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

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kas_US

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Reply with quote  #1 
So for background you can read my last post about finding a therapist here...

http://www.aroundthedinnertable.org/post/how-to-tell-if-a-therapist-is-good-8125414?trail=625#5&gsc.tab=0

BOTH of those therapists were referred to me by Veritas (they have "outreach partners" of some sort that help with referrals) which by all accounts does practice evidence based care, and to be totally fair, both therapists said some good things. The one who talked about my girl not wanting to "launch" also talked about the neurobiological basis for eating disorders and the genetic component, and she also talked about how if she is just malnourished, she won't be able to process correctly regardless. The other one said, "I NEVER listen to the eating disorder!" But, she also said the stuff about unwinding the family tree and "if families are helpful." But, she also uses CBT, DBT and ACT...all good UGH!

So today I talked to ERC (the first therapist told me that they could involuntarily commit in Co, apparently that's not true though), and I actually somehow miraculously got my daughter to talk to the intake coordinator as well (she's 18, remember), and she asked my daughter all about what triggered her eating disorder and what is stressing her out and why she isn't eating enough. So when I got back on the phone, I asked her, "What is the philosophy of your treatment center about what causes eating disorders?" and she said, "well, your daughter said she experienced a stressful event...and blah blah blah control and blah blah blah family issues" (which now we're a mess, but honestly that didn't start until she had AN!). NOTHING about a biological basis. Nothing! And she suggested that I let my daughter try both of the other therapists to see which one she was more comfortable with. WTH? is that the best way to figure this stuff out?

And the worst part is that she said my daughter doesn't qualify for residential treatment because she is still eating, and she doesn't have a therapist to validate that she needs a higher level of care! so I have to take her to one of those therapists! Even though I can document from her medical doctor that she has been losing weight for the last year, and she's at 89% of her ideal body weight, and her blood pressure is lower. (well, I may try dr ravin, but she's really far away)

Sorting this stuff out is seriously making me lose my mind.

Thankful for the small miracle though that my d actually discussed some of it with me though calmly and without acting like she wanted to kill me.




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Cherryusa

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Reply with quote  #2 
Kas,

I know how you feel . We have had much of the same for years. Unfortunately, outreach referrals aren't necessarily top notch and I have my suspicions they aren't actually close personal or professional relationships which is misleading. ED programs need professionals to refer to back home after client discharge and I don't think they necessarily have the education, experience or beliefs the treatment facility had. I think they are trying to develop relationships with professionals in areas outside the treatment facility and to get referrals from the professionals they refer to. It's done even by some of the best and it is actually necessary. I have been dissapointed by some to the professionals we have been referred to after res not by Veritas however. UGH!
HateEDwithApassion

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Reply with quote  #3 
I believe this is one of the MOST frustrating and scary things about parenting a kid with ED - finding care that you know is not doing harm but is moving them to health. I spoke with ERC last year when we thought my D might need to be admitted (her ED T thought she should mainly for co-morbid issues, which of course, they don't do as a primary. T seemed shocked they wouldn't take her. That's another story.).

I thought the intake call was less than stellar and was not impressed. That is not to say that the program itself wouldn't be excellent - I've heard it is one of the better ones. But the intake was definitely not. It's frightening to hear continued talk centered around family issues. Everyone has them, but not every kid has an ED. Research is pointing otherwise, and yet, these are the foremost experts in the field and they still refer to control and family issues. Gosh. 

I'm sorry - I know exactly how you feel - mental health, including ED care sucks in many cases, and it's hard to tell which places don't suck. Please keep us informed about how things go... 



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19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
Sadmom

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Reply with quote  #4 
One of the worst of a series of bad and damaging therapists we have had was one listed right on the Maudsley site. Yep, that's where I found her when I thought the other parent-blaming therapist and team needed to be ditched. 

This so-called FBT trained therapist also shut us out, talked about 'family conflict' (made exponentially worse by ED and bad therapists IMO). After privately paying for a whole bunch of sessions, we dumped her too. Disaster.

I am jaded. I know there must be good therapists out there. Occasionally we hear about them on this site. It sure seems that there are a lot of very bad stories, of therapists doing parent blaming, or parentectomies, or calling us the food police. It happens far far too often.

Good luck. I hope you find someone helpful and inclusive.

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mamabear

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Reply with quote  #5 
I'm so sorry. I can so totally relate. For us it was the psychiatrist at the place my D was inpatient. Her name is well known in the Ed world and I had a horrific experience with her. She did NOT like being questioned, let's just put it that way.

And when your kid is sick and you start making the phone calls to these places with their shiny websites full of hope.... It is such a kick to the gut to hear how so many of them truly operate. Remuda was by far the worst phone call that I ever made.

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K63

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Reply with quote  #6 
In the early days before d was admitted the psychiatrist made me aware of what ed patients can do like water loading, putting weights on themselves etc to make it appear they haven't lost weight as my d was continuing to lose weight and on this occasion I knew by the amount she was eating she would have weight lost and would need admission . My d water loaded and had weights on and so appeared to have weight on and the psychiatrist never spotted this My h had taken her for the appointment and when he rang to tell me he had said she was ok and had turned a corner and had weight up I thought no this isn't possible and rang the psychiatrist back when I told him what had happened as she has confessed to me under pressure . As a mom you know when they are fading in front of your eyes . He then said to bring her straight away to the unit . Due to the lack of specialised units here I had no choice but I was upset to say the least and told him that I was not happy with this serious miss.
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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. 
mjkz

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Reply with quote  #7 
Quote:
The one who talked about my girl not wanting to "launch" also talked about the neurobiological basis for eating disorders and the genetic component, and she also talked about how if she is just malnourished, she won't be able to process correctly regardless.


There have been threads here too about whether or not our kids are failing to launch, whether FBT contributes to that, etc.  I think it can be a fair question.  It is definitely true that being malnourished affects how one processes things.

Quote:
The other one said, "I NEVER listen to the eating disorder!" But, she also said the stuff about unwinding the family tree and "if families are helpful." But, she also uses CBT, DBT and ACT...all good UGH!


Some families can't do FBT for whatever reason and unwinding the family tree in a disease known to have a genetic basis and run in families makes sense.

Quote:
she asked my daughter all about what triggered her eating disorder and what is stressing her out and why she isn't eating enough.


Background history is helpful.  Not everyone with a genetic basis gets an eating disorder.  I know with my daughter there were several things that triggered her eating disorder so not necessarily an inappropriate question.

Quote:
which now we're a mess, but honestly that didn't start until she had AN!


Yeah.  I guess I always made sense out of that in that if your daughter goes inpatient, she has to come back to her family messy or not and eat.  I know I can point to things that were issues in getting my daughter to eat that were uncovered when going through family history, parenting, my daughter's personality, etc.

What are useful questions to ask do you think if the above things the therapists were saying are not acceptable?  Sooner or later someone is going to have to do a history and assessment because even neurobiologically based diseases do not exist in a vacuum.  Depression is a chemical imbalance but using just meds does not produce the best results.  Medications with life style modifications and CBT/DBT all together produce the best outcomes.


kas_US

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Reply with quote  #8 
mjkz,

thanks for your thoughts. In my quotes were examples of both good and possibly problematic thoughts/questions. I don't personally care what the therapists ask as long as in the end they are not undermining me as a parent and that they are ultimately able to get her to eat. I am just skeptical of some of that because of horror stories I have read here of therapy that has separated the patient from the care of the family.

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Seabird

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Reply with quote  #9 

Nobody knows anywhere near enough about "triggers".   This should be a priority for further investigation!!   

Nobody knows what comes first, the anxiety, depression, obsessive thoughts, and at what point Wham! full blown anorexia is there.

If emotional traumas (eg sexual abuse, bullying, dysfunctional or broken families etc) were reliable triggers for anorexia then a lot more people would have anorexia.

But - what happens ?   These types of traumas produce a vast array of effects - and other types of eating disorders - and drug / alcohol issues - and abuse of animals - and dozens of other things.

There isn't any clear picture of what are reliable triggers for anorexia as far as I have read (and if I'm missing something please jump in here...)

The family DNA is fascinating for sure - my son inherited terribly lean male genes from my side of the family and it would make a sick joke indeed if I took a photo of my son, his uncle and his first cousin, because you would truly think that my son was the healthy one.   And these males including my departed dad, were all NOT anorexic, however they have all been men who ate/eat less than average, and who without exercise turn into sinewing stick men.   They are very tall and very thin.   

From my maternal side he inherited depression and anxiety.   

The trigger for my son appeared to be that he did start dieting, as many teenagers do.  Dieting doesn't lead to anorexia in most people but in those who are genetically primed to be susceptible, and teenagers going through all those brain changes anyway, it is a vulnerable time.

The chemistry of starvation also holds a lot of clues.  Right now, there is a "new diet" being talked about in our media, which is very low in kcals and is designed to put the dieter into a "euphoric" state after around 3 days.   Sounds familiar doesn't it??    Not to mention the full page article in the nutrition/health section of our capital city daily paper this year detailing every step a person should take to use water consumption to reduce appetite and speed weight gain.  it was practically an anorexic's handbook.

Recently also of interest was an animal welfare case reported by our SPCA - a severely starved dog had been rescued and re-fed.  It had been starved for a period of several months.  Physically it responded well to refeeding in care.  However, post weight recovery, it had to be euthanased due to the danger it posed to its handlers.  The SPCA reported that the psychological effects of the trauma were too catastrophic for the dog to regain normal behaviour.  But in my opinion the dog's brain had been too starved, and it was more likely the biochemical effects of brain starvation that caused similar inability of the dog to moderate it's distorted behaviour.   And in fact I don't believe it was humane to even re-feed the dog, it should have been euthanased as it was so severely starved (the worst case of starvation I've ever seen reported in a dog). 

I think there are more answers in chemistry (and hence genetic and environmental influences) than in therapeutic approaches that endeavour to gauge why your child chose to kill themselves through starvation (as was once asked of me by a psychotherapist). 






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Mother of 20 y.o. male diagnosed at age 16 with RAN, exercise compulsion, anxiety, depression & SH, FBT 4-5 mths to WR, WR now 3 yrs; suicide attempt 4-6 wks after WR,  IP 4 weeks.  Steady progressive recovery over past 3 years including support from psychologist on general wellbeing. Slow steady steps to success!! 

When your last bow is broken and your last arrow spent, then shoot, shoot with your whole heart
 [Zen saying}
mjkz

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Reply with quote  #10 
Quote:
Nobody knows anywhere near enough about "triggers".   This should be a priority for further investigation!!  


I think it is individual for each person however there do seem to be pretty clear cut triggers that lots of people mention here like:  dieting, wanting to eat healthy and cutting out foods, weight loss for whatever reason, an illness before hand that leads to not eating for a period of time.

Quote:
Nobody knows what comes first, the anxiety, depression, obsessive thoughts, and at what point Wham! full blown anorexia is there.


Again very individual.  With my daughter, it is very clear that anxiety and depression were first and then couple that with weight loss=anorexia.  I think people don't know when it happens but in hindsight can identify where there were premorbid conditions or not.

With trauma I often wonder if it is dependent on the age of the person when the trauma happens.  Most young kids don't have access to drugs or alcohol and tend to cope in different ways than teens/YA who have more access.  Just a wild guess there.


momupnorth

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Reply with quote  #11 
this is a topic I've been wondering a lot about myself.  For my daughter it very much appears the social anxiety, ocd and some depression came first.  Still not sure how all this turned into anorexia though and for her it the decent into ed appeared to happen very quickly.  She recently identified this past Easter as the 'starting point' of her eating issues.  She was admitted to hospital 3 weeks later.I am of course assuming the ed thoughts were there for quite a while before this but Easter was her tipping point.  She has not been able to tell us what the trigger was that weekend.
I have been racking my brain for triggers as we go throught his process and just can't figure it out.....

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Seabird

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Reply with quote  #12 
My point in relation to triggers is that nobody knows why anorexia is triggered by events or traumas that can lead to a wide array of different effects in different people.

Many teenagers diet - only a relatively few develop anorexia.

Many teenagers get concussion from playing sports - a small percentage will not recover, instead they develop anorexia,but most kids with concussion don't develop anorexia. 

So the "trigger" can be, it appears, something that just unleashes the anorexia condition, which was basically potentially going to be triggered by "something".  

This is why I don't think it is really productive or helpful to necessarily even focus on what the triggers were for that particular individual, because the "trigger" isn't actually the "cause" of the illness.    It's natural to want to try to explain "what started my child's illness" but realistically other than a total ban on dieting, we don't know how "preventable" anorexia is, do we?   

And in relation to "premorbid" conditions.  Nobody has convinced me that depression, anxiety, and quite distorted thinking are separate from the condition of "anorexia".  The illness has wide effects and the starvation part of it is just one effect, but the "experts" haven't come up with a great way of describing or classifying how it starts.   The clinical focus seems to be on the starvation part of it rather than the entire illness.    

There is so much we don't know enough about - but thanks to people sharing their experiences of what works and what doesn't work, and describing the progression of the illness and recovery, parents and caregivers at least are able to make better decisions, have more options,  and know what is likely waiting around the corner.  

best regards
Seabird 
    


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Mother of 20 y.o. male diagnosed at age 16 with RAN, exercise compulsion, anxiety, depression & SH, FBT 4-5 mths to WR, WR now 3 yrs; suicide attempt 4-6 wks after WR,  IP 4 weeks.  Steady progressive recovery over past 3 years including support from psychologist on general wellbeing. Slow steady steps to success!! 

When your last bow is broken and your last arrow spent, then shoot, shoot with your whole heart
 [Zen saying}
mjkz

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Reply with quote  #13 
Quote:
My point in relation to triggers is that nobody knows why anorexia is triggered by events or traumas that can lead to a wide array of different effects in different people.

Many teenagers diet - only a relatively few develop anorexia.


True.  Those who have the genetic basis develop anorexia.  Those who do not have it are the lucky ones who do not develop anorexia.

Quote:
And in relation to "premorbid" conditions.  Nobody has convinced me that depression, anxiety, and quite distorted thinking are separate from the condition of "anorexia". 


For your child maybe and when I was referring to premorbid conditions, I was speaking to those that were very clearly evident before anorexia.  Perhaps your son was lucky in that he had no premorbids.  My daughter very clearly had both depression and anxiety for years prior to the the onset of her eating disorder.  I suffer from depression.  My father suffers from depression.  His father committed suicide.  Both sides of the family have depression and anxiety.  My daughter was already being treated for both when she developed anorexia and has said to me many times (as others here have commented) that weight loss and not eating helped her anxiety and depression much more than anything else she tried.

Quote:
I have been racking my brain for triggers as we go throught his process and just can't figure it out.....


For my daughter it was only with hindsight that we figured out what triggered her going down the rabbit hole.  For some I am sure there is no clear trigger and it may never be anything you can figure out.  I think the important part really is to treat where you are at now and worry about that later if at all.  Once my daughter was stabilized, we were able to see clear things that tend to trigger her to stop eating-red flags so to speak.  That was much later down the line.

Quote:
we don't know how "preventable" anorexia is, do we?  

Yes and no.  If you have one kid develop anorexia, chances are you are going to be extra vigilant with any other kids and catch them quickly if they start going down the rabbit hole.  In that sense, we may be able to prevent anorexia in other sibs.  Hopefully as more and more research is done in the genetic arena, we can start pinpointing more clearly the kids at risk and start trying to prevent it or catch those susceptible more quickly to better the odds of a full recovery.
IrishUp

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Reply with quote  #14 
@Seabird - I agree that there are many pathways towards an ED! The range of expression - from highly restrictive AN to BED, from those who manage for decades to be sub-clinical to those who are in cardiac ICUs within weeks of onset - alone argues that "Eating Disorders" might best be thought of as an umbrella term for an array of genetic and environmental susceptibilities which can give rise to the inability to eat in concert with nutritional need and personal desire.

That said, there is definitely ONE path that makes up maybe 60%+ of those with AN. They exhibit high baseline anxiety, perfectionism, social anxiety or avoidant traits before ED. The work that Dr. Kaye and others have done on fMRI, genetics & so forth have defo persuaded me that this is a real entity. AN is the least common ED, and when you include BED, about 5-8% of the population will have expressed ED over the course of their lifetime, predominantly somewhere between 13-30yrs. If AN is only about 20% of those with an ED, than this strong epidemiology cluster only accounts for say, 10-15% of everyone with an ED. IMO, this cluster is over-emphasized in the clinical literature, because they are over-represented among the patients who are most often visible to medical and psychiatric care. They stand out, and they have an easily recognizable, describable symptomatology and presentation.

Our anecdata: Among the 11 cousins our 2 are part of: 5 have diagnosed Anxiety or Social anxiety, and another is, I am convinced, undiagnosed (ours are 2 of the 5/6). Of these 5(6), all exhibited their traits as children; 3 have ED, 2 of those have AN (including our D).

I think it makes the most sense to think of the ED genes as being dimmer switches, rather than on-off switches. And probably there are not one or even a few switches, but a bunch. When we are born, each switch is at a preset level - it may be 0, it may go up to 11. The preset levels are different for everyone, but maybe having most of your presets at a 5 or 6, is very common in some families (like ours). The environment acts to turn these dimmers up or down. If your preset levels are already high, it's not going to take much in the environment to trigger ED. But they can also be low at baseline. Or off.

And how bright the room is lit, and where in the room is lit would be analogous to how we SEE the ED get expressed. What I THINK, is that our Diet Industrialized Complex and heavily stressful society, is turning up more dials, earlier, than we've seen at other points in history or in other cultures. The baseline number of people with that core trait - the people you CAN'T prevent ED for, is unchanged. 

We could probably do a better job of reducing risk for a LOT of other kids and YAs who may go on to ED. So, not ALL EDs are preventable, no. But there is definitely room for improving the exposures for our kids and people in recovery, so we could achieve important *harm avoidance*.

I know I certainly have approach weeIrish with that in mind. I've put in some miles educating him about EDs, yeah, but also working with him on his hunger cues, teaching him to be mindful about his mental state & correlation with nutritional state, adopted Ellyn Satters' approach, and am always attentive to how he handles his internal emotional life and needs. 




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IrishUp
atdt31_US

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Reply with quote  #15 
Quote:
Originally Posted by IrishUp


I know I certainly have approach weeIrish with that in mind. I've put in some miles educating him about EDs, yeah, but also working with him on his hunger cues, teaching him to be mindful about his mental state & correlation with nutritional state, adopted Ellyn Satters' approach, and am always attentive to how he handles his internal emotional life and needs. 



Irish -- I have been reading some Ellyn Satter stuff and have gotten a bit confused on where her DOR and FBT Magic Plate/LSUYE come into play on a child with ARFID (lack of natural ability to eat enough to gain to normal markers, as opposed to pickiness).  Satter seems to say thin is not unhealthy, and even a kid well below "normal" is fine if keeping on own set arcs and having good vertical growth.  I have not found anything of hers I think is in-depth enough to get me to rely on it, but it is certainly tempting to adopt her line of thought with a kid who has been on a steady vertical curve at about 50% despite a weight curve of 7-2% and a vmi of around 12 - 13 for her entire life.  I have just begun looking around at this so forgive me if I am missing obvious readings by Satter or others on this.  Since I could read Satter to say let my kid continue to eat as she chooses, and since this site and FBT would seem to say a bmi of 12-13 even with steady height growth is not okay, I did a search for Satter on this forum and this post by   you came up. 

I think "weeIrish" is your younger child, not the one with AN.  Is that right?  If not, if that is your AN child, can you elaborate on how you have used Statter's teachings? 

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Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
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Reply with quote  #16 
atdt I don't think Irishup is on the forum very often any more, but I can confirm that weeIrish is her younger child who has anxiety issues but not ED. 

I don't think Satter is saying it is OK to have a BMI of 12 - 13 without change over time at all, mainly because by definition,on the growth chart as kids get older BMI should be increasing along with height. Normal growth is associated with lowest BMI around age 5 then increasing to the adult level in early 20's. That means if BMI is not increasing they must be going down the centiles on the chart. 

I don't think anyone is saying that thin is always unhealthy but those who are very thin are more likely to be unhealthy just like those who are very fat are more likely to be unhealthy - they are more likely not to be at the correct weight for them. If you have low bone mass for example combined with a low weight, that is already a sign of probable chronic malnutrition. 90% of peak bone mass is achieved by age 18, so being low in adolescence is a serious long term chronic health risk. 

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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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