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.

Need to talk with another parent? F.E.A.S.T. parents offer peer support via:

tp7
Hello, 
I have not posted in several months.  D14 was diagnosed with AN about a year ago and went into IP for four weeks. Although we had initially been hopeful that she would gradually get better after being WR, unfortunately it hasn't turned out to be the case for us, even after being 10% higher on her BMI curve. She has been completely resistant to taking medication and completely resistant to getting better.  She was also recently diagnosed with body dysmorphic disorder and generalized anxiety disorder, so those are probably also playing into her behavior. 

Over the last year she has become resistant to the degree that we started wondering if she had developed something like Oppositional Defiance Disorder along with everything else.   

Now that she has seen enough treatment providers, she has realized that when she refuses to do something such as having her vitals taken, no one physically forces her to comply.  After months of getting nowhere with a combination of outpatient treatment and PHP for a few months, we tried to check her into a residential treatment facility. Although she did go, she refused to stay. To our complete surprise, the provider stated that if she refused then they wouldn't take her because the facility was entirely voluntary.  And that's when it clicked for her that all she had to do was refuse to do anything, and no medical provider would physically force her.  

We thought that despite all of our challenges, at least she was diligently eating her 3 meals and 3 snacks a day.  Well, in early December I suddenly realized that she had been hiding food and not eating it.  She would wait until someone looked away for just a split second and then she would drop the food in between her legs where she had placed a paper towel to catch it.  We then also realized that she was exercising in secret in the bathroom.  

Of course the first thing we did was insist on taking her to the doctor, and that's when our big crisis started.  She refused to go, and said that she would never go back.  We then tried to weigh her at home by having my husband hug her and place her on the scale with him (and then we would subtract his weight).  Well, she thrashed around so hard that she hit her head hard against the wall and almost knocked herself out.  That's how committed she is to us not finding out her weight.  She then refused to eat for three days.   

And it seems that she has actually managed to find the one loophole in the entire system.  If no one knows her weight, then no one can admit her.  And she has been correct so far - not one single residential facility in the U.S. has been willing to take her without knowing her weight. 

We took her to the Emergency Room and they REFUSED TO WEIGH HER.  They sent us back home!!!  Apparently because of "patient rights".😡😡😡😡 Well after that, she thought she was invincible.  We came back home and she threw her plate of cereal against the wall three times back to back as I kept replacing it.  She spent three days in front of the table refusing to eat, while I called professional after professional begging for help. Well, not one single provider agreed to help.  They all said that from my description of the situation, they didn't find my D compliant enough for their center.  

I've literally been told that I need to wait until she "passes out" from starvation and becomes medically unstable so someone helps.  In the meantime, the ED has again become a gigantic force to be reckoned with.  ED constantly blackmails with "If you don't do what I want, then I will not eat".  And she will indeed refuse.  We have tried rewards if she eats, but they haven't been very effective.  Her ED eating habits have become overwhelming.  She will squeeze the food so hard that it will crumble, and then she will eat the crumbs one by one.  I literally spend 2-3 hours per snack.  She will obsessively wipe her hands on a napkin as well, and any attempt to take it from her will result in her refusing to eat altogether.  She will also constantly try to hide food everywhere.  When she eats, I have to check her completely after meals because she will hide food given even the smallest chance.  She will purposely turn everything into crumbs so it's easier to hide and toss under the table.  She can easily suck on the corner of a cracker for 2 hours straight without any progress.  If we try to give her a supplement she will not touch it.  She can literally spend days at the table and she will not touch it (we've tried).  So the only way to keep her from starving to death is to go along with her absolutely crazy eating habits.  Given that we feel completely abandoned by all medical professionals, we don't know what other choice we have.


And even the food that she supposedly eats, I'm not even completely sure that it's actually going in. I should probably mention that she studied magic for years as a hobby, and focused especially on making things disappear suddenly.  So she's very quick with her hands.  For the life of me I cannot figure out what she does with the food because I'm right in front of her staring at her, but she will hold it in a really weird way as if to cover it. Then she will take minuscule bites of less than a crumb, and suddenly a large piece is gone.  I've checked her pockets, her sleeves, the floor, and still I haven't been able to find the piece of food.  Of course she'll insist that she ate it. I once figured out one of her hiding spots.  She was holding a bunch of food in her lower jaw and then spitting it out later, so now we check every area of her mouth as well.


But the entire family is at breaking point. My husband, me, and my 10 year old son have all had nervous breakdowns.   The ED has hijacked every last thing that gave us joy.  Do we just let her starve until she becomes medically unstable?  And the scariest part is that I don't even know where her weight stands because we have physically not been able to weigh her by force and no medical professional is willing to help.  From what little I can tell from her super loose clothing, I can see that her frame has shrunk so much again.  😢We have taken all the privileges away that we can, and still she will not go see a doctor.  She claims that us taking things away only makes her more resolute to not go to the doctor.

I'm feeling helpless...and so, so heartbroken. Am I destined to watch my little girl just starve to death despite our best efforts?  
Quote
ValentinaGermania
I would suggest to take her to the one week family programm at UCSD or UCSF or in Ohio. Is that possible?
She definitivly needs a higher level of care and you a new start.
This cannot continue this way. Time is playing against you.
Keep feeding. There is light at the end of the tunnel.
Quote
Foodsupport_AUS
I am sorry to hear that things have got worse rather than better. 

There is no doubt that once ED finds a loop hole it will exploit it repeatedly until it can be closed off. It sounds like you have all reached the end of your tether, and ED is playing all the shots right now. Your D is of course at a difficult age, even if she wasn't ill with trying to become more independent being a key part of being a teenager. 

It sounds like you have tried very hard to get her into further treatment and so far you have been thwarted by the requirement to volunteer for care. It certainly was a big factor for us too. It sounds like the best way forward is to work on getting her to "agree" to care.

I don't think there is one right answer to this but a few thoughts. For many parents that involves using what leverage you have - access to cash, new clothes, phones, activities, outings etc.. Can you get those to be rewards for compliant behaviour?
What would happen if you just set ground rules for behaviour at home but did the reverse of what she expects - decreasing supervision? That is she is old enough to follow the rules and you shouldn't need to directly supervise. If this is all oppositional behaviour she will lose the opposition. There could be an expectation of a regular check up visit. 

Have you discussed or arranged for her to see a psychologist given the degree of manipulation she is showing? How are her teachers and friends finding her behaviour?

Could you move more of her foods to liquids? They are much harder to hide. More solid food that does not crush, or would tend to smear will make it harder to hide. 

Tina has already mentioned the family week at UCSD and UCSF. I am not sure if they would be close to you. The other program is designed for those 16 and up. Those programs again would likely require a certificate of medical stability and there has been a few families who struggled to get their child there. 

I am not sure what would constitute the need for compulsory treatment in your state? It would not surprise me that she would need to be medically unstable for this to occur. Have you sought any legal advice? Separate advice from her paediatrician ?
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
Quote
ValentinaGermania
tp7 wrote:

 I've checked her pockets, her sleeves, the floor, and still I haven't been able to find the piece of food.


Here recently a kid was hiding in his socks and another one in his hair!
It is very hard to find that out...
Keep feeding. There is light at the end of the tunnel.
Quote
tp7
I have called UCSD and begged them to take her, but apparently the program also requires a minimum level of compliance (which they say it doesn't sound like she has) and they will not discuss taking her without knowing her weight....every single other program that I've called has told me the same thing.  

My D has decided that she will not be receiving any medical care anymore, and she is so afraid of us finding out her weight that she is refusing to even go to the dentist in case it's an ambush. The irony is that a year ago I was having to hide all the scales because she was obsessed about finding out her weight. 

 I set up several appointments with a therapist, but she is refusing to go to all of them.  We have tried leverage in terms of taking away phone and we're not buying her a single item of any kind. 

We've taken most things away, although we haven't taken everything away completely because if we do she says that she will refuse to eat altogether and if she does it doesn't look like anyone will be rushing to help us.  

But this feels completely unsustainable.....I feel like I've fallen into a giant black hole.  Do we just put our foot down and let her not eat?  Eventually I suppose that she would become medically unstable and meet the requirements for the hospital.  But given that she had liver damage from a year ago and an extremely low heart rate, how many rounds of getting to that point can her body take?  Or will she then begin to eat just enough so that no one helps us but  certainly not enough to stay healthy?  

I feel like we're the only parents with this level of oppositional behavior, every professional tells us that they've never heard of a situation like ours.  :-( . 
Quote
ValentinaGermania
I think you can have at least a club with CED123 and some others here. It is really frustrating.

"We've taken most things away, although we haven't taken everything away completely"

How do you manage that at the moment? Can you take away phone or internet access until she has finished her meal to make her eat?

What is she doing the whole day?

Can you call the police or another adult (family) to take her to doctors appointments if needed? In some regions the police station has special trained mental health officers.
This is really serious if she gets through with refusing this. Medical supervision is not negotiable.

Is there anyone that she loves from your family? An aunt or grandma or somebody else she could eat with? Some eat better with witnesses.
Is there any chance to pay a professional ED nurse to come around?
I am just brainstorming ideas...

It is a really tough situation when they feel unstoppable because noone helps you to stop them...

"ED constantly blackmails with "If you don't do what I want, then I will not eat"."

How is her medical state? Could you give it a try and refuse to engage in that game? Show her you are not negotiating with that?
Keep feeding. There is light at the end of the tunnel.
Quote
tp7
Tina, thanks for directing me to other members, I will reach out to see what they have done.  We have taken the phone and internet access away until she eats, but she's spending 2-3 hours per meal.  So the entire day revolves around sitting there watching her eat and my 10 year old son is greatly suffering because of that.  He is getting no attention from us.  Not to mention the insults that are thrown our way in the process from my D....

During the week she goes to a special school that we found for her, where they (in theory) are able to keep a close eye on her eating one snack and one meal per day.  The school is tiny so it doesn't trigger her social anxiety.  I don't think that she's learning much right now, but it keeps her busy and I'm grateful for that.  One positive aspect of this is that it gives us a break for a few hours on weekdays to be able to work.  She seems to take less time to eat there. Although I am guessing that she's likely hiding some food and they're not catching it, which is why she doesn't give them as much trouble.  However she gets home by 3pm/15:00hrs and I pretty much spend the entire rest of each day until 10pm/22:00hrs watching her eat because she takes so long that one meal goes into the next.  On the weekends she refuses to leave the house and our entire day pretty much will be spent watching her eat one tiny crumb at a time.
Quote
Foodsupport_AUS
Have you been to see the therapist yourself? If your D is refusing to go, that does not stop you talking to the therapist. Could you set up a Skype session with them at home? Your D then has a choice of hearing you talking to the therapist without contributing or she could be involved too? 

As for do you let her not eat? It sounds like what ever is happening now is not working well for anyone. Options could include offering only time limited meals, knowing that it will result in less intake but it may also make life at home markedly more bearable for all. It may also break the stalemate of what is happening at home. If she completes a meal in time she can have access to her phone and do her activities as she wishes. If not quiet activities only until the next meal? 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
Quote
Torie
Glad to hear you were able to find a school that seems to work for your d.  Does she like going there?  If so, do you require her to finish her breakfast before going to school?

I think I remember that she is unable to face her old friends - any signs that she may be able to socialize after school with any of these new kids? xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
ValentinaGermania
"We have taken the phone and internet access away until she eats, but she's spending 2-3 hours per meal."

You could try to set a time limit for meals (maybe 45 min) and snacks (maybe 20 min) and require a substitute (ensure or other) if not finished in this time IN ADDITION to the meal/snack that is eaten that far. My d hated that because it would mean MORE calories and so she avoided to need to drink that.
Keep feeding. There is light at the end of the tunnel.
Quote
tp7

Thank you all for your replies and your support!!

I am typing this from the Emergency Room.


I did finally figure out where my D was hiding the food - under the table on top of the base holding the table up. The base was large enough to hide a ton of food and sure enough, there were entire meals in there. I finally caught her trying to hide her snack there while pretending to eat it. 


After I found it, I reacted very calmly and asked her to eat the snack. She said that since I had figured out her latest hiding spot she would not eat anymore no matter what anyone did. I couldn’t convince her to eat, no matter how calmly I spoke to her.

So we took her to the Emergency Room. She only agreed to go because we told her that we would call an ambulance otherwise. She has refused to eat anything while here. 
However we finally got some traction with the hospital and they’re keeping her overnight, which is a huge relief.

camusicmom, may I ask where you found a psychiatric hospital that has EDO capabilities? I have called so many psychiatric hospitals that have told me that they don’t handle EDs that I had assumed psychiatric hospitals with ED capabilities didn’t even exist. 

Tina, I love your idea about the supplement in addition to the food - the problem is that right now my D is refusing everything.  We’ve taken everything away and still she wouldn’t eat. Over the last couple of weeks she has appeared to comply more, but it was because she was really hiding most of the food. 

Torie, we did find a school for D but it’s a special school for children with autism and ADHD. It was the only place that provided enough oversight. So most of the children there struggle enough to get through their own day that they don’t really challenge my D socially, and I suppose that’s why she is ok going there. In a way, it is like being on her own. She has refused to see any of her old friends, going as far as to hide in a closet when a friend showed up unannounced at our house on her birthday. 

Foodsupport_AUS, thanks so much for the suggestion of a Skype call. If I am not able to find a residential facility I will certainly set up a session with a therapist over Skype.

Quote
camusicmom

Alta Bates (Herrick campus) in Berkeley, CA has a small, locked door adolescent psychiatric unit that can address EDO. (It has kids with a variety of psychiatric illnesses but usually has several kids struggling with EDO and knows the protocols, has a nutritionist, NG tube capabilities etc) This would be for stabilization medically and psychiatrically.  It
would probably last a few days or several weeks based on things like severity, progress and insurance etc.   It is not like a residential program such as ERC or Rogers that takes a longer term view, specializes in EDO,  and as you mention, I believe requires some level of willingness to stay in the program.  

https://www.sutterhealth.org/services/behavioral-health/absmc-eating-disorder

Perhaps there is something similar in your area that could jump start re-feeding and work with a psychiatrist with the end goal for your d
to be more ready to engage in staying at a residential program.

Quote
Foodsupport_AUS
Great to hear that they have finally taken you and your D seriously. In some ways it is a positive that her ED has come all out and refused to eat completely. Even if not overtly medically unstable if she is refusing assessment not eating they have an obligation to help support you. There is no debate if she is eating enough. 

I hope they can help to support you to get things heading in the right direction. For tonight at least someone else is working on thing, I hope you can get some rest. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
Quote
Torie
I seem to remember that Laureatte, Avalon Hills, Center for Discovery, and Selah House accept difficult cases.  If you call and find that that is incorrect, perhaps they could suggest someone who may be set up to help.

Although I'm sure this day is terrible for you and your d and your whole family, it is positive that you found that hiding spot.  That is the first step to getting her the help she needs.

Please know that we are with you in spirit. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
sunny6
Hello.  I am sorry you are going through this.  We could have written that original post.  We are experiencing the same thing in our house.  We have been told our child is WR or even over and yet the anger, behaviors and the refusal to go treatment or eat because we made them angry is neverending.

We just had the statement tonight that if we don't allow them to be weighed on the same day every week then they will refuse to be weighed.  Our child has been WR for 1.5 years and while some behaviors improved a year ago, nothing else has changed since then.  Everytime we work on moving to phase 2, they slip right back down on weight and all the while the anger and refusal to cooperate increases.  We have tried LSUYE and we have also tried keeping them involved in things and nothing has worked.

I don't have anything to help you unfortunately.  I would suggest that you try to find a children's hospital that has an eating disorder unit.  If you child is refusing to eat and is losing weight, I would think that they will take them in for monitoring for 72 hours to assess what is going on.
Quote
debra18
Maybe kartini clinic? 
Quote

        

WTadmin