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HateEDwithApassion

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Reply with quote  #1 
Hi all,
Just getting some ducks in a row in case we need them, and have been reading lots on the UCSD weeklong program and now the Ohio-based program Center for Balanced Living weeklong program.

1. Could you share your experience/thoughts on each program for those who have experienced each? I know the Cali program is excellent. Experiences as effective in Ohio?
2. If you had a YA over 18, how did you persuade them to go? Motivators? Consequences? Leverage used? Did any have kids who none of those things worked and you had to get more creative?
3. If you had a kid/YA who resisted going and is not at all motivated, was the program still worthwhile once you got there? How did the child engage while there if that was the case?
4. If the ED is just one of many other co-morbids, especially depression, some SA, previous SH that's being dealt with in DBT therapy, is the weeklong program still appropriate?

My D has relapsed. Currently down 6 lbs from her best recovery weight, and gaining it back slowly. Stubborn and resisting her ED dietician, which is a first.  Within her historic growth curve, but obviously lost weight plus ED behaviors = big bump in the road.

I can't get her higher than her historic growth curve - she's at the bottom of 50%, which is where she's been her whole life pre ED. Fighting me now as a YA. So.... looking at the possibility of taking this step if she won't gain more on her own, but realizing that the ED is just one mental health issue among several. Thoughts to my questions above?
Thank you!!

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
Foodsupport_AUS

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Reply with quote  #2 
Having done neither, but at the same time researched going to both, I think that where you go in part depends on where your daughter is sitting with respect to trying to recover and managing her own independence. 

UCSD is very much based on FBT princples whereas CBL is based on using family and supports for collaborative care to help someone who is older and more independent, or more motivated to recover with ED. Early on we would have gone to UCSD, and I did seriously think about it. What held me back was the lack of support when we got back. 

More recently with my now 20 year old who is in a very different space to nearly 7 years ago, I have contemplated CBL for her. She is now at a point where she can be worked with in a collaborative manner and is willing to do so. D is reluctant to work with others with ED, so at present it is on the back burner. She is however continuing to work at things using me for support. 

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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.
mnmomUSA

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Reply with quote  #3 
My daughter was 15 when we went to UCSD.  I cannot help with the questions about young adults, but can say that my daughter was not at all motivated to go (understatement of the decade!), but once she was there, saw how things worked, she really engaged in a way that I had not expected.  I think the same was true of nearly every participant that was there that week, the oldest of whom was 17.  It was fascinating to watch.  They make it a very welcoming, reassuring environment for the sufferers, as well as the parents, which I think allows everyone to open up more than they might have expected.  They are very expert at dealing with "less than cooperative" patients there, so it wouldn't worry me at all about reluctance to participate so long as you can physically get her to La Jolla.

I've heard good things about CBL from those here who went.  Most participants are, of course, older than 18, but I think most at UCSD are younger than 18.  If I were you, I'd be deciding between them based on the emotional maturity level of your daughter.  If she skews younger, I'd pick UCSD.  If older, CBL.  Of course, proximity and ease of travel to the program might also be a factor.  

Thinking out loud here a bit, and also with a bit of an eye to the future.  My daughter is fast closing in on 18.  I believe I still hold substantial leverage over her even with that being true.  I'd use every ounce of it if I had to to get her treatment.  For example, we have a substantial college savings plan to be used to educate her.  She knows already that access to those funds depends on her continued cooperation with us around her eating disorder (even though she is solid recovery at this point, I'm not naive enough to believe that she will never relapse).  If I thought she needed care, and refused to get it, I'd pull those funds.  I'd pull support for her phone, her car, etc.  All of it.  She is still heavily financially dependent on us. We are already discussing what her "contract" with us will look like when she goes to college.  It will include her agreement to semi-monthly "eyes on" interaction, with weighing as I deem appropriate or necessary (we rarely weigh anymore....I can tell by looking at her and living with her whether she is slipping....any hint of slipping and she's back on the scale, but "the number" is no longer the focus).    It will include semi-annual check ins with her current treatment team (so long as she maintains her recovery of course).  Is she happy about that?  Nope, but she goes along with it because she knows she needs to for my continued cooperation in supporting her once she turns 18.   Anyway, if I were you, I'd make a list of every leverage point you have, and figure out which order you want to pull them out and use them in.   

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D, age 17, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)
AUSSIEedfamily

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Reply with quote  #4 
Dear HateEDwithApassion,

There is a lot of collaboration between both organisations & Walter Kaye of USCD has a lot of oversight of the CBL program.

I have attached a document sent to me by Dr Laura Hill of CBL which provides some research data of the both of the USCD & CBL programs as a combined effort.

For those who actually live in Ohio CBL provides additional support & treatment services other than their 5 day intensive program. They are restricted by state law in doing treatment services outside of Ohio.

In August last year I was priviliged to spend day 4 of their 5 day program as a visitor & partial participant

 
Attached Files
pdf Outcome data NEW FED TR Oct 28 2016.pdf (302.53 KB, 28 views)


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ED Dad

EDAction

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Reply with quote  #5 
The Center for Balanced Living's 5 day program is for patients age 16 and older.
Francie

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Reply with quote  #6 
Hi HateED,
I'm sorry for what's been happening. You ask:

2. If you had a YA over 18, how did you persuade them to go? Motivators? Consequences? Leverage used? Did any have kids who none of those things worked and you had to get more creative?

Is college a motivator? If you refuse to pay for school unless she takes care of this illness, would that be a motivator? Or the requirement that she go to treatment to remain in college?

Is there something else she really wants in life? An independent life? A trip? Can you use that as leverage? 

How are you two communicating? Okay? Good? If you tell her something like 'now is the ideal time to get rid of this once and for all', would that work? You and H together, emphatically, lovingly? And ask her whether the things that ED has done for her - are they what she wants for her life? 

It is always a crapshoot for me, whether what I say has the desired result or not. I am hopeful you can get your d to where she needs to be. Don't give up hope and faith. Hope and faith can be your two biggest assets in this awful fight. 

I am thinking of you. XO


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Francie

Francie

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Reply with quote  #7 
And HateED, something else just popped in to my head regarding motivating your D, and it relates to something my older brother once texted to me with regard to parenting our kids, which I have saved in my phone. It is:

"it's not what you say, it's how they feel is what they remember"

So, to interpret, the exact words you say to your D during your interaction with her to encourage her to go to treatment won't matter as much as the way your words make her feel. Does that make sense?

So go for a tone of confidence when you talk with your D about getting the treatment you want for her. Let her know that you are positively confident that this is what she needs (even if you don't feel that way).

And project in your words, tone, body language and eye contact any other emotions you think will help like empathy and love and trust. And say what you're going to say but keep the tone that way. Confidence above all. Good luck. You've got this, I know it. XO

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Francie

aboncosk

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Reply with quote  #8 
I posted this on a previous thread about UCSD...some of it may be irrelevant to your situation.  Hope it can answer any questions you may have about UCSD's IFT program.

-------------------------------

Our family attended the IFT program at UCSD one month ago (January 30-February 3, 2017).  I told our daughter as soon as I knew we found out we could go.  We had looked into this treatment program at the end of October when her weight reached 95 pounds.  She had previously gone through an eating disorder treatment program from January through March 2016 (started at 116 in December 2015, discharged at 111 in March of 2016).  This illness entered our family on 12/31/2015.  She had gone through PHP/IOP and upon discharge, she maintained weight for a very short time; then slowly lost one pound here another pound there.  Anyway, I found UCSD on Facebook at 2am one night when I couldn't sleep.  I had gone into d's room to check on her because her weight was so low I was worried about her heart and breathing (she has a low heart rate anyway because she is athletic/dancer).  Anyway, it didn't work out with insurance and we put UCSD on the back burner.  Her weight continued to decrease and I found a post on Facebook from an organization called ProjectHEAL.  A family had documented their journey with ED and UCSD in a weekly blog on ProjectHEAL's FB page.  I caught the first installment.  One thing that continually went through my head was - is one week enough?  Is it REALLY enough to make a difference and turn this thing around.  The mother of the girl responded to that question I posted and she ended up calling me on Thanksgiving.  She encouraged me to fill out a scholarship application for treatment.  I will spare the details but several days after Thanksgiving we were awarded a treatment grant from ProjectHEAL.  I was thrilled, overwhelmed and beyond blessed.  Which is why I told our daughter when I found out.  But we had discussed this treatment facility as an option a few weeks prior.  The reason I wanted to check it out was in part due to school.  When d was in PHP/IOP, she missed a full quarter of 10th grade.  It was very stressful to come back to school in mid-March.  The treatment program only allowed for one hour of schooling each day and the teacher's level of schooling (in our daughter's case) only taught at a 9th grade math level - our d was in 11th grade honors math :/  Her school gave her very little while she was in treatment which was difficult to come back to.  Lots to make up and to come back and slide right it where everyone left off.  It provoked much anxiety.  UCSD is one week.  It's one week away from school which as a Junior was still tough BUT it was the least disruptive to our family's lives/schedule.  She was adamantly opposed to returning to a PHP/IOP program.

In regard to school, our d's teachers only knew she was absent for medical reasons.  Her guidance counselor has been in the loop since day one.  This was helpful because the guidance counselor could address teachers, help to get any assignments (this time with UCSD since we knew well in advance we were able to get some school work before we went), and be the go-between with the teachers  and attendance office.  Her absence was coded as "medical" for UCSD and therefore doesn't "count" against her and some school work was excused without having to make it up.  I will say if you haven't; you may consider approaching your daughter's guidance counselor at school.  Lunch will be an issue for you when you return.  Our daughter has lunch monitored in the nurse's office (the school nurse knows of her situation as well).  With the contract at UCSD, all meals/snacks must be monitored by an adult.  Of course, school presents challenges.  Our d is very low weight and if we wanted this method to work, we knew she'd have to return to lunches in the nurses office.  Not the greatest at 16 (almost 17 years old) but she's accepted it.  You will learn with the contract that it can be revised every 2-4 weeks.  We said once she shows she's making progress, we can incorporate maybe 1-2 lunches a week back in the cafeteria with her friends.  We are there yet but getting close. 

As for the logistics of the program, we stayed in a house about 15 minutes away from the Children's Hospital.  Traffic wasn't bad in the morning and took us at most 20 minutes each day.  We chose a house for several reasons:  one, it was less expensive than the Residence Inn in La Jolla, two, it allowed us to cook breakfast and dinner (eating out is a HUGE issue for our daughter), three, everyone had their own bed - which was important for a good night's sleep.  Our son was with us too (he's 12) and instead of the two sharing a bed and going through the LONG days at treatment - it was helpful that all could retreat to their own space.  I looked on VRBO, HomeAway and ended up finding the little house on La Jolla Vacation Rentals.com (I think that was what it was called).  We stayed in Ocean Beach which was an interesting/eclectic little area.  There's a dog beach about 10 minutes away and a cute little area with shops/dining in the general area of the dog beach.  The airport was also only like 10 minutes away.  Overall, it was a good location - close to airport, downtown. 

We flew in on the Saturday before treatment started so we'd have part of the weekend to visit San Diego and flew out the Saturday after treatment (early AM flight - wished we'd have left later to do more site seeing things).  Samira at UCSD said many people fly in the Sunday before and/or fly out the Friday afternoon of treatment or the following day. 

We didn't deal with any behavioral issues from our daughter and our son was thrilled to miss a week of school (we also told his guidance counselor our reasons for him missing to medically excuse his absence.  UCSD will provide you a letter for the school - just ask Samira about it).  Since we knew about it two months prior, we just kind of let things be with the anorexia.  Meaning, we didn't make any changes to what she was eating or how she was eating because we knew that changes would come with UCSD.  The treatment program she went through gave us a meal plan and a booklet that provided sort of a "diabetic exchange" method - 1/2 cup of veggies equals one serving type of thing.  Not a fan.  Basically we were arming our anorexic with the knowledge of counting calories with this method and what 16 year old measures out one cup of Rice Krispies and one cup of milk everyday (was not happy with the treatment program she went through - it got weight on her but barely had parental involvement and many things she wanted to talk about she couldn't because they were triggers for other patients...then how do you get better??).  Going into our week of IFT, know that it will be a HARD week.  Harder for some than others.  There are between 4-6 other families there with you.  You will form a bond with those people and it truly does help to see that others struggle with this too.  I will not lie - it can be heartbreaking at times.  They make your child eat.  As strange as that sounds, think about it.  They've been avoiding eating and now this Maudsley Method tells you to feed them what you think is an appropriate amount of food...it was terrifying for parents too!  But, they want you to push the ED, to challenge it.  The first day, they provide you with snacks and lunch.  I gave my daughter a HUGE sandwich.  The staff even said when we met with them later that day - that was a BIG sandwich.  But she ate it and she ate all of it.  It's pushing them outside of their comfort zone, away from their "safe" foods.  Our daughter was one of few that weren't currently in a PHP program.  Several were going through treatment at UCSD's PHP program.  So, for us, some things were different than others.  Meaning; our child has never flat out refused to eat.  She had been completing 100% of her meals - she just wasn't eating enough to help her gain weight.  She is a dancer and she had to stop dance in November because there just weren't enough calories to compensate for what she was burning off.  So, the first day can be a bit tough.  You will give your child a morning snack, lunch and an afternoon snack.  YOU prepare it.  This method as simplistic as it sounds works and it takes the anxiety away from your child.  They don't have a voice in what they are eating.  Part of what you learn is there is no negotiating.  That can be tough - we saw it from a few others in treatment.  You have to trust that YOU know what is best for your daughter and be willing to sit with your child for their meals.  The rest of the week you bring in lunch and snacks.  They will weigh her on the first day, Wednesday and Friday.  You should see some progress during the week.  When you aren't focused on meals and snacks, you will be in groups.  Sometimes, it's the teens in one room and parents in another.  Siblings go with the teens.  Other times, it's a full group together.  You will learn the science behind why eating disorders do what they do.  For us, this was important to hear.  Dr. Kaye will come in to give a talk about the research studies and what they have found.  It helps to hear the science behind this because it reaffirms that this is not a choice, that there are biological reasons for this.  Mid week you will start working on the contract.  Someone had said if you can - bring a laptop.  They also have some there for you to work on as well.  They give you the framework of what your individual contract will look like.  Your child will identify rewards and consequences in a group with the teens.  You and your husband will take that information and incorporate it into your own personal family contract.  You will leave with a contract that works for YOUR family.  Again, seems so simple.  Rewards, consequences.  I am here to tell you that this is working for our family.  Our daughter said she felt "stuck" and wasn't making progress. This program gave her the push to get better.  Now, we've had a few rough meals/snacks.  The ED thoughts can be fierce at those times.  But you will find a way to love and support her through this.  For me, the BIGGEST positive was that my husband and I are now on the same page.  I've spent almost the last full year doing the lion's share of recovery alone.  He's very black/white.  ED is VERY grey. It helped him learn about the why's of the illness. We did some group exercises that were pretty prolific in terms of understanding what our kids go through (one was called the Gauntlet - our daughter was the participant...I cried).  This illness has wreaked havoc on our family life, caused stress and tension in my marriage, issues with our younger son but this week brought us together.  The IFT week can be hard but going home and putting this to work is HARDER.  But, it's working.  We are on week four of our contract.  Our daughter is gaining.  We are working towards weight restoration.  We learned that you cannot have recovery until the physical aspects are addressed; then you can really work on the mental aspects of ED. As they physically recover, their brain resumes growth (we learned that it actually shrinks due to malnutrition) and you will see glimpses of your child's personality returning.  That's not to say you won't have those "days" where the ED is fighting for your child.  But you will fight back - harder. 

The only thing that we wish could've been done differently was there were a few times we started to cover a particular topic of discussion and because of questions or whatever we never got farther than number one on the list.  But, UCSD gives you a binder of information.  You will have what seems like downtime as you eat/snack with your child so the actual time you are "learning" isn't truly 9am-3pm each day.  However, these people know what they are doing.  This is their niche.  They understand eating disorders.  Not saying that other treatment centers don't - but it's scientifically proven that Maudsley works.  We also learned that most treatment programs get a patient to 85% of their ideal body weight and then discharge them.  Which goes back to you have to be physically restored in order for mental restoration.  It creates a vicious cycle.  If they aren't physically restored, they will relapse and return to treatment...perpetuating the problem.  Now, we've only been in this for four weeks with the Maudsley method.  Been at anorexia for a little over a year.  These last four weeks have been better than the rest of the time we've tried to help our child. 

Ok - that's my soapbox.  If you have any questions, you can email me: aboncosky@gmail.com
I will be happy to help however you can.  The good thing is you will have a week away with undevoted attention on helping your daughter on her way to recovery.  Your family can pull together.  I wish you safe travels and much success at UCSD. 

Blessings to you and your family <3
Kali

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Reply with quote  #9 
Hi HateED with a Passion

As a parent of a now 19 yo who was 17 when she entered treatment this is my two cents:

at 18 she was in a residential program with primarily 17 and up with even older people, up to their 40s.
then was in a program for PHP and IOP where there seemed to be mostly younger teens, 14-16 and just a couple around d.s age.

At 18, she was more comfortable in the program where the patients were older and she was among the youngest, and I think she got more out of it. I think that 18 is vastly different from a 15 year old with regards to insight about the illness. In addition if your d is 18 she is a young adult and hopefully will be able to manage on her own when she is ready, and I believe that there is a difference in the skills they were taught; at the program with the older age group it was clear that they were really trying to motivate them to really participate and take more ownership of their recovery and gain the insight necessary to move ahead, (while still totally involving the family in therapy and care) and with the younger age group it was really primarily the family that is in charge and control is taken away from the teen. 

So I guess it depends what you think your d. would benefit most from. And let me say that d. met some women in treatment who were older and had had this illness for many years and I think it has steeled her determination to not have the sad life that anorexia can offer her. On the other hand she formed some close and caring relationships with those women, who I also met and spoke with (and I liked most of them and sincerely hope that they are doing well) since I was up there a lot, and that I saw as a positive thing.

Kali

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