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.

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formygirl
We have been fighting ED since July 2014, when my d was 14. We have used FBT, IOP, and a variety of approaches over the years. She was ready to go to college in fall 2018, we were concerned, but she was at a good weight and she was so determined. By the time she came home at the end of her freshman year, she was in bad shape. She did PHP over the summer and agreed that she would take off first semester of sophomore year to make sure she was ready to return to school. She spent 4 weeks in residential and then returned to PHP.
We know she is not ready to return to school, but were working with her. Since she is 19, we hear very little about her progress. Yesterday, we found out that, as of 2 weeks ago, she was required to gain at least 1 pound per week to remain in program. She did not gain sufficiently this week and is now out.
Now what? She is 19 and refuses to let us dictate her meals, she cannot do it on her own, and the program that was supposed to help her will not (just a note, she was completely compliant while in program, she was unable to gain because she restricted while she was home).
I have felt hopeless at times over the past 5 years, but now even the experts won't treat her. What in the world are we supposed to do?
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Foodsupport_AUS
I am so sorry to hear this. It is one of big frustrations of programs that require buy in from the person with the illness, when if they could do what they needed to do without that support, they wouldn't need it at all. 
I saw that this program has recently announced a new date in January at UCSD. Your daughter sounds likes she would be perfect for this program which offers the new temperament based treatment to get more buy in from her and also trains you to try to coach her more effectively. 
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.
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Scaredmom2019
I wish I had words of advice but i dont. I just want to say you're an amazing mom. You're doing all you can. That is asinine that they wont keep treating her. We are having a similar issue with trying to step down from PHP to IOP and them saying she needs more PHP.... its been 12 weeks!! They have left us with either do 2 more weeks of PHP or nothing. They wont let us step down.
Sometimes I get the feeling these places are outcome driven and not at all person centered. Is there another center near you? I find their response to your D's needs very disheartening. My D is 17 almost 18 so your story hits home for me. 
Hope you can get some supports. Hugs.
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ValentinaGermania
Hi from a mom of another 19 year old 🙂.
"She is 19 and refuses to let us dictate her meals, she cannot do it on her own"
It is harder to help them when they are "adult" but not impossible. I think she is not financially independent and she needs your money. So you can set rules. We have a contract here with our d. We wrote down all we will do for her (pay for living, food, insurances, car, phone, we even added the money to show her what summ that is in a year, and what she must do for that: eat 3 meals 2 snacks, gain or maintain (whatever is needed), go to GP regularly, get weighed, be compliant, give us information etc, no moving out for the next 2 years).

For sure she refuses to be compliant, that is part of the disease. She does not want to gain and she will do all that is possible to restrict. But you can try to make restriction impossible again. I am quite sure she will be compliant if you cut down internet, phone, car and all other living when she is not. Life stops until you eat can also work for a young adult. She does not need to be compliant with it. She only needs to eat.

"she was unable to gain because she restricted while she was home"
In the state your d is in my d was not able to make good decisions and NOT restrict when she could decide so we kept plating food at home for a very long time (I still plate lunch which is the biggest meal here when she eats at home). Many IP programs ask the patient to be in 100% control of food at home and that does not work while they are still sick. They need rules and boundaries for a very long time until brain recovery is done. It is important that restricting is impossible at home.

"She was ready to go to college in fall 2018, we were concerned, but she was at a good weight and she was so determined."
How long has she been WR before she went to college? Are you sure she was on a good weight or simply not underweight any more? Had her behaviour changed and did she eat all that she ate before ED moved in?

If it was mine I would either go that way and ask her to live at home again and follow your rules with FBT again or take her to UCSF or UCSD to get the program started again. They have a young adult program called FBT-tay there.

Could she go to a college near your home and stay living with you once she is ready again? Is there an option for online colleges? It really takes a long time before they are ready to leave home. I think most professionals suggest that they must be at least 1 year without any symptoms before.
Keep feeding. There is light at the end of the tunnel.
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Enn
I am sorry about what is happening.  You truly have done everything and more. the program that Foodsupport has posted
may be an option. Please check it out. 
You of course understand your ds ed best.
i don’t have any advice or suggestions for you as I have not been in your shoes. But I am sending strength and kindness your way.
🤗
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Kali
Dear formygirl,

It is so easy to get discouraged after doing this for a long time as you have been.
I feel your sadness but want to encourage you to keep going.

I am sorry that the treatment center was not helpful. My d., too, was asked to leave a treatment center at one point. She was not cooperating and they wanted her to go to a higher level of care. From my point of view I felt that since they were clearly not helping her I made other arrangements which were better suited to her situation.

I too think that the one week program in San Diego could be helpful for your family and is coming up soon in January. It could help you with feeding her at home and having an agreement about recovery and what would need to happen so that she could successfully return to university and do well there.

How much weight would she need to gain to be within her target range?

We also brought our d. home from college and she went into treatment. She was home for a year before going back and trying again. I was very strict about mealtimes, meaning that there were 3 meals served and 2 snacks, day in and day out in our house, and this went on for a very long time. It was not a straight line, there were steps forward and backward. 

Before she was discharged from residential we met with the dietitian there. My d. was tasked with creating a list of meals she would eat. All meals had to have enough calories and nutrients, and she had to choose 7 dinners, 7 breakfasts, 7 lunches and 7 snacks. The dietitian worked with her on them and after she approved them I was given the list and I started making them. Perhaps you could do something similar. The fact that my d. had "chosen" the food may fly against FBT however it worked for us and since she was 18 I thought it was fine for her to have the opportunity to say what she would prefer as long as it had enough calories. Since your daughter doesn't want you to "dictate" her meals perhaps you could try something like this. Mind you she did not prepare the food, I did. And we ate it together. I posted the menu for the week on the fridge so that she would be prepared for what was coming. I still have the "meal plan" and if you would like I could send you a photo of it back channel. We started out with that and broadened the menu as time went on, and depending on her weight and state, I adjusted the meals to have even more calories sometimes when that seemed necessary.

When our d. had stepped down to outpatient treatment and was weight restored she did a semester as a visiting student and took a part time course load at a nearby university while living at home. Since she was on medical leave, we were able, with a drs. note, to work it out beforehand that her original university would accept the credits and transfer them. That gave her the opportunity to see how the stress would affect her and also to practice eating lunch out of the house. She had family members at the school who could eat lunch with her sometimes. When she had successfully completed that semester and was still at a good weight, we allowed her to go back to university 4 hours away. I will not say that it was a straight line there either. I kept in close touch, she had a team there and had to go get weighed, and all the paperwork was signed so that if necessary we could speak with her providers. I had an eyes on visit at least once a month and when she took weight dips, which happened, I stepped in and required that we make a plan. I spent a lot of time up there with her eating and making sure that she was ok. I gave her a credit card for food so that she could never say she didn't have enough money to eat. She was very motivated to be at school so we tapped into that to help her stay recovery minded.

Some say that recovery can take between 5-7 years. (I know there are some who recover in less time but that was not us) When we got to the 5 year mark I started to feel very tired, however the thought that she could recover at any time kept me going.

warmly,

Kali







Food=Love
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Francie
Dear Formygirl, There are always options. There is always hope. You have received good information here. Since your d is an adult you may find that taking a collaborative approach might work. Our d was discharged 3 times this past year for not going to IOP treatment. It turns out it was not a good fit for my d on a lot of levels. Maybe there is another location that you can consider? Does your d have any outpatient providers? A dietician or a therapist she can see? A pediatrician or MD who can check her vitals on a regular basis? For us, treatment has been a requirement for our D to be able to live at home. Our D is also a young adult. Best wishes to you. XO

Francie

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formygirl
Thank you so much for all of your suggestions and support. I have explored the SD intensive treatment and I am hoping we will do it (h and d not yet on board). We are seeing her physician regularly who is an ED specialist, so that is helpful. At this point, my h and I are in agreement that she cannot return to school. Unfortunately, d does not believe us, and I do not think she will fully engage until the time to return has passed. I know we have no choice, but it makes me so sad, she has a wonderful, supportive group of friends at school and was doing well academically. I cannot stand how her ED has changed my sweet girl.
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ValentinaGermania
She will go back to that group and she will get on with all acedemical stuff when she is ready and healthy. My d was out of school for 4 months and then reeturned on a half schedule for the rest of the year and graduated with her class (and on a very good level) the next year. AN kids are mostly high intelligent or even gifted. School is not important at the moment. Health is more.
If I had known SD or could afford it finanically I would have been on the first flight. Do that.
Keep feeding. There is light at the end of the tunnel.
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