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

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I have been reading the site for several years. I need some advice. My daughter diagnosed at 13. Treated twice at kartini. Full 12 and 14 week stays. With out patient follow up. Now 16 just finished residential at ERC Washington and is in there php program. Not weight restored yet. They are moving slow. Barely making a pound a week gain. She has been in their care for 5 weeks. We are considering pulling her and finishing re feeding at home. Has anyone ever pulled their child against medical advice? Our daughter has been completing 100% the entire 5 weeks not booster once. Says she wants to get better. Would like to do this at home now. Is willing to let us weigh her and manage her meals. Has a recovery plan laid out. In terms of working on self care and managing her anxiety. She is now 16 and has gained insight and brain development. Would I be crazy to take her out? I just don't see what value they are giving us other than doing her meals. She probably has about 10 pounds to go to WR. Any thoughts are welcome.
It sounds as though your daughter has deteriorated significantly since you last wrote in May. At that time you were apparently trying to do things at home. My question to you would be what makes now different to back then? She was struggling then, but trying. When you did the outpatient part at Kartini how did that go with you in charge? Did you get to truly weight restored or did things stall? You have been at this for a while. You know your D best, and her eating disorder, and will have the best idea as to how much of a struggle it is going to be. 
Some here have taken out AMA and have had success, but at the same time there are others who have truly struggled. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
My  motto is if it ain't broke, don't fix it.  Why not wait until she is weight recovered?  You have all gone through a lot of treatment but it seems to stall at some point because you have to go back.  Is there a downside to letting her stay until she is weight recovered and beyond?  Also you want to make sure that you don't get stuck with a bill.  If your insurance is covering it (including medicaid or medicare) when you pull out AMA, you could end up having to pay the entire bill.  Just another one of those wonderful cost saving measures but is pretty effective I think in some ways making it harder for people to discharge prematurely.

I guess if it was my daughter, I'd be telling her if she wants to get out sooner, then she needs to eat more and gain faster.  You can do this both at home and at the PHP.  Even if she is eating everything, she can still eat more and more calorie dense foods to get that last 10 pounds or more on sooner.  I would also point out that the last 10 pounds are often the hardest so just more food for thought (pun intended)!!
I'll throw in my two cents worth...

Have you considered the UCSD 5 Day Multi-Family program?  It was a lifesaver for our family, and after 3 years of ineffective professional support and feeling stuck, it gave us all the skills and tools to keep moving forward at home.

It helped my h & I to truly be on the same page, and the valuable contracting skills helped us to help our d to get to WR within a couple of months at a gain of about 2 lbs/week.

It may be very much worth your while to speak with an intake specialist or a therapist to see if this might be a good step forward for your d and your family.  I spent more than 2 hours on the phone (over a couple of calls) and it helped us to decide that this was a good option for our family.

Sending warm support,
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
Thank you for your thoughtful responses.
In terms of insurance I called and they said it was fine. They would pay for any services she received. We just needed to be sure to tell them if we left so they paid no more.
My daughters exercise compulsion kicked up in late June. And caused her to lose significant weight. Residential ended the exercise. And we now know that her restoration of her acl physical therapy work must all be supervised. So we are having her work only with physical therapy.
We chose erc Washington because we wanted a local option that would help her go back to school etc. we had hoped to start at php and be stepping down. She has missed school in the pass and we would like to avoid missing school this year. So we choose a local option hoping we could move her to iop. Other than help with weight restoration we haven't seen a huge benefit to the treatment and groups. She is applying the skills she has learned from residential and past experience.
We had considered ucsd family intensive instead of erc but wanted to try the local option. Confirmed for me why w had gone kartini before.
Her therapist calls her the wrong name. Wasn't aware of her OCD diagnosis from their in house psych. They have been inconsistent with her meal plan. I attended a group family session and it seemed like the therapist leading it wasn't prepared or interested to be there. My extinct just feels like it's not a good fit for our family.
But - like you said there are some things working. She is using the skills. She is making very slow gain. We have had a lot treatment. My daughter always slips after being released from care. Somewhere between 6-12 months post weight restoration. So I have learned out patient after care is going to be extremely vital to sustain long term recovery.
Please keep giving me advice. I want to do what is best for her.
Thank you for the ucsd recommendation. I think it might be the best fit for our family. O needed her to get medically stabilized for them to accept her. Which I was planning on residential doing. But since they didn't give her, her full meal plan during her last 4 days of residential she actually lost weight in their care. The dietian either forgot to circle her extra food or the kitchen. No one will except responsiblity. My daughter was the one who said I am not getting x and I am suppose to be.
I think I will need to call ucsd San Diego.
Hi snomom,
I think if she is losing weight there it is time for plan B. With my d they had no good food plan in hospital here and they needed 3 months to make her gain 5 kg. At home we got 2 kg in 3 weeks. We took her home against treatmend teams opinion but not against medical advice because there was no need for hospitalisation at that point any more. The treatment team just thought that refeeding at home is simply not possible - greetings to all those who have done that successfully! Ed treatment in germany is quite middle aged...
But as the others said you need to know that it will really work at home. I do not know all the organisations and programs mentioned because we don´t have that here in germany. We only had that plan B of taking her home and for us that was the best decision because it went worse in hospital. But if I had the alternativ of a better and useful IP programm I´m sure I would have chosen this up to weight recovery. Its hard enough to keep that weight at home [smile]
So that is my 2 cents...
Keep feeding. There is light at the end of the tunnel.
I wonder if it would be possible for you to lean on the current facility to get them to step up their game.  Since she is gaining there, but slowly, I would personally be reluctant to pull her out.  Have you asked them to increase her intake and if so, what do they say?  Do you think you could get them to record what your d is eating for your review?  Since they admit they haven't been following through with their own plan (although they don't agree exactly who is to blame for their lapses, they do agree she missed out on some food items), you are justified in being more intimately involved in the process.

I'm not sure how their PHP program works.  Is she eating some meals and snacks with you?  If so, can you increase the calorie count while she is with you?
As you know, it shouldn't take too long to pack on 10 pounds.  My suggestion is to keep going with the current facility while pressing hard for increased rate of weight gain.

Just my two cents. xx

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Have you given UCSD a call?  I truly think that it would be worthwhile to find out whether the program would be a good fit for your family.

You would get tools, skills, including contracting, that all have made it very possible for a relatively quick WR, & most importantly, how to manage going forward at home.

Sending warm support,
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
First of all thank you for all the support and advice. It helped me make a wise decision. On Monday we brought our D home. In the end it wasn't against medical advice. They would have liked to keep her longer but she was at 93% weight restored. She is doing well at home. Eats everything we give her. Doesn't question. Is agreeable with us weighing her a few times a week. She met a new therapist and will be seeing her once a week.
She is laughing and smiling. At Thai weight she begins to feel better and have more energy. You begin to see more of her and less of the anorexic. We still have a weight to gain. But as long as she stays this cooperative we will be good.
Thank you to all who supported and gave me advice. It is such a gift to have others like you to ask questions of. I appreciate it. Thank you again
Oh, that is good news, snomom!

Keep us posted:we'll be cheering for you!

D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]