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beans

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Reply with quote  #1 
Hello fellow warriors! My soon to be 16 y.o. D suffers from AN with purging. We began FBT in May of this year. WR in June. Six weeks ago we started FBT with a new therapist. She is excellent, having trained in Overlook Hospital in NJ. Our new FBT suggests my d would benefit from PHP. My DH disagreed up until a week ago. Overlook does not accept our insurance. I went for an intake at Gen Psych in Nj. They presently have 3 teens in their program. I was not super impressed with them. Yesterday FBT suggested Center for Discovery which is in our network. DH has a fit because now I want to look into this program. He also is fearful of d missing school. Another option is to wait until the new year. At that time we will have insurance to cover Overlook an FBT model program. I really don’t know what to do anymore.....And I am tired of being the adult all the time. What would you do or have done. Thank you!
eternalhope

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Reply with quote  #2 
You mentioned she was WR in June. Has something changed? Is she unable to gain more weight/lost weight/skipping meals/purging again? Sorry if I’m asking the obvious, just trying to understand. It sounds like you all did a great job with WR through FBT on your own, and I’m wondering why the new therapist thinks she needs a higher level of care. Since you’ve already been successful with the FBT model, you should stick with it, and make sure that the programs that you look at support that model. I don’t know what the Center for Discovery program entails in your area, but I looked at a CFD Residential program in our area, and from what I recall, their methodology was more “independent” based.. each day had 30 minutes of meal prep done by the patient prior to each meal, plus a cooking class once a week. “Fun with Fear Foods” I believe was another class. It just seemed seemed to not be a good fit for us, knowing my d would be returing home ultimately. I would ask them for a sample schedule and really talk to them about their philosophy. While she is still struggling, it’s my belief you, the parents, should still have control over what she eats and the meal plan.
beans

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Reply with quote  #3 
I am sorry that I did not give enough information. The FBT feels that it can help d if she was fully immersed in treatment. D still hides food, cannot plate or chose food. She also has exercise compulsion, picks her cuticles or skin, and body checks. School causes anxiety but attends and keeps grades up. D has no social life. She will occasionally eat in public with us. Our original FBT set a goal weight of 110. We are maintaining it at 112. I am having difficulty getting it higher. There is no purging that I know of since I am at every meal and keep an eye on her until bedtime. Our FBT did say she dislikes CFD meal approach. Everyone one our treatment team (RD, FBT,and DBT) agree that she is “stuck” and needs more care.
mjkz

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Reply with quote  #4 
I know when I've been stuck like that I've made a pros and cons list.

Either way she is going to miss school so to me that is not a concern.  School will be there forever and she can get help with school at the program. 

If it was my daughter, I'd pick the best evidence based program as long as she is not in danger right now from not eating, suicidal, self injury, etc.

It sounds like you really like your new FBT and I'd ask her what she thinks.  If Overlook is available to you after the new year, is there any reason not to wait for that program?  One thing I will say is that you will need to continue the program similar to whatever program she goes into so if your FBT doesn't like the meal approach of CFD, I don't know that I'd seriously consider the program because you will be continuing that approach after she is discharged.  If you are not impressed with General psych, is there any reason to put her there now?  It sounds like these have all been issues for awhile and there is nothing acute pressuring you into getting her into a place ASAP.  Bad treatment is worse than no treatment quite frankly and if you can keep her going until Overlook is available, that would (to me looking in) to be the best option.  Again though I'd turn it back to your FBT and see what she thinks.
Kali

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Reply with quote  #5 
Hi Beans,

It sounds as though you have done an excellent job working on weight restoration for your daughter. It does take a very long time before they are able to eat on their own, and she is only 6 months into weight restoration. 

It is a big decision and I would recommend going with your gut. 
So, if you were not impressed by Genpsych, you could cross it off your list. Why not make an appointment for an evaluation at Overlook and see if you think that might be a good match for your daughter and your family? If she is not in medical danger and is maintaining a weight which is ok for time being (even though you would like her to go higher) why not do the eval in December and then see if she can get in for January? And if the therapist was not impressed with CFD eating approach, then maybe that won't be a good match for how the therapist wants to proceed. 

There might also be an issue in that if she is somewhat weight restored and then goes into a program she may see girls/boys who are thinner and sicker than her and perhaps not eating as well, and that may intensify her desire to lose weight. Have you discussed that with her therapist?

Let us know what you decide and if we can help in some way. 

Kali



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eternalhope

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Reply with quote  #6 
I could not have said it any better than mjkz and kali. I agree, no immediate rush to place her in a program, especially if it’s not the most evidenced based treatment and inline with core FBT tenants. You’re doing a great job keeping her stable. Just takes a long time.
beans

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Reply with quote  #7 
Thank you everyone. My mind is like cotton lately. My kids are even wondering if I have dementia. I feel like I am burning out and not functioning well. You have all put things into perspective for me with your awesome advice. Sending prayers and hugs. May God bless you!
Torie

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Reply with quote  #8 
Hi beans - Welcome to the forum.

I'm glad you are working to push your d to a higher weight.  Many here (raises hand) have found that the professionals set the target weight too low, and anyway, they need to keep gaining a little each year through the teen and early young adult years, as normal kids do. 

I wonder if you have tried reading labels to find highest calorie varieties of bread, yogurt, snacks, etc.  If she will eat ice cream, the premium brands are much more caloric than the other ones.  One thing I learned here that helped so much is that you can add canola oil to everything from yogurt and smoothies to soup and pasta - if you stir it in vigorously, it disappears without changing flavor or texture (as long as you don't add too, too much),  I was really surprised to see how much I could add to stuff.  It increases their intake considerably without increasing the volume they need to get down.

Sounds like you are off to a great start!  Kudos to you and your family!

Please feel free to ask all the questions you like.  We've all been there, have the t-shirt.  xx

-Torie

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tina72

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Reply with quote  #9 
Hi beans,
as Torie said I would think about getting a bit more weight gain. 6 months WR you should see some little baby steps of progress. If not, she might not be proper WR. We too experienced that professionells often set the target weight too low. In our case I tried to increase weight by little steps of 500 g and than waited a bit (one or two weeks) and looked what happened. At about 1 kg above the clinic target weight we saw little steps of progress and then in the next weeks after gaining that extra kg big steps of progress.
And I too would listen to my but and waiting for the new year seem not to be a big risk. You will have enough stress around christmas I suppose so maybe it is o.k. to wait.

" My mind is like cotton lately. My kids are even wondering if I have dementia. I feel like I am burning out and not functioning well."

This is a very nice description of what we are all feeling I suppose! No - that is no dementia [wink] You are just burned out and that is no wonder. Your body and your mind can stand a lot but at one point that all is too much. Try to do something nice for yourself. Allow yourself to have a nap. A bath. A hairdressers appointment.
Make lists and write everything down so you don´t forget important things. I remember when my d was born I felt the same way (she was very stressy as a little baby) and hubby asked the midwife wether that comes from the anesthetic that I forget everything and she said "no, that is family dementia" and laughed...[wink]

Tina72
beans

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Reply with quote  #10 
Hi Torie and Tina, Thank you for giving me a smile 😃. I was giving my d shakes but my dietician suggested we stop. After a few weeks I began again. I will be grocery shopping today and will stock up with canola oil.
As far as self care, I try to attend daily mass, manicures, walk,and other “maintenance”. Last week I had a cold and was also battling a mice problem on top of ED. It’s the little things that sometimes will push you over the edge. I feel blessed to have this forum and the wonderful people here. XO
tina72

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Reply with quote  #11 
Why did the dietician suggested to stop???
It is always the same: you fight ED and the "professionels" [frown]
Go shopping!!! I am curious what another kg might bring up.
Self care: 100 points! Keep on doing this!
You gave me a smile back with the mice problem! I think it was really not funny but I had an inner picture of you running after 2 mice and throwing smoothies on them...I laughed till my stomach hurts. Yes, it is the little things. Sometimes it needs just one drop to get overload.
Send you a hug from Germany,
Tina72
beans

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Reply with quote  #12 
Tina, You are too funny! Today my non ed daughter came home with a flat tire that was smoking and torn to shreds. Now that I wanted to throw a shake onto😀 Be well😘
iHateED

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Reply with quote  #13 
Beans,  You have a very similar story to our D's story from 4 years ago.  She began her journey at the beginning of her junior year of HS.  She attended the Overlook Program after being in their hospital for medical stability for about 10 days.  She did two months of their PHP and another month of IOP and then was discharged, although not WR, she was improving mentally.  I wanted to believe she was "cured" so I backed off from some things way too soon.  I allowed her to participate in her school sport with her Doc's permission so I don't totally blame myself for that one.  I backed off from daily smoothies.   She was not allowed to leave for school in the morning until all her breakfast was eaten and she came out to my car in the parking lot for lunch.  Even with continued meal support she still started losing weight and having more and more ED signs.   Have you considered the 5 day Family Intensive Program at USCD in California?  We attended the program in February 2014 and it was exactly what we needed to kick start our D's recovery.  We came home with a written contract with no loopholes for eating and followed it exactly.  It gave my H and I the much needed confidence to unite against the ED. 

I also think no amount of therapy really works when their brains are starved.  It's like trying to reason with an alcoholic while they are still drunk.  The first and most important step in beating this illness is to get her weight up and probably higher than the docs have said!  If you can get smoothies going again, they were the single most helpful item in our D's recovery.  I don't think we could have gotten there without that 1000 cal a day drink! 

Our D is in college now and doing really well with no signs of ED so there is hope for you and your family.  Just keep going, don't back down from food and tackling the ED behaviors.  Hang in there! 
beans

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Reply with quote  #14 
IhateEd, Thank you for sharing your daughters recovery. It gives me hope! We were planning to go to San Diego last summer after our doctor suggested a higher level of care. Then our therapist at the time talked us out of it. We finally dumped her in October. We are considering U.S.C.D as an option. If you could do it over again, where would you go first?
tina72

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Reply with quote  #15 
"I also think no amount of therapy really works when their brains are starved.  It's like trying to reason with an alcoholic while they are still drunk.  The first and most important step in beating this illness is to get her weight up and probably higher than the docs have said!  If you can get smoothies going again, they were the single most helpful item in our D's recovery.  I don't think we could have gotten there without that 1000 cal a day drink!"
Yes, IHateED, I would sign that! Same with our D!
Try to get back to daily smoothies (with fruit and vegetable and canola oil they look very light and healthy and are mostly excepted). She needs to gain more weight.
Tina72
pjdj

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Reply with quote  #16 
Hello Everyone,

I am not sure how to start a new topic but my story is slightly similar. My daughter was admitted to Overlook Peds ward in September with a very low heart rate and low phosphorus. 10 days later, she went to Overlook PHP. No meds were given to decrease her anxiety which went through the roof during the three weeks of PHP. My D is stubborn and every day was a torture taking her there and back. One day, she threw a fit there and landed in the peds ward again for 10 days. She was then released on the condition that she will do a residential program at Center for Discovery. When we took her there, she got a panic attack and they told us to get out which landed her in another hospital for 10 days in a psych ward. 

Eventually, we moved her to New York Presbyterian Eating Disorder Program (inpatient). She was there for 15 days and discharged last to last Friday in the care of her pediatrician, therapist, nutritionist, and psychiatrist at a weight of 92lbs (5feet 3 inches). She quickly became 90 pounds as my D's main issue is stubbornness. If she says,"I will not eat." Even the medical staff can't make her eat. If she says, "I will only eat this much," she will. How do I break this 'control' or 'stubbornness' of her? I admitted her again to NYP last night but when we called, she skipped dinner, and snack and breakfast today. They say they only encourage. I am not sure if I chose the right hospital as they should know how to feed a child. Is there anything, type of therapy,  a solution to make her stubbornness go away?  She is deemed as an extreme case. Please help, I am heartbroken. I can't stay away from her anymore but also want her well again. Has anyone faced these extreme 'control' issues?  
tina72

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Reply with quote  #17 
Hi pjdj,
welcome here, I am glad that you found us. You will get a lot of help here, as we did. Ask whatever you need.

To set a new topic you must see a orange "new topic" button right above the page and below the "welcome, pjdj". If you don´t see it there, go to "eating disorders learning center" at the top and then to "hearing from other families" and again to "ATDT" and "Browse the discussion forum". Then you should see the "new topic" button on the right above the site.

Your d is not stubborn, she is just too ill to be able to eat. She is so frightened about eating that she is really not able to. There is a guy sitting in her head and he is pointing a gun on her head and tells her he will shoot her if she eats. That is the situation. How old is she? Where do you live (region/state)? That would be helpful to be able to help you better.

Theses control isssues are totally normal with ED and anorexia. That is not special in your case. She is trying not to eat.
The point is you must find a way to make her eat again. FBT is the best way to do that, and it is evidence based, so it prooved that it works.
In the "Eating disorder learning center" you will find a lot of information how to do that.
A great treasure is Eva Musbys book "Anorexia and other Eating Disorders: how to help your child eat well and be well: Practical solutions, compassionate communication tools and emotional support for parents of children and teenagers". You will find great advices for nearly every situation you will get in there.

She needs to eat and you need to find a way to require it from her. You are in charge for meals and you plate what must be eaten. Life stops until she has eaten. No school without breakfast, no handy, no friends. Eating is the most important thing from now on. 24 hours without eating or drinking is a case for ER. It is very dangerous when they get dried out.
You would need some help to be able to do that. It is hard and it is no short solution, it is a marathon. But it is the only way to get her back. Her brain is very malnurished at the moment and is not working any more. She can not make good decisions on her own. It is a severe and terrible brain disease. But recovery is possible. Refeeding is the solution. There is no other way. If you don´t get her to eat, she has to go to IP and get a nasal tube if necessary. Not eating is no possibility. Food is the only working therapy. If she is nurished again and in a healthy state, her brain will heal again and the ED behaviour will get less by time.

Give us some more information and ask whatever you need. We have been where you are. We know how you feel.
Don´t give up hope. Your beloved d is behind all that waiting for you to help her get rid of ED.
Tina72
EC_Mom

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Reply with quote  #18 
So sorry to read about the poor care your d is receiving. "Stubborness" about eating is the central feature of this illness. It's what makes it a mental illness, this is the central misunderstanding about 'control' and 'stubbornness' that most of us on here have had to "unlearn".

It's NOT your d's choice. So hard to believe, but true. Most of us on here can report that our "real" kids reemerged after refeeding and the whole language of "control" that outdated treatment uses MISLEADS people. it's not your d who wants control, it's the illness that is controlling her and making her act this way.

What this means is that "only encourage" won't usually work. She must be REQUIRED to eat. Your treatment place is dealing with non-evidence-based, misguided models of treatment. 

Surely someone on here from NY must be able to give you some suggestions for evidence-based programs? It is scandalous that an inpatient would be allowed to go hungry while the illness rages and does not allow her to eat. 
sk8r31

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Reply with quote  #19 
Beans, our family went to UCSD's 5 Day Multi-Family program in 2011, with our then-17-year-old d.  She had been ill for 3 years, and we'd struggled with inadequate professional support during that time.

I can say unequivocally that going to UCSD was the 'lightbulb' moment for our family.  I can't speak highly enough about the hands-on support, skills and tools that we gained during that time, that allowed us to help our d to move forward into full recovery.

Definitely, give UCSD a call & speak with an intake specialist to see if the program might be a good fit for your family.

Sending warm support,
sk8r31

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Kali

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Reply with quote  #20 
Hi pjdk
Have you looked into the Columbia/NYSPI program on 168th street? Excellent and evidence based.

Kali

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Torie

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Reply with quote  #21 
Hi pjdj - So sorry you needed to join us here.  I think there are different levels of "stubbornness," which I hope is okay for me to say since my d was on the "less stubborn" end of the spectrum (although still very stubborn).  It sounds like your d really needs a superb team, which, unfortunately is really rare.  Kali and sk8ter have given you good suggestions to consider as a starting point, at least.  Many / most here (raises hand) started out with "professionals" who were unhelpful at best and actually worse than no help at all in many cases.  

Forum member Eva Musby created an excellent video I'll paste below (she also wrote an excellent book).  The first time I watched the video, I realized she has a magic touch with these things so I tried to imitate her.  That same difference exists in professional teams (not just parents).  The great ones just have a way with these kids.  The bad ones? Well, they're like I was, starting out - fumbling around saying all the wrong things and often times making things worse instead of better.

Please feel free to ask all the questions you like.  That's why we're here.  xx

Torie (video follows)

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iHateED

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Reply with quote  #22 
Hi pjdf and welcome to the group.  Sorry that you need to be here but you will find some valuable support on these pages.  Ask lots of questions.  I will say that a program that ONLY encourages the patient to eat is not following evidence based treatment.  Eating needs to be rule number one and there needs to be action if food isn't eaten, like an NG tube feed. 

Beans, To answer your question if we could do it over again --  I would definitely do the USCD one week program first.  I stand by my belief that no amount of therapy works while the brain is starved so my D's time spent in PHP did nothing for her mentally.  She did eat their food (unappetizing hospital food at the time, not sure if they brought in a cooking staff yet).  I would say that a majority of our kids are in the stubborn/ non-compliant category.  It was really hard to get our D to eat at home.  We had food thrown all over the house, smoothies thrown at the wall, full dinners sprayed with cleaning products - the list goes on and on of what she did to NOT be able to eat the food in front of her.  But it's not your D who won't eat, it's the ED in her brain that won't let her eat, so you have to figure out how to be more persuasive than the ED.  This allows your D to tell her ED, "sorry but that are making me eat".    The contract we came home from UCSD with is what helped my H and I get on the same page and stick to the rules.  After PHP we too quickly allowed for not eating the last bites, going out to dinner with friends (of course we wanted her to have a normal life and we thought she would eat with her friends) and other behaviors that allowed the ED to take hold again even stronger.   It is sad for them to miss so much school (our D missed about 3 months in total her junior year) but life is an arbitrary time line and school will always be there. 

Hang in there and just keep feeding.  Are you following a Life Stops til you eat model?  Full breakfast and then she can go to school.  Meet her at school for lunch, and then she can return to school.  Use whatever motivates your D to get her started.  Snack after school and then maybe a volunteer activity.  No sports.  No gym in school, get a 504 plan and have your D go to a study hall instead.  Our gym teacher just gave D a paper to write on a pre-approved topic.  Same for Health class -- have her do a study hall instead and have a pre-approved topic for a paper instead. 

If you really think your D needs meds there is a good psychiatrist in Madison, Dr. Omar Canosa.   He was at the Overlook program in 2016 but left for his own practice. 



beans

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Reply with quote  #23 
IhateED, Thank you for your suggestions. I do drive to lunch each day. She presently eats all of her food with only trigger foods as a problem. I started to increase the canola oil. I also give her vitamin E and D3. The fear of PHP is a motivator. I am using it to break the exercise compulsion.

I agree with you that the brain must heal. I am surprised Overlook did not work on a contract and set up aftercare. I am sorry your daughter and family had to take this journey. Dr. Omar Canosa never returned my call but I never tried calling a second time.

We will meet with the therapist to discuss our options again this weekend. So we will see ...


Pjdf be strong! You can do this. In the beginning (and I still do). I would hold and kiss my daughter like she was a baby. Keep telling her how much you love her. I sometimes feel like I am reparenting. Also go on u-tube. there are great videos to get a quick ED education. One suggested “be a wall”. That was a mantra that I played in my mind during initial feeding. Prayer also helped when ED was stubborn. Hey, use whatever works. You have the power to beat this demon!
pjdj

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Reply with quote  #24 
Thank you all! My daughter just turned 13. We are in New Jersey. I will start reading Eva Musby's book now. If I tell her she can't go to school, she throws herself on the ground. If at school I tell her to finish, she raises her voice and has no issues if the staff walks in. She enjoys school. Basically, she can't handle consequences. It is not that she is not eating, she is not eating certain kinds of food and restricting calories. 

Well, now she is at NYP and hopefully, she puts on some weight there. 


Torie

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Reply with quote  #25 
Quote:
Originally Posted by pjdj
If I tell her she can't go to school, she throws herself on the ground. If at school I tell her to finish, she raises her voice and has no issues if the staff walks in. She enjoys school. 


It's kind of like having a toddler again, isn't it?  Not to scare you, but there are people here who still have bits of smoothie on their ceilings and dents in their walls.  I can't remember who it was, but someone started using the china she didn't like that her MIL had given her because her d was throwing the plates of food and breaking them.  So that dinner service is history.  Others have had to call the police.

It's shocking, it sucks, and no one can believe we have to, but we do learn to deal with it. 

One tiny suggestion is to phrase it not as "you can't go to school," but as "when you have finished, I'll take you to school."  A harder suggestion is to roll with it - if she throws herself on the floor, take her meal and sit down with her on the floor.  If she runs away, follow her with her plate.  If she raises her voice at school, perhaps the principal can designate a relatively soundproof room for her to eat in.  

You can do this.  Hang in there. xx

-Torie



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