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.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

papyrusUSA
My daughter has just returned home from two unsuccessful semesters at college.  She will not be returning to college for now.  She admits that she needs help.  We have been on this journey since May, 2011.  Through all this we have had the support of an highly respected ED doctor, a 6 month ACT research protocol, and a 1 week intensive program.  Through all this, my daughter has hung in limbo, always teetering on relapse.  She has rarely experienced a period of time without ED thoughts.

I have mentioned to each professional that I believe her target weight range is at least 5 lbs too low.  No one has supported me and told me or my daughter that it was time to move her into a better range.  It's possible that my d. has "scared" them with her explosive personality and bluster...but I thought they'd figured out what I know - under the expressive anger is a very compliant child.  Maybe they are worried about burdening me as I struggle with my own health, but adding a d. in the grip of ED only makes my own recovery more difficult.  I'd rather tangle with the monster than watch it grow.

I don't know where we will go from here, but I'm not giving up...will continue to try to find support for what I know is right.  I feel like the professionals are settling for a low grade, chronic state of ED.  How do I get rid of all this triangulation.  It's hard to struggle with that, too.


Papyrus, Philadelphia area
Quote
GiveMeStrength_US
Papyrus, can you inundate them with research and tools found on this site to determine ideal body weight?  Does she have growth charts that they have analyzed?  What can you arm yourself with in terms of information or have you tried all of that?  When you say your Dr is an ED specialist, why won't he/she up the weight range a bit - a cushion, so to speak, shouldn't be harmful or put your D over the top in terms of her weight (although it may push her emotionally).  Have you spoken to them about how sometimes the weight has to be even higher at first with an ED-recoverer to really get those neurons firing properly?  I'm not sure about where that comes in, but I have seen plenty of people post about their experiences (cathy for one) with having to push their children's weight higher.
Mom to D 21 in November, behaviors started at 15, hospitalized at 16, IP at 17, FBT at almost 18. Finished second year in college; now abroad in treatment program to deal with co-morbids.
Quote
papyrusUSA
Lili,

Our professionals have practically "written the book" on Family-Based type Treatment.  Is it possible that over the years, as distressed parents, we weren't hearing the message at meetings, and that a higher range was recommended.  If so, it needed te be more explicit for me to hear it.  They are also very familiar with her growth chart.  Thank you so much for your suggestions.  At this point I'm moving forward and working to get everyone on the same page.
Papyrus, Philadelphia area
Quote
gobsmacked_US
So sorry, Papyrus. It breaks my heart when the people who are able to make big decisions about my daughter don't seem to really know her or trust me.

I am glad you are being steadfast.

For us, it helped when I reframed the question to "what are you worried might happen if we push to a higher weight?" I got my husband to support me (not so easy in itself), and he and I went to them with that question, told them we wanted to try another 5-10 pounds, and how could they support us?

Around that time we started meeting more often just my husband and I alone with our professionals and leaving our d out of it. That was very helpful, as d wasn't responding well to therapy, and we didn't have to worry about her reaction at these meetings.
Quote
BattyMatty_UK
Oh I really feel for you - that was our #1 issue too and it has left our son hovering at a sub optimal level. Now he is discharged I just can't move him away from the belief that it is OK to "find a weight he feels comfortable with". My advice would be to push for what your gut instinct tells you while you still have treatment because I have no idea how to move things to their proper conclusion ie. full recovery once you and your child are in your own...
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
Quote
papyrusUSA
I just wish all the professionals would read on this forum daily - they would be educated about what works for us and our children and get us all on the same page.  in the meantime, I am trembling in my boots about upping her range- the rage, the rage...I hope I have the strength, but I will do what is necessary.
Papyrus, Philadelphia area
Quote
IdgieThreadgood7USA
I'm with you papyrus. I think even in the best of circumstances and professional relationships, there are just some things that a parents 24/7 x a child's lifetime that they cannot get. The hardest part for us is balancing accepting our limits without giving up on our insights and beliefs. I try to keep an open mind too because I know I'm vulnerable. Keep talking, stay calm and clear in your beliefs. I care very much for you my friend. I believe your family is in the best road to follow. Keep blazing!
"Sometimes you just have to be your own hero"
Quote
JangledUSA
Papyrus - could you get everyone on your team in a room together without your daughter and read them the post you composed that started this thread?

I cannot imagine that every one of them would say that you are wrong, that they know better, and that you should listen to them and go home and deal with it.    

It boggles my mind that you've put your foot down and you are being ignored.

A 5 lb increase is not much at all.    There is no way they could claim that gaining 5 lbs would hurt her so I would imagine they would go along.

FWIW, UCSD set our target weight 5 lbs higher than the treatment center my daughter was in so we were happy.    BUT, it was still 5 lbs too low.

I guess what I'm saying is that it might be a good idea to tell every single one of them, "Look dammit.  I know my kid and she's going to gain 5 more lbs....."
A dad.
Quote
papyrusUSA
Gobsmacked, our ACT sessions were separated.  Therapist met with my husband and me for 45 minutes and than d. for 45 minutes.  I found this to be fantastic.  I can't imagine sitting around a room with d., describing things honestly and having to respond to her anger.  Therapist was able to give us guidance and give daughter encouragement - we always left our sessions in a better place than we entered with a plan for moving forward - no frustration and everyone expressed themselves without having to censor our thoughts.
Papyrus, Philadelphia area
Quote
papyrusUSA
cont. to Gobsmacked.  But we are done with ACT.  I think you give me a good suggestions.  My husband and I should meet with our ED doctor alone - I have communicated all my concerns to her and we are in agreement.  She always wanted my d. at a higher weight, but something got lost in it's translation to me.  Now, I have to get my husband on board.

I am so used to having open communication about my d's treatment with our professionals.  We are scheduled to meet with DBT on Jan. 2.  My daughter is 19.  Does anyone know how that will work - am I going to be left out of the loop?
Papyrus, Philadelphia area
Quote
IrishUp
Jedi hugs, papyrus.

Have you tried to put it in reverse to them? As in "Team, this is getting exhausting for me to do at home. We've tried your plan, and it isn't progressing, and it is taking a toll on all of us. We need relief. I think d needs 5 more pounds, and I need your help. I need you to back me on this , at least on a trial basis."

xoxo
IrishUp
Quote
papyrusUSA
Irish, Right now our team is just our adolescent pediatrician/ED dr.  She is completely in agreement, so we will move forward.  Thanks for the support.
Papyrus, Philadelphia area
Quote
BattyMatty_UK
I can never get my head around why the professionals don't listen to us, the parents who have seen our child grow up from birth. How can they know when they've only known our children for a few months? We instinctively know what our children should (but don't) look like, we just do... Yet they don't listen to us!!!! It's crazy! Even when I took along a massive photo montage of pre-ED photos it still didn't work. The general feeling was that if my S didn't "feel comfortable" being a certain weight, then we should listen to him and allow him to stick there.
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
Quote
papyrusUSA
Yes Matty,  I have stared at the pictures of my d. when she looked soft and healthy, rather than lean and mean.  I have to admit, that she has been a disordered eater from birth, so adolescent weight has been up and down for many years, even before ED struck in earnest, but my daughter is generally petite, and I'm only talking 5 lbs. here.  I know from experience that if she were 3 lbs up she would be released from ED thoughts.  At her current weight, each bite is a challenge.  She tries her best, but why should she struggle?
Papyrus, Philadelphia area
Quote
BattyMatty_UK
Exactly, Papyrus. I totally agree with you. My son was quite chubby as a small child but slimmed down in adolescence as he took up sport and generally grew up. He'd reached his "peak" when the ED struck - and this "peak" is what is so obviously his set weight. And I can never get my head around why he doesn't want to be that physique again - why he prefers to be Mr Puniverse rather than the awesome strapping young man he used to be. Crazy!
Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
Quote
IdgieThreadgood7USA
Papyrus, I think as long as your d agrees that you and h need to meet with team separately at times to help you better cope o don't think it should be an issue. It's not confidentiality it's team needs. My biggest problem wasn't my d it was professionals confusing confidentiality with individual needs of the family and strengthen the team approach without triggering Ed thoughts.
"Sometimes you just have to be your own hero"
Quote
YahtzeeUSA
Papyrus  - we've only been in the trenches for 7 months and I could have written your post.  Husband and I just had meetings alone with our RD and T about upping D's weight this December and no one is on board with me.  The ED med doc/pediatrician also disagreed with weight increase at our November appt.

I hate to hijack your post but this is what we were told.  D (15)  is 2 lbs. above her highest weight pre-ed (which has all occured this past year that we are aware).  She is back on her growth chart with normal growth.

D is 5'5 and 118.  Her weight target from ED doc at her height was 105lbs.  (low end) to 125 (high end) so everyone is pleased at 118.  The 118 has been mostly stable since September at 3,000 - 3500 cal. a day.  (Pre-ed she was 116 in December of 2011.)  RD advised me if I want to put weight on, we have to increase calories and then maintain that amount for a certain amount of time - no time line as everyone is different. ( Med Doc and RD are fairly certain that height growth is complete because she had period at 11 years old and resumed menses at 106 lbs.)

Then the RD told me that she strongly feels that to try and stabilize  D  at a higher weight, her calorie needs will need to stay at that amount of an uncertain amount of time and that when we try to maintain with less calories, she will probably stabilize back at 118 again. 

I am watching this thread for sure!!!
Quote
Casper_USA
Count me in on this one, too. 

We have been at the premier ED treatment programs in the US and I have presented my son's growth charts again and again, to no avail.  As I have said in previous posts, it seems that for a boy, the professionals rely on a height estimate based on parental height and mental state to determine target weight.  My kid has always been around the 90th percentile for height and weight.  We don't know if he would have slowed down through puberty, but the pros are happy with 75th percentile and my husband is right there with them.  I've asked what is the harm of another five pounds -- that his pants won't fall off -- that he'll grow?  The response is always that he is making progress where he's at.   That is true; he is growing and tackling fear foods here and there, but why prolong the torment -- for all of us?? I just don't get it.
Quote
trusttheprocessUSA
Batty et al
My son was very comfortable at his lowest weight -96lbs.
It amazes me that professionals believe they can
Negotiate and compromise with an individual in the
Grips of ED. I'm assuming anyone not fully weight
Restored and healed to be in the grips of ED.
Even today - 6 inches taller and 68lbs more we only
Talk about how he feels and how his soccer is
Going. When his weight was restored his behavior improved.
And as long as he eats and grows he gets better and better.

Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
Quote
YahtzeeUSA

P.S.  I want to add that I did not print anything off for my RD or my T but I did mention some of the findings on this forum and/or books that I've read.

Our RD is also an ED RD.  In addition to what RD said above about the calorie amount going too high to sustain for our D, she told us that she has other ED patients whom she sees in her practice who are now overweight and/or obese and have gotten no psychological relief.  I asked specifically about teenagers with AN and she told Husband and I that she has not seen any benefit in any of her patients YET from added weight. 

This is the only area of contention I've had with her.  I would be on her side if I have not read on here that others have seen a difference in their children!!!!



Quote
ruralmomUSA
Been there, done that.  Have been exactly where you are now Papyrus.  Went to a nationally known center where our d's target range was set way too low (we now realize it was about 15 pounds too low), despite providing her growth charts.  We spent 4 years riding a virtual roller coaster.  Finally during a big crisis last year, I sent her growth charts to another center for them to estimate where she needed to be.  I then presented their advice to our current therapist and physician (both are young and pretty open).  The took the bull by the horns and I can tell you it has made the world of difference.  Can you get a third party to give you another opinion?   
Quote
papyrusUSA
Everyone, our doctor is and always was on board with a higher weight range.  Somehow, no one carved it in stone, so the change wasn't made.  We will make it now.  I dread my d.'s reaction.  We have to wait a few weeks to let her "contract" play out.  We will see weight loss if this restriction continues, then we can explain that new range is needed for both mental and physical health.
Papyrus, Philadelphia area
Quote
LauraCollins_US
The difference was about 7 pounds and the effect was DRAMATIC. After we saw that we STILL had to fight hard to keep professionals on board with it -- we were not believed. I find that FBT specialists are not necessarily better about this, either.

I believe because patients will all have a personally healthy zone that falls along a "curve" that at least 1/4 of patients are being brought to levels that simply are not enough for them because they need above the average or need to go above average for a while after malnourishment. I truly believe we are inadvertently holding patients (by saying "you're done") at sub-optimal ranges which sets them up for the most agonizing symptoms, for binging, for relapse, for inability to engage psychologically with recovery.

I believe the parents in this community know something that the professional world hasn't caught up with. It breaks my heart, really. I believe many patients are being failed for lack of this knowledge. I can't give parents advice on how to support their beliefs on this, or how to change the "system" on it -- I've been beating this drum for years now and can't even get my strongest allies in the professional world to establish a common standard or to speak up about this issue.
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
Quote
IdgieThreadgood7USA
Maybe it's us they need to do more research on. We are in general a much more reliable reportable source of data. Maybe we can get this started with stronger professional researchers and providers like Walt Kaye, Janet treasure and those wonderful providers who do recognize the most effective first line treatments.
Just a thought. This forum is a researchers treasure trove and whole it can't serve the scientifically in this form, it can serve to recruit and study the caregivers perspectives and experience that could lead to true scientific data supporting thing phenomenon.
"Sometimes you just have to be your own hero"
Quote
Christopher
Here's a paper to share with the professionals: Schneider, "Psychopathology in Underweight and Weight-Recovered Females With
Anorexia Nervosa," Eat Weight Disord 2009 Dec; 14(4):e205-11  Conclusion: "Prolonged malnutrition, as indicated by suppressed plasma leptin levels,
is strongly related to eating disorder-specific as well as general psychopathological symptoms. Weight recovery is associated with the absence of psychopathology. These data emphasize the interaction between somatic and psychological variables." http://www.ncbi.nlm.nih.gov/pubmed/20179407 

I would ask the treating professional if he or she is familiar with this paper and, if not, why not? I would also ask her or him to send me a list of all eating  disorder-related research journals to which the professional subscribes, and an indication whether the professional actually reads them or not. This would help me to evaluate the professional's level of competence.

I would also ask the professional whether he or she has ever consulted with a large goup of parents, such as those on this
forum, who have actually watched their kids recover from anorexia nervosa from start to finish, over the course of several months, and who
have seen for themselves the direct relationship between malnutrition, low weight, and psycholgical distress, on the one hand, and the positive psychological effects, over time, of refeeding and weight restoration, on the other hand.   I think the experience of most parents I know is
consistent with the research paper, above. I'm convinced the professional community is generally lagging behind on this issue, and failing to appreciate the adverse psychological consequences of chronic underweight in AN patients, even by a few pounds. As we know from the Minnesota Starvation Study, some people experience symptoms of depression and anxiety when they lose as little as 5% of their healthy weight.
Quote

        

WTadmin