed to give input (although I do, all the time, which makes ED good and mad) and my D is also only barely in her range, which is too low anyway now, since it looks like she has actually now grown since she got sick.

I don't think there is anything at all about dealing with the 18+ ED that is textbook or fits FBT or any other treatment protocol.  Even with leverage like money or college, one simply cannot force open the mouth of a young adult. They do have to WANT to open that mouth, and most of the time, they don't. Ugh.

I don't know how many times I have been told that it is the ED talking when D says she hates me, so I commiserate 1000% with you Enemy1. It is just plain lousy.

I hope today is a better day. One foot in front of the other. It's all we can do.
Sadmom
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sk8r31
Welcome to the forum, though sorry you have a need to be here.

What leverage do you currently have with your d?  Is she financially dependent on you?  Does she use your car?  Do you pay for a cell phone?  Is she motivated to go on to higher education?

All of these things can be used to get her to agree to your support in helping her through to recovery.

There are some definite challenges to working with a young adult, but there are a number of folks on the forum who are in similar circumstances.

We endured 3 years of inadequate care and professional support, and let our 'team' go one-by-one.  We found experienced, knowledgable professionals, up-to-date on the latest evidence-based treatment for EDs, as well as going to the UCSD 5 Day Multi-Family program.  Following the program, we traveled 90 min each way to continue good FBT support.  

The change in treatment providers was critical for success.  We had a dietician that colluded with our d's ED, and a T who told our d that her ED was 'a result of her dad's anxiety'.  

Our d did not want to go to UCSD.  She did not want to change providers.  We had to provide the leverage to getting her to agree to go.  Fortunately, she was highly motivated to go to college and this was the reason she (reluctantly, angrily) went to the UCSD program.

There, we learned about contracting, and used that to good advantage in getting her weight restored, and then later off to a good start at college.  She's happy, healthy and finishing up her 3rd year there....life is good, and about a million percent better than it was.

Figure out what leverage you might have in getting your d to see professionals that will support her and your family.  You need to find a team who will not blame you for your d's ED.  Use leverage to get her to sign agreements with treatment providers to include you in the discussions and to receive info about her condition.

Sending you warm support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Psycho_Mom
Hi,
If you feel like giving up (and believe me I do understand the feeling!) then I'd say:

give up on your "treatment team", not on your d.

All the things you've mentioned your team has instituted:believing your d needs to "make decisions"; that slow wr is OK; that 1500 cals/day is OK; that parents are left out or part of the problem; these are all old school therapeutic ideas that have been widely discredited because they are not based on any actual science or evidence that they work, and in fact, as you have seen, they don't work.

From your post, I think I see someone, however, who is more knowledgable and capable of returning your d to health:
you.

You are correct that returning your d to a healthy weight as quickly as possible will give her the best chance at recovery. Many studies support this fact.

You are correct that 1500 cals a day is ridiculous. That is a weight loss diet. People eating for recovery generally need much, much, much more than that.

You are correct that menstruation doesn't need to take years. That's nonsense. IT returns in nearly all cases, when they body is no longer in starvation mode. (The return of menses, however, does not necessarily mean one is at a healthy enough weight for brain healing. Sometimes menses never stop, sometimes they return at a very low weight.)

You are correct that a responsible, effective treatment team would be able to set and communicate goals. 

You are correct that target weight s/b at LEAST what is indicated by growth charts.

A wide variety of foods is also associated with better outcomes (several studies on this as well). so you are again correct that letting a sufferer choose her own meals is unlikely to accomplish this.

What you may not know is that it common for ed sufferers to vilify the person who is most likely to get them to do what they are most afraid of doing: eating. It is common for parents and most often mom to be sworn at, yelled at, emotionally rejected, etc. My d threw pancakes at my head and hit me with books and screamed obscenities. I tried to consider it a badge of honor: my d's ed KNEW that I was going to fight and fight and fight and that I was going to win and that I would not stop until she was well and healthy, and so it, yes, made me Enemy #1. 
(MY d has been wr for two years, and she and I have a close, supportive and happy relationship now. The antagonism dwindled and vanished after wr.)

Give up on your team, yes. They sound useless.

But know that there are other options.  Use every scrap of influence, leverage, knowledge and instinct you have (and you may find you have quite a lot) to get food in to your child. If you read all around this site, you will find lots of effective, evidence based information, and suggestions and support from parents and caregivers, who know what you're going through, because they've been through it and have managed, often despite ineffective, ignorant treatment providers, to get their loved ones well.

very best wishes,


D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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Enemy1
sk8r31 wrote:


The change in treatment providers was critical for success.  We had a dietician that colluded with our d's ED, and a T who told our d that her ED was 'a result of her dad's anxiety'.  

Our d did not want to go to UCSD.  She did not want to change providers.  We had to provide the leverage to getting her to agree to go.  Fortunately, she was highly motivated to go to college and this was the reason she (reluctantly, angrily) went to the UCSD program.

There, we learned about contracting, and used that to good advantage in getting her weight restored, and then later off to a good start at college.  She's happy, healthy and finishing up her 3rd year there....life is good, and about a million percent better than it was.


Sending you warm support,
sk8r31


I wish I had heard this advice a year ago - I feel I have failed her by letting her stick with them. Does anyone know any studies which point to menses starting after the proper nutrition is reached?
D; 18; 2 years battling; regained 80% immediately; got stuck until Family-based intensive UCSD/Ohio
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Torie
Enemy1 wrote:
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Does anyone know any studies which point to menses starting after the proper nutrition is reached?


Not exactly what you asked for, but here's a post by IrishUp on a related topic:

The emerging understanding is that the endocrine imbalances caused by malnutrition, can be severe and enduring. The truth is that some small minority of patients do not regain normal menses, and we do not really understand why. The VAST majority of people will resume (or start), but the process of getting there can be arduous. My impression from the clinical literature is that it is often more complicated when the AN interfered with menarche - the normal start of menstruation.

Rhian, my understanding of working within the NHS system, is that you may have to agitate pretty loudly to get the work up and medical services you need to fully evaluate this. The lack of normal periods in a teen/ young adult who should be having them is really quite serious and has long term health implications including osteopenia/osteoporosis, impaired fertility (for those who want children), and elevated risks for cardiovascular disease and some cancers. All of these have important implications for both longevity and quality of life / future functionality. I underscore these points, because it seems to me that this particular issue is often given short shrift by clinicians.  It is absolutely 1000% a problem that merits priority treatment in the here and now - early disability due to brittle bones is common in women with a prolonged history of amenorrhea. It's something that really should be more aggressively prevented than is often currently the case, IMO. This is not just a "lady bits problem".

The unknown can be confusing and overwhelming. My personal strategy is to get as much good information as I can, and from there try to start with obvious things about which I have some control, and systematically work towards the more complicated that requires more support.  The very first thing that needs to be done, is a full medical workup including bone density scans. Ruling out anything undiagnosed is the first order of business, as is understanding her baseline bone health.

Assuming that there is nothing otherwise unusual going on, the thing that is highest on the Likely Suspect list, is persisting latent or low-level (subclinical) problems regarding anorexia. The most obvious and common culprits, and those that might be the most straightforward to address (though not necessarily *easy*) are these:

1. She is not eating or absorbing enough overall calories;
2. Her diet does not have a high enough fat and high-quality protein content;
3. Her activity level is too high;
4. Stunting due to amenorrhea and malnutrition.

I will link to references and further reading on these points, and they are not discrete seperate problems, but frequently overlap to a high degree. I'll leave you to read more in depth at your own pace, but I'll do my best to briefly outline the major issues. Let me start with #4, because it sounds like your d is at very high risk for this, given the history you relate. 

#4. I have written a longer post here, and indeed that whole thread is worth a read. But basically, most women grow to full adult height after they start menstruating. Malnutrition severe enough to stop that process from happening, is also severe enough to stop long-bone growth, and without the normal hormone functions, resumption of the normal growth pattern is much much less likely to be happening. The problem is, the body really WANTS to be the size, shape, and body composition it is genetically programmed to be (the embedded link has a fuller discussion of stunting and catch-up growth in the setting of AN). So one thing that is highly probable, is that your D's body is looking for a lot of extra nutrition still, in order to fuel catch-up growth. Biologically speaking, your d's body might be getting plenty of fuel for the size she IS, the problem is, the size she IS, is short of where her genetic blueprint is meant to be. Catch-up growth happens well into the 20s, and we see it on the forum here over and over again. If there is a genetically delayed growth pattern in your family, that might also be interacting with the malnutrition history. 

The take-home point is this: as long as she is not within the shape and size range her genetics are programmed for, her body will stay in Starvation Mode, and she is unlikely to spontaneously enter menarche (first period) under such conditions. Leading us straight into 

#1, 2 & 3. There is a complex interaction between sustained nutrition, previous starvation, and hormone function. We don't understand it all.  This thread has a terrific discussion, including links to resources. 

  • Many people with AN remain hyper-metabolic for many many years. This in turn means that what looks like enough food, is actually NOT enough for them.
  • Many people with previous malnutrition often seem to have altered sensitivity to the content of lipids and (animal) proteins in their diet - they do not do well as vegetarians (although pescetarians and ovo-lacto seems to be fine. Animal proteins have micrionutrients that are not found in plant sources, or not absorbed easily from plant sources).
  • Many dietary recommendations for AN history shoot for a 30/30/40 ratio of percentage of calories from proteins, fats/lipids and carbohydrates  (respectively). Being low on the protein side has negative implications for muscle and bone mass, being low on the lipid side does seem to interact with hormone levels.
  • There is a lot of data that suggests that people who had malnutrition as children, that interrupted puberty (amenorrhea counts), may need to maintain bodily lipid compositions and or a weight up at the top of their range. Thus it is often the case that what looks like weight restored, is actually somewhat too low.
  • Many people with malnutrition histories are extremely sensitive to activity levels, and frankly, there is emerging science that running / "endurance" activities in particular are contraindicated for people who do not maintain normal menstrual cycles.

These things suggest that in the interim, while you are sorting out whether or not there are other medical issues, there are steps you can take to "conservatively manage" what is going on. You'd probably need to commit to these for at least 6 mo, and nothing here will be harmful in the long run if it turns out they are non-contributory. In your shoes, these are what I would try:

1a. Seriously try upping calories. 
1b. Shoot for another 15lbs or thereabouts. If you go for this, aim for 300-500 extra calories per day from where you are.
2. Attend to the nutrient ratio and aim for 30% from protein, 30 from fats.
3. Make sure that the daily eating plan does not have prolonged stretches (>4hrs when awake) without at least a snack.
4. Consider abstaining from all vigorous activity until you understand more about what might be going on medically, and you have a chance to see whether there was any further growth waiting to happen.

I say a 6mo commitment, because a starved body takes a while to be convinced that the famine has ended. A head's up: prepare for some distress and resurgence of ED. Human growth is kinda "out then up". That is, when you up the calories and she DOES need the extra, it's going to show up as a roundy middle. This adipose deposit redistributes very quickly when there is vertical growth (and a little more slowly if there isn't - but it will redistribute to her genetic blueprint body-type within about a year). Most people with AN find roundy middles to be triggery. ED will like as not, pop right back up. 

This is not a reason NOT to push weight up - although that is what a lot of clinicians (and parents) do. But the distress is not the pathology, the ED is. The distress indicates that latent ED is not as "gone" as we all would have hoped. It is feedback that SHE needs more support (and that you are on the right track).  So plan for how you can help her through this. I know that there may not be a lot of support for this initially from your medical resources, but it will be worth it to maybe give them some of the resources I've posted in links, and discuss. They may also be more moved to be supportive if the bone density or other medical workup is abnormal. Let us know if we can help brainstorm with you.

More resources on nutrition, endocrine function, and activity:

Dr. O'Toole on Weight Restoration 2.0 

Dr. Katzman on Why is Food Medicine

__________________
IrishUp 

See also: 

http://www.aroundthedinnertable.org/post/long-term-amenorrhea-7342858?pid=1286602911#post1286602911&gsc.tab=0

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Enemy1
Torie-
Thank you for such a solid and thoughtful post. Over the past few years I have often sent my team studies from PubMed or some other documentation trying to get them to add - say - some fats in her diet. They do pay attention - but they are slow to adopt and only seem to step forward if I'm pushing. The research seems pretty clear about a direct correlation between healthy fat intake and restarting menstruation.
But they argue that pushing her to up her intake could result in her backsliding.

I'm ready for that risk.
D; 18; 2 years battling; regained 80% immediately; got stuck until Family-based intensive UCSD/Ohio
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Torie
Hi Enemy 1 - I just want to make it clear that I didn't write that post; I just re-posted one that IrishUp wrote.

Good luck.

xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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OneToughMomma
Enemy1, do not be afraid!

We, too were stuck in the public system with a team that gave control to ED. Only after we fired them were we able to help D get to WR.  I so regret all those years of hovering in ED thinking, suboptimal health, amenorrhea, pandering to ED. 

Actually regret is too mild a word.  I'm a bit bitter and really do consider it medical negligence to pass yourself off as a professional and take people's money and play with someone's health without understanding your field.  I found FBT and ATDT by Googling 'best anorexia treatment'.  NOT ROCKET SCIENCE.

As usual, IrishUp has all the science (thanks, Torie), but basically FBT is the only ED treatment that has been proven successful.  And it's wildly more successful than the 'standard' treatment.

Your D won't backslide if you don't let her.  You've got an amazing team here to back you up and help you with the roadblocks.

She will get better if you help her.

xoOTM
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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pam1962
So sorry for your struggles,been through this battle for 7yrs now and still fighting with ED. My d therapist once said to me,stop trying to control something you can't you never will be able to. "It is what it is" and accept that she's the one that has to be the one to let it go. Trust me,it's been very difficult not to voice my opinion. But seriously the therapist is so right . I'm fighting a battle that I have no control over. My d has to want it for herself. Since I have let the reins down I'm actually seeing her be accountable for her actions. Slow progress but progression. I'm still the enemy like you.


Your never alone ♡
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Enemy1
Thank you all - I was so desperate when I wrote this post 16 months ago - and support from this site has been so helpful! In the last year, D has progressed ever so slowly - but it is happening. As I have posted on other threads, we owe the turnaround to the Center for Balance Living in Columbus - a program affilated with UCSD. Not a day goes by when I don't feel grateful we went there. Ever so slow though - a year later and D has had her period only once. BUT she is now in her range and it feels as if she joining the world again. She can say with confidence that she would rather face a night at a pizza joint with her friends than stay in her room. Not done with this ordeal, but I finally see a light at the end of the tunnel. Hang in there - all of you who are still in darkness!
D; 18; 2 years battling; regained 80% immediately; got stuck until Family-based intensive UCSD/Ohio
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JustFlippinEatItNZ
Thanks for the update - I just saw your first post and can identify with it all! Haven't read my way through the thread (am just reading snippets whenever my daughter is out of the room) but it is great to get this update - reminds me that even though it takes time, things can improve.
19yo D, AN since Sept 2014. Was wt restored for a year or two but now starving again, refusing treatment or to admit she has a problem. BMI guesstimate around 13 or 14. Has left home.
Very sad Mum.
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