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

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I am new to this so please bear with me...

Our daughter (15) was diagnosed with anorexia in early January.  She admitted to me on NYE 2015 that she had been battling binge eating for the past two years. We met with her doctor in early January 2016 with a plan as to how to help her binging but over the span of two weeks she lost 11 pounds.  She quickly went from a binging problem to anorexia.  Treatment began on January 19th in a Partial hospitalization program.  She was down-graded to IOP as of mid-February.  Discharged from the program as of March 17th. 

Somewhere in late January she told me she didn't think she was "that fat"...and began eating again and her recovery started at that point.  We are now three months into this journey and although physically she's doing relatively well and her weight is mostly stable she is starting to restrict again.  Mainly at school.  She eats lunch in the nurses office because of the fear associated with eating in the lunchroom.  Her teachers/peers don't know why she missed a full quarter of school - only her few close friends.  Her meal plan has three meals and three snacks per day.  When she was in IOP and alternating between program and school, at school she'd eat her snack during one of her classroom periods that she was being pulled out of (Health class - covering eating disorders and mental health).  When she finally returned to school full time at the end of March, she resumed her Health class.  Our plan was to incorporate morning snack with lunch.  Last night, I found a weeks worth of her snack stashed in her closet.  Consequently, I had reached out to the school nurse earlier this week to see if she's been eating all of her lunch. 

Does anyone have any experience with how to get support from the school in terms of lunches being monitored.  Legally, can this be done because of a medical diagnosis? 

The hard part (as we know there are many) in this is that there are many good days but when those bad days hit - they overshadow all the good and progress.  She told me last night that she thinks she wants to get better but doesn't know how to separate her old self from her eating disorder self.  I feel like she's fighting so much and pushing through even when it's hard and she doesn't want to eat - she does it anyway.  But, giving in to the ED only further gives control back to the ED.  I realize there is no magic answer with this.  Everyone situation is different.  It would just be nice to know that after some period of time, she's going to be better. 

This is a tiring, emotional journey and I am her primary source of strength and support.  She sees a therapist and like several posts I've read - she's not happy with the therapist.  I don't know if it's because the therapist is trying to delve into the issues and making her address them or if the therapist just isn't the right fit anymore.  She also sees a dietitian to stay on top of her meal plan as well as a psychiatrist to monitor anxiety medication (she developed horrible anxiety due to the AN). 

As the parent who is working to get her through this, I am just looking for a means of support.  Any guidance, advice or input would be greatly appreciated <3
It does get better with time, but it can take some time. Has your d been steadily gaining weight? Weight gain and constant nutrition for a long bit is what brings them back slowly. Everyone's time frame is different, but once my d was WR, we saw some improvement (by no means fully recovery, but heading in the right direction), then after several more months of regular eating, some more improvement. Of course, along the way a few steps backward too, but overall if she keeps eating and is at a good weight for a while, things do improve. Sometimes a co-morbid needs to be addressed as well.

I can't speak to your lunch issue, but I know many other parents have the school lunch experience and will give you an answer.

Skechers, thank you for your response.  What does WR mean?  See, still very new to this [smile]

D's weight has been stable since February although when she saw the dietitian last Friday she was down three pounds from previous visit mid-April.  I attribute this to her not eating her morning snack as well as restricting her afternoon snack as well.  Additionally, she is a dancer which means she is burning through her calories that she needs.  We limited dance throughout the early stages of this process and she has only recently started adding classes back in (and still not dancing nearly as many hours before this all began in January 2016).  She is also a competitive dancer and has finally been added back into all of her dances for her May competition.  This was a big deal to her because she's felt as though she's let the team down.  I have reinforced all along that her health comes first.  I am at a point where I will need to make decisions as to whether or not she continues dancing if her weight keeps declining.  Do people punish their children for not eating?  My husband wanted to know what her consequence was going to be for not eating her snack at school for the past week or so....how do punish her for this.  My thinking is that is the punishment really going to work or get her to do what she needs to do which is eat her snack? Any thoughts on that?

Thanks again - hoping this message forum will give me some insight into other's situations and how I can learn from those.
She has a disease. Do you punish a kid for having cancer? " punishment" is not a word in the vocabulary of fighting eating disorders.

I'm going to be very honest with you. Her not eating and hiding food along with a 3 pound weight loss is showing you that her Ed is very much alive and well. You are VERY early in the process. This takes many many many months and often years to beat.

Dancing at that level is just a catastrophe waiting to happen. If she cannot keep her weight up then no dance. Period. For a long time.

She needs monitoring. She needs you to eat with her at every meal and snack right now. She has an illness in her brain telling her she is fat and horrible and that she can't eat. She needs your help and support.

It takes a lloooonnnggg time. It takes a ton of support and energy to fight this.

It took my family 3 solid years to get to full recovery and that seems to be a common time frame for many.

Persistent, consistent vigilance!
Yes to all that Mama bear has said. It sucks and seems harsh but you have to throw everything at this dreadful disease now to give your d the best shot at recovery.

WR-means weight restored. I remember when we did first starting refeeding and the Maudsley therapist gave us a handout and weight restored according to that meant 90% of ideal body weight. Ideal body weight meant she was in the 50% percentile for height and weight for her age.

That being said, even though that's what the clinicians say is WR- I believe it is probably used on this forum more to mean that your child is at the proper weight for her to recover. That means 100% of whatever her height and weight percentile should be. So, if your d was always at 75% for height and weight historically, then that's where you aim for weight restoration. I'd look at her growth charts from prior doctor visits if you have them to chart her growth curve to determine her proper weight.

Also, eliminating exercise until she is eating and doing better is not a punishment, although she may see it as one. She needs to be healthy to dance and she is not healthy now if she is losing weight and still struggling to eat. She can dance when she is better. You'll find many parents tell the story that their child had no interest in dancing, swimming, running, etc.-whatever their prior alleged passion was. They tell their parents they felt compelled to do it because of ED.

Welcome! So sorry you are on this journey.

Mamabear is on point.

We are 2yrs since actual diagnosis/first hospitilisation, (ED was around before that of course) and we are in recovery, I wouldn't call it 'solid' just yet but it is getting better all the time, I still have to be vigilant every day and will do for years to come. I still watch each meal out of the corner of my eye. And am alerted to any unusual behaviours appearing.

There is a common phrase here and it is 'This is a marathon not a sprint'. It is very true with ED.
Son 9yrs when he became unwell 2013, ED slide from April 2014, dx at 10yrs July 2014, 2 hospitalisations - dx so many times Behavioural Anorexia, EDNOS, ARFID. FBT from August 2014. Anxiety, Emetophobia. 13.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
The first and most important step in your d's recovery is for you to learn everything you can about EDs (eating disorders).  

The first thing to understand is that EDs are biological brain disorders.  They are not a choice.  They are genetically based developmental brain disorders; you can't give yourself or anyone else ED.  If someone has the genetics for ED (and we have no way of knowing beforehand), and suffers a threshold level of malnutrition, ED goes ka-pow.  The malnutrition may come from actual dieting, or from illness, or from a change of diet like becoming vegetarian, or from over-activity such as sport or dance that is not compensated with enough calories.  IT'S NO ONE'S FAULT THAT ED HAPPENS.  You did not cause this.  Your d did not choose this.

There is a lot of bad information out there, so start with the FEAST website, especially the Family Guides.  They are quick and full of information.

The books recommended are good (I'm not a fan of Skills Based Learning, but...).  I'd add "Brave Girl Eating" by Harriet Brown and "Throwing Starfish Across the Sea" by Laura Collins and Charlotte Bevan.

Nutritional restoration and weight gain to HER appropriate weight are the first and most important steps in recovering from ED.  Getting her back on her genetically predetermined growth curve will give her a chance to fully recover.  Without that...not so much.

I'm concerned that your d's therapist (t) sounds what I would call "Old School"--that she is trying to resolve some underlying issues.  That is code for "out of date therapist."  Nutrition first.  Talk later.  There are not necessarily 'underlying issues' to be dealt with, other than the ED itself.  If the focus isn't on regulating nutrition--and a 15-year-old should not be in charge of this--then you might want to consider a different therapist.

And one more thought:  try not to think of your d being at all in control of eating.  She isn't.  Her ED is in control.  So it's not that she WON'T eat her snack; she CAN'T.  She is compelled by her disorder to avoid food at all costs.  It's really unfair and unproductive to punish her for something like that.  Instead, try to look at it as this:  she has shown you that snack is a problem for her.  She can't eat it.  We call this "feedback not failure."  How can you resolve the problem?  Can you find support at her school for eating support?  Our school nurse was awesome and ate lunch privately with my d every day.  But not all schools are so amenable, and not all adults understand the absolute kind of supervision a kid with ED needs.  If you can find support there, great, give it a try.  If you can't, maybe she needs to be out of school for a while till she's better.

The learning curve is steep!  But you have found a great place of information, sharing and support.  No one does more research than a parent with a sick kid!  I found the resources and support here ATDT (Around the Dinner Table) made the difference between life and death for my d.  She was gravely ill by the time we figured out what was going on.  Despite having an experienced team, they were behind the times in evidence-based treatment.  The information I found here from other parents was the key.  My d was sick at 16/17 and is now a healthy, happy 25-year-old.  Recovery is possible!  There is great hope!
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
You have already received lots of great advice. I will just add a couple of things.

If your d was dealing with bingeing for 2 years before talking to you, her ED is probably well entrenched.  You will have to throw everything at it to beat it. 

We too dealt with "old school" treatment for awhile. It can be incredibly detrimental.  My d was older at the time (17-18) and the therapist tried to cut us out of my d's treatment.  Her intentions may have been good (that she thought my d needed to do this on her own), but were misguided since ED's don't work that way.

I had to become the expert (with the help of this forum and the amazing parents on it) and then go out and find evidence based care for my d.  

As others have said weight restoration only seems to work when they are restored to THEIR historic weight range. This will be hard to determine for your d. If she was bingeing for at least two years (it usually has gone on longer than they admit to us) that takes her back to 13 and she still had a lot of growing to do.  For us, my d always tracked in the 75th percentile for weight.  We only saw real recovery when she got back to (in fact above for awhile) that 75th percentile. As Colleen says, the learning curve is steep for parents.  It is totally counter-intuitive to think that making your d gain MORE weight will actually ease her ED symptoms, but that is exactly how it works.

The next part I have to say may be hard to hear.  My d was also a competitive dancer.  In fact, it was her selection to a pre-professional dance troupe that resulted in her doubling the number of hours a week she was dancing (combined with wanting to lose 5 lbs from when she had been injured and not able to dance) that set off her ED during the summer between her soph and junior years in HS.  We did have to stop all dance for awhile until she was close to weight restoration. She tried several times to go back to dance, but it just never worked for her. In the end, she had to give it up because she felt it was not conducive to her recovery. This was despite the fact that her loving artistic director promoted athletic body types because she herself had anorexia as a teen-ager.  It was a crushing blow for my d on top of everything else she lost to ED.  However, we are a few years down the road and my d has built an amazing new (and ED free) life for herself. 

It is all VERY unfair.  I tried to let my d keep one foot in life while the other foot was trying to recover.  It never worked for us.  It was almost like she had to stop her life to recover fully and then rebuild her life.  Others on the forum have been able to manage life and recovering at the same time, but we could not. My d missed most of her junior and senior years in HS because of her ED.  I used to not be able to sleep at night worrying if she would ever be able to go to college.  In the end though I realized that college or anything else in her future would mean nothing if the ED was still present. The other thing to consider is that leverage that you have over your d now will only lessen over time.  Helping a young adult recover from ED is even more challenging, especially when they have their own money, can run away to friend's houses, have college scholarship money to go to college even when they're not well etc. 

Enjoying my 23 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!