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Francie

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Reply with quote  #1 
Hi Friends,

My d took herself out of college in Feb (her dad and I did not agree with her signing up in the first place) to enter PHP treatment. She needed Residential but we agreed to PHP because she has a cashier's job that she's very proud of and we considered it to be something that would encourage recovery.

Now 12 weeks into PHP what has been accomplished is:
  • Some degree of normalized eating (but meals are small)
  • Significant reduction of b/p behaviors 
  • Healthier blood work results
  • More truthfulness and transparency with regard to behaviors

But her weight remains very low and in fact I am not sure how much she's gained while in program. She's approx. 15-25 lbs under what her growth chart would suggest, and we got word that they're ready to step her down to IOP in a week or two. Should I be expecting weight restoration as part of recovery and treatment before she's stepped down? I brought this to the T's attention and she said that if my d shows signs of relapsing they can step her up again. But then we're looking at potentially another withdrawal from college.

I reached out to the state health care advocates office so that I can appeal decisions by insurance so this is what I am preparing for. Last year insurance kicked her out of residential after 19 days. The followup PHP and IOP left her sicker than before.

I am not sure hubby will side with me re: appealing the step down. 

I guess what I am saying really is that it doesn't feel right to me that she's not at a healthier weight. Do I have that right?

Thanks in advance for your input. XO

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Francie

melstevUK

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Reply with quote  #2 
Hi Francie,

Great news about the improvements in your d's health. That s such a relief.
Personally I would appeal to keep her in the PHP programme and make getting extra weight on as part of that process. I feel pretty sure that there will be a kickback in terms of b/p if a demand to put more weight is placed upon her and you want her to have intensive support while she goes through that stage.
I don't know your systems too well but I would be making that argument to whoever needs to be informed. While it is great that b/p behaviours have reduced, weight also needs to be going on as well and it seems her team are not making this a ficus when it needs to be.

But still good to know there are positives and that your d is accepting help.

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Foodsupport_AUS

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Reply with quote  #3 
It is great Francie that there are so many positives for your D. Like MelstevUK I can't speak to what would be expected in IOP vs. PHP - however it strikes me that weight restoration is a part of treatment for eating disorders and if that is not happening then the reduction in behaviours may even be a part of the the ED feeling "safe" - that is is controlled diet no weight gain able to keep on eating. This of course is not a long term way to recovery. At the same time with older kids keeping them engaged in the treatment process is important, it is better to gain weight very slowly without compensatory behaviours than to have nothing change. Our children have an anxiety disorder, so they can be so frightened of the treatment they can leave, a common problem with older kids when they struggle with their treatment. So 2lbs a week would be amazing but if she gaining 2lbs a month she is still getting there albeit very slowly. 
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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Kali

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Reply with quote  #4 
Hi Francie,

How nice to hear that your daughter is making progress! It has been a long hard road for your daughter and your family.
It does seem to me that if things have improved while she is in the PHP she is currently attending, you might be right to try and have her stay there lengthened. 

As far as her weight, yes I do think that it needs to be addressed somehow. Either at program or at home or both. But perhaps it isn't necessary to tell her that. Since she is eating more regularly, are you able to try to quietly bump up the calories she eating at home and at the same time work towards increasing her portions?

warmly,

Kali

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Francie

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Reply with quote  #5 
Thank you everyone. I feel so grateful to have your input.

Melstev- Thank you for the reminder that with weight restoration, the ED is going to strongly resist. Your comment helped me add some of that detail to an email I'll be sending to the provider and make it an argument to continue the current level of treatment.

Foodsupport-AUS - Your remark about the possibility that the ED feels 'safe' hit me like a spash of cold water on my face. I'm afraid that could be a possibility. Your remark also caused me to add some more emphatic wording to my note to the therapist - an additional argument to maintain her level of care.

Kali - I am not making any food for my d. Her program (Walden) requires her to prepare all of her program food and she's extended that to home. We do eat packaged snacks and meals together as much as is possible, but her meals are different than ours as she vegetarian. Problem? Yes, probably very much so. I'm working on it. I feel I've got to move slowly with her - that requiring too much too soon will frighten her away from treatment. 

Thank you again for your time and good ideas and thoughts. I am very grateful for your help. XO



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Francie

Francie

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Reply with quote  #6 
Hi Friends, I'm writing in the hopes of getting some HOPE. We just ended a family meeting at my d's treatment center. I had asked about her weight and finally was given the news that my D hasn't gained any weight in 11 1/2 weeks. And it looks like in a week or so she'll be stepped down from PHP (30 hours a week) to IOP (15 hours a week).

I am seeking some message of hope here, please, if you will oblige. My d is about 20 lbs underweight. I had read once that a future indicator of my child's bility to kick this disease is dependent on her being able to gain weight in treatment. Well, she hasn't. Can anyone relate? Is there a message of hope out there? 


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Francie

mjkz

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Reply with quote  #7 
Francie, my daughter has never gotten back to her growth curve.  She is still considered "underweight" by about 15-20 pounds.  She used to be almost 60 pounds underweight and most of her weight gain has been at home and not in a treatment center.  Having said that, she no longer purges.  She eats freely and will take extras.  She works on a farm but no longer compulsively exercises.  She still limits some foods but overall it is so much better than it was.  We're even talking about the possibility of her moving out to a place where she will have eyes on her but will be responsible for meals and snacks herself.  Even a year ago I'd have laughed if someone had asked me if she would ever move out.  You know quite a bit of our story and you know I've learned the hard way that recovery looks different to every person.  I'd love to say she has a completely normal relationship with food but she doesn't and never will I don't think.  She will never be able to eat without giving it more thought than most people.  I don't care to be honest.  She is out there living and happy and able to keep herself healthy.

I could have kept her home with me and tried to push her weight higher but instead I went for tackling every symptom as much as possible and doing a lot of risk limiting.  If she never gains anymore weight and continues like she is, it is still a win.  She is ten pounds heavier than she is comfortable with and when she found out, she was sad and uncomfortable for a day but has done nothing to try to lose it.  She knows she needs it and the key to her success was finding something that meant more to her than numbers and being sick.  It was finding the things that enriched her life and focusing her attention on those while supporting her to get as healthy as possible at the same time.

There is always hope.  You have listed in the beginning of this all the things that have improved.  Those are huge wins in my opinion.  Help her find something that truly matters to her while keeping her as healthy as possible doing it.  If I only focused on weight restoration, we'd still be in the depth of h*ll.  Recovery is so much more than just a number and it can be so slow for some of our kids.
Torie

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Reply with quote  #8 
Francie, there is ALWAYS hope.  Always.

I have heard of women with long, sad ED stories who recover in the end.  Brain maturation during the twenties can be really helpful, too.

Hang in there.  Sorry the treatment center didn't get any weight on your d, but that might be a reflection on her team rather than on her ability to kick this beast. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Francie

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Reply with quote  #9 
Hi Everyone,
Thank you for the replies - you are keeping me going, keeping my thoughts clear so I can move forward with what we're facing. [smile]

Mjkz, your honesty in relating your experience is comforting. Your daughter has made a lot of progress and is happy with her life. It must have been difficult to remain steadfast in the face of her illness but you have been able to do this. It gives me hope. It makes me realize that it's not necessary to focus on a number so much as the whole picture: eating, honesty, meeting responsibilities, owning up to slips, etc.

 Torie, I'm not sure why the treatment center is okay with the lack of weight gain except that managing the b/p (and a misuse of laxatives that caused a weight loss mid-program) was difficult for everyone to manage. There were/are a lot of symptoms to manage at once. At the same time, I would say that the treatment facility, her T, have been outstanding because there were many, many days over these past 12 weeks that my d wanted to quit, didn't show up, and had a bad attitude. There were many times I was ready to give up and remove my d in favor of Residential care but the T kept us engaged, gave practical solutions as to how to keep our d safe in the face of scary symptom use. I now take my d right to the ER when she b/p's, no questions asked, and I'll keep doing it as part of our recovery routine.

My d really wants to return to college. I do not agree that insurance is pushing for the step down even though weight was not gained but we are all aware of it and as part of the family meeting we let it be known that we want her to be healthy enough to get through an entire semester at college - she'll need energy and she'll need to be able to make her ED less of a part of her life and daily struggle in order to do that. So, a requirement of weight gain for her to be able to move forward with her plans to return to college in the fall makes sense and can encourage recovery and weight gain.

 In the face of her stepdown my d has signed up for online college courses over the summer. My h and I are skeptical about a return to college - we have lost thousands of dollars because she's withdrawn. She will have to continue to show progress, and part of that will be to gain weight consistently (can be a very slow 2 lbs a month as FoodSupportAUS suggests above). 

Thanks, All! XO

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Francie

mjkz

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Reply with quote  #10 
Quote:
I do not agree that insurance is pushing for the step down even though weight was not gained but we are all aware of it and as part of the family meeting we let it be known that we want her to be healthy enough to get through an entire semester at college - she'll need energy and she'll need to be able to make her ED less of a part of her life and daily struggle in order to do that. So, a requirement of weight gain for her to be able to move forward with her plans to return to college in the fall makes sense and can encourage recovery and weight gain.


Francie, it is easy for me to see why the treatment center did what it did in the face of so many symptoms.  They took care of what was going to kill her the quickest-the purging, the laxative abuse, etc.  Insurance wouldn't ever cover my daughter to full weight restoration because she was considered chronic as would your daughter in their eyes I suspect.  They look at risk reduction, not full weight restoration in someone who comes in like your daughter.  She has improved in so many areas that they probably feel she has improved as much as she can where she is right now.  That's not to say that weight gain isn't important but it does make some sense to step her down and see how she does.

Again, I'm referring to people who are considered chronic-who have been eating disordered for a long time and any forward motion is usually slow.  If this was her first, second or even third time inpatient, I would heartily disagree with the insurance company but it could be years before she is fully weight restored if ever.  I fought this battle often with insurance companies and treatment centers.  Once my daughter was considered an adult, she was very vocal about not being willing to gain weight and only work on risk reduction things like stopping purging.  The treatment centers and insurance looked at her long history and generally unsuccessful hospital stays in the past and agreed with her.
Kali

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Reply with quote  #11 
Hi Francie,

Just wanted to send you hope also. Your daughter's illness is complicated, and sometimes the progress can be slow but what you are describing IS progress. Tackling the purging and the laxatives are a very important part of the symptoms to alleviate and it would appear that the treatment center has worked on that. And your daughter is also voicing hopes for her future; in that she wants to be able to return to college. 

But you are not done yet even though I know you are so so tired. I know that it is not only about the weight, especially with our young adult children, but it is a very important piece of the puzzle. Although I do understand why the treatment center is asking your daughter, at 20, to learn to prepare her own food, and that has also been something we have focused on with our daughter, I also think that normal eating in families is for people to come together at mealtimes and eat the same thing and to take appropriately sized portions and that is what we do when we are together. She will need to feed herself if she goes back to college and it is without a doubt an important skill, but it would seem she is not feeding herself enough if her weight is not where it should be. There are tons of really good tasting and nutrient rich vegetarian options which can help bring her weight up. (We are vegetarian) At one point I set myself a low goal of a weight gain for my daughter of 3lbs a month. (At the time she was not in medical danger but was resistant and needed to bump it up in my opinion, much like you are describing your daughter needing more weight.) The weight gain went slowly but she seemed better able to tolerate it. So in two months I got her up 6lbs, which doesn't seem like that much, but it made a world of difference in her state.

We also lost some money when we brought our d home from college. It was bitter in a sense, since i work so hard and had saved for so long to be able to send her off. But I could have lost my daughter (she was suicidal) instead of that $7000, which was a lot of money for us, but I came to terms about losing the money since I still have my daughter and she is alive and living a life that she likes right now. If she goes back, you could get tuition insurance, which covers withdrawals. I had some the first semester my d. went back after treatment, and luckily did not need to use it, but it was there just in case.

Sending big virtual hugs,

Kali

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Francie

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Reply with quote  #12 
Hi Everyone,
I thank you all for your insight. It seems scary to face the stepdown to IOP next week. Insurance did give her another 7 days of PHP after we pushed back. Our d has an outside T as well who thinks we should give the step down a chance, to give our D a little room to grow and to test herself. She thinks our D is doing great and now is a good time to step down.

We have a family meeting with the Walden T today. I will ask for help for the nutrition part so we can keep recovery moving forward. Notice I will say 'nutrition', not weight. I like Kali's suggestion above that familys eat together so perhaps I can start making vegetarian entrees a few times a week that we can all share as a family, and bump them up calorie-wise. 

Our d did lose 1 lb over the weekend (while at home [frown]) so something is going on....

Again, I don't want to lose sight of how wonderful the treatment team has been. And I know they are there if we need them. I think now it is up to my D to step up to the challenge. Thank you! XO

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Francie

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