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Torie

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Reply with quote  #1 
This is so flipping stupid.  What's wrong with these "professionals"?

My d is at a large university so of course there are many ED sufferers there, and yet I'm really pretty sure there is NO professional in the area who understands the fundamental principles of evidence-based treatment for AN.  I found someone who does seem to use evidence-based treatment for anxiety, but somehow she seems to have missed the memo about helping head off relapse with AN.

My d has lost a little weight this first month.  Just a little.  She is still completely rational about food (e.g., "I hope there's dinner at home because I didn't have time to eat before I got on the bus"), and she's doing great in every other way.  

Please help me get her therapist on board with the need for proper, periodic weighing - I'm having trouble figuring out how to explain the obvious.

This is all I need.  It is all I have EVER needed from the "professionals," and yet.  What always happens is they side with my d (or ED) by making it harder for me to monitor her weight than it would be if these "professionals" didn't exist.

I belong to an email group of carers of depression sufferers - mostly bipolar.  ATDT is so much more upbeat because there is so much more HOPE here.  Many of our kids reach full and lasting recovery - everyone talks about how deadly AN is, but what also needs to be underscored is how TREATABLE it is.  Food is such great medicine - much more reliable than antidepressants or other meds for mental illness.

I know people are busy so I always try to limit my notes to professionals to one single page.  Please help me figure out what to say to this woman to help her understand that monitoring is essential during the tricky transition to university.

So ridiculous that she is no more rational about this than is my d.

Thanks. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Reply with quote  #2 
Hi Torie,
sometimes I think the name "professional" is possible to be won in a crossword-puzzle. I have no words for that you must tell them that regular weighing is necessary.
Maybe you can show her that:

Definitions of relapse

Different definitions of relapse were identified (see Table 2). Some definitions were dependent on weight or BMI measures including: BMI < 16.5 for 2 weeks [14], and BMI < 17.5 [7, 15] or <18.5 [31] for three consecutive months. Other definitions included 15% loss of average body weight after achieving normal body weight, either during the index hospitalization or any time during the 10-year follow-up period [29]. Strober et al. [4] similarly defined relapse as <85% ideal body weight, which could occur post-discharge or post-recovery. Furthermore, relapse could be partial if the individual had recurrence of psychological symptoms but sustained 85% of ideal weight, or full relapse if both psychological symptoms returned and body weight dropped to less than 85%. Several groups [1922, 24] defined relapse as Morgan-Russell criteria of “poor” (BMI ≤18.5).

from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5470198/

So she may understand that if weight loss is a common sign for relapse and your d is not carrying a led sign on her face what her actual weight is it is necessary that her weight is controlled regularly.
If she makes more problems, please link her email adress and I´m sure there will be hundreds of parents who will make her understand that weighing IS NECESSARY!
No words for that...

But see the positiv things: she has only lost a little bit in the whole first month! That is great! She can be very proud that she managed that all alone!
I hope my d will do that as great as yours when she hopefully is able to go to university sometimes.
Congratulations [thumb]!
Tina72

mjkz

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Reply with quote  #3 
Do you really need to spell this out to her?  If all you need is a period weight, then she should be able to do that or have her doctor do it.  I find if the professionals are this naive about something so basic, just tell them what you need and leave it at that.  If she can't do that, find someone else to do it.  Some people never get it.

If your kid was diabetic, would she be asking you if you really needed to keep a log of her blood sugars??! This one probably would!!
HateEDwithApassion

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Reply with quote  #4 
I wonder if you could write something like this:

Dr. Idiot,
Daughter has agreed to a contract with our family, due to previous history of anorexia, to be weighed at regular intervals. We set this up when she chose to attend university away from home. We have found, in the past, that monitoring of her weight is helpful to both her and to us in heading off the possibility of relapse through inadvertent weight loss. As a new college student that has irregular schedules and is adjusting to the newness of college life, we want to support her health the best we can, particularly in these early months.

Are you willing to weigh my daughter every DATE during her appointments to fulfill this agreement? If not, I will make arrangements with the health center or another provider as soon as possible. We need to begin this next week as a regularly scheduled part of her care.  I appreciate your support in helping her maintain her health as she transitions to college life. And for supporting the contract that we agreed to as a family.

Thanks,
Torie

That's what I would write. Then see what she says. If she won't do it, get another provider who will weigh and email you the number. Even the health center seems like it could accommodate something like that? And, I'm sorry for your worry. I can hear it in your post. Hang in there.


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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
Torie

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Reply with quote  #5 
Quote:
Originally Posted by mjkz
Do you really need to spell this out to her? 


There are two reasons I need to spell it out:

1.  On behalf of her future patients, and
2.  Because my d talks to her about it, and she sides with my d (e.g., "Since eating hasn't been an issue for three years now, I don't think we need to worry about it.") 

Thanks for all the replies.  Please keep them coming. xx

-Torie

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toothfairy

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Reply with quote  #6 
Is this any use

http://www.mirror-mirror.org/transitioning-to-college.htm

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
AUSSIEedfamily

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Reply with quote  #7 
There is a really great podcast on the New Plates podcast created by Laura the founder of F.E.A.S.T with Laura and Dr. Rebecka Peebles having a conversation about "State Not Weight"

Might be something this person listens to!!



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mjkz

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Reply with quote  #8 
Quote:
2.  Because my d talks to her about it, and she sides with my d (e.g., "Since eating hasn't been an issue for three years now, I don't think we need to worry about it.")


And if we didn't need to worry about it, it would be no big deal.

My question was more pointed towards why would you need to spell this out to her-tell her what you need and stop the conversation there.  You don't need to justify something that is so obvious to someone who is not going to get it.  If she refuses, then find someone else to do it like a doctor.  If she has to ask why would you do this in such an obvious case-I seriously doubt she is ever going to get it.
HateEDwithApassion

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Reply with quote  #9 
I am still shocked the supposed mental health professionals, who know the mortality and complexity of treating eating disorders, still challenge parents who have gotten kids back from the brink. Like you don't know your daughter and her vulnerabilities and this d%$ disease? You've lived it for years. How the heck does she know if your D needs to worry about it? She just met her for goodness sakes.

I do agree with mjkz - if she won't weigh her, someone else can. But, your concern is also that she is feeding into your daughter's belief that she doesn't need monitoring, and the ED, wherever it is buried, will love that idea if it catches wind of it.  That is so maddening. I'm so sorry. 



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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
toothfairy

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Reply with quote  #10 
This is well worth a listen...
http://tabithafarrar.com/2017/07/going-sane-exposing-malpractice-mental-health-industry/


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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
evamusby_UK

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Reply with quote  #11 
Hi Torie,

I like the simplicity of just asking the therapist to weigh, as mjkz have suggested.
I see you'd like to educate this therapist for the sake of other students. Great if you can do it - if she is ready to learn! Difficult because you're not in an 'educator' position, as 'just' the mum of one student.
I can see also that you want to educate her so she doesn't talk nonsense to your daughter. This is a bigger question - are you confident she's a good therapist for your daughter and won't do any harm? (See Sarah Ravin further down).

My D has just started university as well (locally, but living independently). For what it's worth, we agreed to try out this system for weight checks: she videos herself weighing herself and sends it to me via Whats-App. It relies quite a bit of trust, so it's only appropriate while her mindset seems sound. I can always spring a surprise check on her when she visits but we're trying out the video system to make visits not ED-focused. Again, only appropriate because of the good state she's in. I didn't push for her to be weighed by an outsider because she wants to get on with normal life, and if she's going to trick the scales, she'll do that more easily with a nurse than with me.

I think it is wise to check things in the early days of university. It does seem to be a high-risk time for relapse. 

In my opinion I would not send anyone those criteria for relapse that lovely Tina refers to (the BMI/weight loss figures) : we all know that relapse signs begin way before we see that kind of weight loss, and I am worried that the therapist would not. And that she'd sit calmly as long as the weight loss wasn't that big.

More resources from my collection of notes:
Dr Sarah Ravin: "Leaving the nest - 10 tips for parents"
http://www.blog.drsarahravin.com/depression/leaving-the-nest-10-tips-for-parents/
This doesn't exactly address your request but it does match with  your frustration about the service:
"Do not rely upon university services (student health center or student counseling center) to provide therapy, psychiatric, or medical services for your child."
"establish a treatment team off-campus."
"Some situations, in my opinion, warrant a medical leave and an immediate return to the safety of home. For example, a suicide attempt or gesture, an episode of alcohol poisoning, a weight loss of more than 5 pounds (in the case of anorexia nervosa) or a recurrence of binge/purge symptoms lasting longer than a couple of weeks (in the case of bulimia)."

She also did a great podcast with Tabitha Farrar: http://tabithafarrar.com/podcast/dr-sarah-ravin-eating-disorders-starting-college/
AND wrote for FEAST: , http://letsfeast.feast-ed.org/2014/06/guest-post-relapse-prevention.html 

Lauren Muhlheim: ‘Eating disorder college contracts’ in Mirror Mirror  http://www.mirror-mirror.org/college-contract.htm

Lauren Muhlheim: 'Is your young adult with an eating disorder ready for college?' https://www.eatingdisordertherapyla.com/is-your-young-adult-with-an-eating-disorder-ready-for-college/

This includes a link to a Sample College Transition Contract on http://c.ymcdn.com/sites/www.feast-ed.org/resource/collection/DA67E487-0CE9-493A-9669-AD3C7912FCD2/Sample%20College%20Transition%20Contract%20-%20View.pdf

Also Carrie Arnold’s account of her own thoughtful and honest relapse prevention plan http://edbites.com/tag/relapse-prevention/







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Eva Musby, mother, author, produces lots of resources for parents at http://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
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Torie

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Reply with quote  #12 
I love you guys.

I'm sure you're right, mjkz, that I can't reform this woman ...  but that doesn't give me a free pass to give up without trying.

I also agree with whoever said they wouldn't particularly trust someone like this to be able to weigh properly in the first place.  We all know that ED is SO much craftier than this "professional."  My own eyeballs - without a scale, even - are much more reliable.

Toothfairy, I love the mirrormirror page, but I don't think a "professional" would likely give credence to something from a website that doesn't look all official (oh the irony!).

Bev, this is PERFECT: "Some situations, in my opinion, warrant a medical leave and an immediate return to the safety of home. For example, a suicide attempt or gesture, an episode of alcohol poisoning, a weight loss of more than 5 pounds (in the case of anorexia nervosa)...." -Dr. Sarah Ravin

It fits so well with what I said to this "professional" during my 15 minutes with her.  I said that there seems to be a continuum for college students - at one end is an orphan who has no parental support.  At the other end is a student who has to leave college and go home for 100% full parental support.  I expect that my d will be somewhere toward the "orphan" end, but with enough support to ensure that she will never need to leave school and come home.

Maybe she hasn't thought about the fact that weight loss can be - must be - nipped in the bud.  I guess that is the other point I need to make - preferably with a quote from someone like Dr. Peebles.  What I would like best is for Dr. P to call this "professional" and tell her 1) It isn't safe for my d to lose weight and 2) Any weight loss needs to be reversed asap.  I wanted to hug her when she called D's previous t and directed her to cease and desist from all conversation about food, weight, eating, etc.

My suspicion is that these "professionals" (and I think this woman represents the rule and not the exception) don't see all that area on the continuum - just the two extremes.  The "good" end where the kid basically deals with everything like a normal college student, and the "bad" end where they are so ill they need to leave school.  I just want her to see that some need that that little bit of "extra" support during this challenging transition.  (Weirdly, I think they DO understand how challenging the transition is - they just don't want the parents to react to it.) 

I look forward to reviewing all the links you guys posted.  Thanks so much.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Torie

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Reply with quote  #13 
I KNOW others will be faced with this same challenge when your ED-kid goes off to university.  My d is at a very large university, and my non-ED d is at a fairly large uni.  I searched high and low for a competent therapist in both cities, but to no avail.  It is up to us, the parents.  But at a distance now. 

Maybe the great article ToothFairy posted on another thread will be of use:

https://uncexchanges.org/2014/12/01/negative-energy-balance-a-biological-trap-for-people-prone-to-anorexia-nervosa/

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
sandrine16

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Reply with quote  #14 
It's beyond words that they don't see the need for ongoing weight charting.  Have they ever heard of data points to confront the anosognosia and prevent relapse given the stealthy nature of the disease?  The following is a pamphlet, AED Report 2016, 3rd edition. I would think you could pull something out of here that will support your point.  Good luck!

"ONGOING MANAGEMENT Following initial stabilization, ongoing evidence-based treatment delivered by healthcare professionals with expertise in the care of patients with EDs is essential for full recovery. Optimal care includes a multidisciplinary team approach by ED specialists including medical, psychological, nutritional, and psychopharmacologic services. Families (i.e., parents, spouses, partners) should be included in ED treatment whenever possible. In low weight patients with ED, restoration of an appropriate, healthy weight will significantly improve their physical, psychological, social, and emotional functioning. Failure to fully restore weight correlates with poor outcomes and maintenance of a healthy weight strongly correlates with improved outcomes. For full recovery from an ED, however, weight restoration is not sufficient for full recovery. It is equally important that distorted body image and other ED thoughts/behaviors, psychological comorbidities and any social or functional impairments be addressed by qualified professionals during the treatment of patients with EDs."
mjkz

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Reply with quote  #15 

Quote:
I'm sure you're right, mjkz, that I can't reform this woman ...  but that doesn't give me a free pass to give up without trying.


You already tried from the sound of things which is why I said what I did.  At a certain point, I've learned the hard way you just need to do what is best for your own kid and stop beating your head against a brick wall.  Some people are just ill informed and are willing to listen but a lot aren't.  Sad really.
Torie

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Reply with quote  #16 
Mjkz, that gives me an idea.  I had been planning to write to the t and send a copy to my d.  But maybe it would be better to write to my d and send a copy to the t.  Yes, I'm pretty sure they would both be more receptive that way.  Thanks. xx

-Torie

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mjkz

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Reply with quote  #17 
Quote:
But maybe it would be better to write to my d and send a copy to the t.  Yes, I'm pretty sure they would both be more receptive that way.  Thanks. xx


That sounds like a much better plan to me.  One thing I learned the hard way-arguing with my daughter's therapist, a therapist she is going to be working with only makes that therapist more enticing especially when she is trying to break Mom's grip on newly found freedom.  Your daughter is just away from home and has her taste of true freedom and being on her own.  She has limits that most other kids don't have on them and when the therapist agrees with her that the limits aren't good or needed, that therapist grows in stature especially if mom is arguing about it with said therapist. 
atdt31_US

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Reply with quote  #18 
Did you see most recent kartini blog about relapse and return to school?
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Mom of either pre-diagnosis or non-ed underweight 11 yoa kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006.
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