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

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anonff6
My 18 year old daughter with AN - BP type transitioned from outpatient with an ED therapist and dietician to an adult PHP program a month and a half ago.  She is supposed to go to college this coming fall so they recommended that she be in the adult program to prepare her for living on her own in 7 + months.  However, we are finding that she is losing weight (I estimate about 5 pounds since she was admitted) as she is struggling to eat on her own.  It is hard for me to watch as her parent who had been feeding her meals around the clock under the FBT model - she had been weight restored, then had a setback after being given too much freedom too fast and then we weight restored again but she admitted to using behaviors like purging and laxatives and that is when her team recommended PHP because of the lack of honesty and desire to truly get better.  I guess she isn't using those behaviors anymore since entering PHP but she is now restricting.  I estimate she eats about 60%-75% of her meals and snacks.  We are being told to stay the course as she will inevitably fail but that at least she isn't using behaviors such as purging and laxatives and we are just seeing her struggle with plating and feeding herself instead of us doing it for her.  She is getting frustrated and feels hopeless and that she is "worse" than she was before and she still feels like her ED is very strong, probably not surprising given her weight has declined ....and I can't help but feel like she is worse given the weight loss.  Has anyone been through this before??  I feel like I havent read or heard of this happening.  Our therapist is telling us that it is better for her to struggle at home with all this support around her than it would have been to keep her on FBT and have this happen when she is at college.  Thoughts or experience to share??
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ValentinaGermania
We did not have an adult PHP program here but my d was nearly same age in refeeding and we had the same problems so I can tell you what we did.
My d was 17 when she was diagnosed and 17,5 at WR and she was supposed to go to University about a year after that. We did not stop doing FBT when she got 18, we did it a bit more like FBT-tay (transition age youth) at that time.
Here is a nice picture about the difference from great Eva Musby:
Bildergebnis für bilder fbt tay
We had a contract and we asked her to chose a University she could reach by public transport and stay living with us for the next 2 years and we asked her to start with a reduced schedule (she is in year 3 of recovery now and still on that reduced schedule) so she can eat most of the meals and snacks with us (I still plate lunch which is the biggest meal here in Germany). We practised eating in the cafeteria and where to find good snacks in between meals.

That worked for us. Not too much freedom but as much as needed. Many supervised meals (she does not feel supervised any more but likes to eat in our company now). A safety net and consequences if she loses weight (she signed papers so that we know her weight and can speak to all doctors). If she would loose more than 2 kg she knows she has 2-3 weeks to turn that around and if that does not work she needs to take a gap semester. If she would skip a meal she knows we will take her car key. This was all written down but we never needed to do that in reality up to now (knocking on wood).

She maintained her weight for about a year before we allowed her to go to University and that is what most treatment centers recommend I think. So if your d loses weight at the moment and cannot feed herself I think it is a bit risky to send her to college in only 7 months. What about a gap year? She should be in best possible state to avoid a relapse...
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
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 We are being told to stay the course as she will inevitably fail but that at least she isn't using behaviors such as purging and laxatives and we are just seeing her struggle with plating and feeding herself instead of us doing it for her.  She is getting frustrated and feels hopeless and that she is "worse" than she was before and she still feels like her ED is very strong, probably not surprising given her weight has declined ....and I can't help but feel like she is worse given the weight loss.  Has anyone been through this before??  I feel like I haven't read or heard of this happening.  Our therapist is telling us that it is better for her to struggle at home with all this support around her than it would have been to keep her on FBT and have this happen when she is at college.


I am really struggling to see the plan here. She is gradually losing weight and things are not going well. It does sound like she needs more assistance than she is getting and I it doesn't sound like a wise idea to just watch her get sicker. It does sound like she needs more assistance to choose better and do what she needs without necessarily going back to FBT.  I also agree with Tina that given how things are going a gap year may be a great plan. 

We were five years in when D went to university. She was still not fully recovered but it was also clear given the course of her illness prior that we were in it for a longer haul. I had been plating all meals and supervising absolutely every meal for the first four years. Around 12 months before she was due to go to university we started on D feeding herself. She would choose breakfast and snacks, I made lunch and dinner. She slowly developed more independence around lunch too leaving dinner as the sole meal I managed for her. Since D was planning on university close to home the plan was always for her to be home for her first few years of university and commuting. We had quite a few stumbles and some weight loss in that first year, but she was able to work on it with support rather than  being left to sort this on her own.  It sounds like your D does need more assistance than she is getting now, and it is not clear from what you have said how it will be decided when things need to change. I would be asking the therapist's plan for this and considering looking at greater support for D.
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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Torie
I agree with Tina and Foodsupport.

"It is hard for me to watch as her parent who had been feeding her meals around the clock under the FBT model - she had been weight restored, then had a setback after being given too much freedom too fast and then we weight restored again but she admitted to using behaviors like purging and laxatives and that is when her team recommended PHP because of the lack of honesty and desire to truly get better."

I would listen to your parental instincts here, and I would not be willing to watch this.

"We are being told to stay the course as she will inevitably fail"

Whoa whoa whoa!  Failure (relapse) is not inevitable!  I think Tina was told something like that, but she ignored that bad advice and kept supervising with FBT.  Her d was the ONLY one who did not relapse out of the 7(?) girls she was in treatment with.  My d is another who did not "fail" after weight restoration.

"I can't help but feel like she is worse given the weight loss."  

Again, I urge you to listen to your instincts.  

Gap years have become much more common in recent years and can be a great option for our ED kids.

In your shoes, I would be tempted to grab my d and run from this "help" that is letting your d lose weight. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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ValentinaGermania
anonff6 wrote:
We are being told to stay the course as she will inevitably fail


I go with Torie and I think that it is really cruel to say something like that to you. It is like saying to a cancer patient "we do not need to give you chemotherapy, the cancer will grow again anyway". I think it is not professional to wait until the patient hits the bottom in modern ED treatment...
Keep feeding. There is light at the end of the tunnel.
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Kali
Hi anonff6,

We also had a situation with our then 18 year old daughter where we gave her the option to feed herself too soon and she lost weight. You can't know whether she is ready or not without trying. Then we stepped in again with more structured refeeding. So there is nothing wrong with you stepping in now and deciding that there should be no more weight loss. If she is not completing her meals at PHP you can discuss this with them. Do they ask that she drink an ensure or supplement if she cannot finish? If the goal is for her to be able to go college in September and she cannot feed herself enough, maybe she will need to defer a year or attend a college near home. Can you get back in there, and make sure she is eating enough at home again like you did before? She is clearly not ready yet and that is pretty typical for the illness. It takes time and she will get there but not by losing weight and restricting. 

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We are being told to stay the course as she will inevitably fail


I don't understand what the point of letting her fail is. It seems like a more positive model to encourage her to be successful and to make whatever accommodations she might need in order to get to that place, be it plating her food, sitting with her at meals, restricting bathroom use after meals, or having further discussions with the php in order to make a viable plan between program and at home that she loses no more weight under their care and in fact gains it back.

Success is also different things for different people depending on their challenges. For someone with anorexia b/p (which my daughter was also diagnosed with) making sure she could not visit the bathroom after meals for a long while helped her be successful in stemming the purging behavior. Then later trying college part time while living at home after being in treatment was a successful stepping stone to being able to go away to school afterwards, still with plenty of support from both family and a professional team. She successfully finished college recently and is home now. She is able to feed herself and to cook and shop and eat what she makes but it took a long time and a lot of support to get to that place. My advice would be to ask your daughter to envision what kind of life she would like to build for herself and what interests she feels passionate about, then supporting her to get there small step by step while she is going through this very difficult illness. 

warmly,

Kali
Food=Love
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