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fight4mygirl

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Reply with quote  #1 
I am starting a new thread in the hopes of finding everyone who has done this program.  We just bit the bullet and signed our family up for the week of March 6-10th (after finding out about it days ago).  That is only 10 days away!!!  It will be tough (my husband is missing his huge global meeting) but we both believe it is the right thing to do to reset our family and get back on track. I am having panic attacks though about telling our d.  She actually made weight yesterday at her appointment (thanks to 4 days of her packing in the food out of fear of not making weight) so this will come as a HUGE surprise.  She will feel completely blindsided and betrayed. Not to mention my husband has to fly soon after we tell her so I want to be as prepared as possible.  My questions to those of you who have done it are:
1. How/when did you tell your child you were going?
2. What was their reaction?
3. were there any severe behavioral ramifications once they found out? (I am fearful of my d's reaction) and if so what did you do?
4. How did your other children react when you told them?
5. Did you tell the school about the program (our school does not know about our ED yet)
6. Was there anything you wish the program had/had not done better?

any information you can share would be so helpful. thank you! 


mnmomUSA

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Reply with quote  #2 
We told her as soon as we made the decision to go.  We presented it as a fait accompli....we were going.  Period.  She was, of course, predictably NOT HAPPY.  She said things like "you can't make me go" and "it's child abuse" to force her to go.  I remained very calm and handed her the phone to call child protective services.  Call, I said.  If they agree, then we won't make you go.  Of course, she never called.  She knew she wasn't winning that one.  Oddly, she got MORE compliant in the intervening time periods, in a last desperate attempt to "change our minds."  It was actually a period of calm in our house.

Now, I was very concerned about how she would behave at the airport and whether she would actually get on the plane.  We allowed PLENTY of time in case the demon came out.  She was actually quite well behaved.  Again, we were firm, but compassionate, that she WAS going and that we most definitely could MAKE her go, so it would be easier if she just went along.  And, she did.

We went over the summer, so there was nothing to tell the school.  However, she missed so much school for appointments, etc in the years before we went, that I DID have the conversation with the counseling office about her condition.  We got zero pushback for any of her missed classes after we had that meeting.  

I would present it to the other children as a chance to help their sister.  It really DOES help.  Some of the stuff is pretty intense....not gonna lie about that, but it was overall a great experience.  We had children (siblings) as young as 7 or 8 during our week.  That particular family had an even younger child that they opted to find child care for instead.  

Have you figured out where you will stay?  The biggest hassle for us was having to bring breakfast and lunch (and snacks if your child won't eat from what they have for snacks) every day (well, not the first day since it starts after breakfast and they provide lunch for the first day).  Bringing along a soft sided cooler would be very helpful, as well as easily packed disposable flatware, dishes, etc....if they fit in your luggage.   We rented a house and shopped at Costco the day before the program started (we flew in on Sat, had a nice beach day/shopping day on Sunday, and then program started Monday) and laid in breakfast supplies for the week (bagels, cream cheese, fruit, milk, etc) and then brought as we needed for each day.  We stored a gallon of whole milk in their refrigerator.  For lunch after the first day, we bought sandwiches and chips from the small deli on the lower level....worked out great for us, but obviously a bit more expensive than providing your own.  For dinner, at our rental house, we did heat and serve things from Costco---lasagne, rotisserie chicken, etc.  Restaurants were just too hard for her every night.  



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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  #3 
Dear mnmomUSA,

The USCD program is aligned with the Centre For Balanced Living's (CBL) NEW FED intensive 5 day program Walter Kaye is one of the supervisors of the CBL program. The research data they are collecting shows that most of those who attend the program & do the follow up stuff make positive changes. I was fortunate to spend a day at CBL on the 4th day of their 5 day program & it was interesting to see/hear the clients talk about the program & the way they perceived their illness after the 4 days compared to when they how they perceived it at the start of the first day.

Attached is the preliminary findings report.

 
Attached Files
pdf Outcome data NEW FED TR Oct 28 2016-1.pdf (285.12 KB, 53 views)


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iHateED

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Reply with quote  #4 
Hi,

We attended the week-long program in February of 2014, so three years ago!  Our D was 16 at the time, and a junior in HS.  In August of 2013 we realized the problem was RAN (because our older D had an ED three years prior).  By September, our D quickly deteriorated so we checked her in to our local ER as not medically stable.  She stayed 10 days and then did 2 months of a PHP and then IOP.   After discharge in December and things given back to her even though she still had 10 pounds to go, she started going downhill again, but this time it was really hard to gain back control since the doctors gave the green light for certain things.  By February 2014, she was back to such a low weight and with no help from the program, we decided to give the UCSD program a try.  It was only a week and if it didn't work, we would have considered residential after that, but thought starting with the week was worth it.   AND IT WAS WORTH IT!   Here is a bit of our experience for you -  It was only me, my H and D.  Our older D was in college and we didn't want to pull her out. 

Getting her on the plane -- just said you will come with us or we will call for a police escort.  She wouldn't eat anything that day or on the plane.  When we landed, we made her eat in the airport or else we were going to take her straight to Rady's Children's Hospital and then she probably would have missed the program. 

We stayed at the Residence Inn in La Jolla which had a full breakfast buffet.  Each morning I would take some to-go containers to the buffet and make our breakfast to bring with us to program.  There is a stove top and microwave at program for you to use, and a refrigerator for items you want to keep all week such as drinks and milk.   I also took some extra items for the snacks for each day.  I remember there being a blender for you to use so if you haven't started doing smoothies, this would be a great place to introduce them! 

The most helpful part of our experience was getting my H and I to reframe our thinking and our wording of how we handled our D.   On the first day, when D didn't eat her lunch, we said, that's it, now we are not going to explore the area after program, we will just go back to the hotel.  The next snack came and D didn't eat again.  Privately, one of the great therapists told us that because we removed her incentive to eat completely, she had no reason to eat the whole rest of the day.   She had us reframe our wording into a positive outcome -- so we told our D that for every meal and snack she completed at program, she would earn half an hour of free time after program for her to choose what we would do.  We had 2 meals and 2 snacks each day at program so that gave our D two hours for her to choose what we did if she complied with all 4.   This really worked for us and D. 

The contract is the most valuable tool you will leave with so prepare a little bit ahead of time of what your family situation requires and what you KNOW you will be able to follow through with.  You cannot make it idle threats if you are not going to follow through.   My H did bring his laptop which was a big help, so bring one if you can.   Our contract was 7 pages long and covered every loophole we could think of at the time!  Our D was (and still is) a master negotiator and could wear you down and make you think you said something that you didn't say - but you believed her!   So our contract was super specific.  They gave us many samples to choose from and then you can customize one to fit your family.   If you would like to see our contract, please let me know and I can email it to you.

Good luck to you and your family.  There is lots to see and do in the area.  Mostly our D just wanted to walk on one of the many beaches after program watching the beautiful sunsets so that's mainly what we did each night.  
HateEDwithApassion

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Reply with quote  #5 
Hi,
I would be really interested to get a copy of your contract, too, if you don't mind sharing it. Not sure the best way, but 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.
sk8r31

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Reply with quote  #6 
We attended the UCSD 5 Day Intensive program in June 2011.  Once h & I made the decision to go, we had roughly two weeks before leaving...so like you, it was a whirlwind to get arrangements made etc.

We told d right away after making the plans.  It was just following the end of the school year, so there was no need to inform the school; however, in your shoes, I would be talking to the principal, counselor & teachers.  They should be in the loop, particularly since your d will still have a few months of school to complete after the program.

Our d was NOT HAPPY about going, 17 years old at the time, and our 'game plan' was to offer to take her on a college visit prior to the program starting, and then another visit a couple of months afterwards on completion of program.  Since she was interested in a few CA schools, that was enough of a 'carrot' to get her to go.  I flew out with her a few days early, & h joined us for the program.  Our son was in university, and doing a summer course, so he came only for the weekend following the program.  Interestingly, we had a lovely family weekend together....after such hellish times during the previous 3 years of ED life.

We rented a small house, about a 10 min ride away from the center, and cooked all our own meals, & brought stuff for lunches to the program daily.  It was just too difficult to manage meals in restaurants.

Bringing a laptop would be a great thing; you do need to write up a contract in the evenings, so it is very useful to have along.

A couple of other things to note....we ditched our 'team' at home just before doing the UCSD program, and connected with another FBT 90 min away.  We met once before leaving for CA, but T was in contact with program therapists both before & after the program, so we hit the ground running on our return, and it was tremendously helpful to have good professional support to follow up.  Not sure if we would have had as positive an outcome without good support on the homefront afterwards.

We started out with twice weekly sessions throughout the summer, and then gradually lengthened the time in between throughout that following year.  We 'graduated' from that care a little less than a year following our time in CA.

Expect to be mentally exhausted at the end of every day...and give yourselves some space to just decompress.  I thought we might enjoy the area sights each day after the program, La Jolla is gorgeous, but we were all really just too tired.  Our weekend after the program let us enjoy the area somewhat, and that was a lovely break, & a family reconnect time for us.

Really glad to hear that you will be heading off soon for this program.  It was certainly a game changer for our d and our family.  Wishing you & your family a productive week!

Warmly,
sk8r31



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iHateED

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Reply with quote  #7 
To Hate ED with a passion -- I just sent you an email but I cannot attach a file to it through this system.  After you respond, I think I will be able to send it through AOL.  Let me know if you receive it.

fight4mygirl

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Reply with quote  #8 
Well we told our d and our 2 sons on friday. As expected she flipped out, tried to leave the house and when I tried to pull he back in she screamed that i was physically abusing her.  We got her to calm down after which she informed us that she would not longer talk to us especially at the program, that we were wasting everyones time and money and it was f'd up that we are taking her out of school.  She has since refused to do any of the intake labs or phone interviews.  She has been trying to stay at friends house's, been drinking and partying until all hours of the night.  I knew she would react poorly but this is heartbreaking. This is not the daughter I know.  Just when i think i have the ED figured out her behavior escalates and I cannot tell what is the ED and what is her.  Sometimes I feel like she hates us with every cell in her body.  I try and think it is the ED talking but the majority of her comments are about how she cannot stand to be with us, hates being in our house and thinks we do not care about her one bit.  Literally my every waking moment is about her and trying to help and love her and she thinks I am the most uncaring person alive.  I am hopeful that this is just the ED talking but sometimes I cannot sleep at night worried that she will never understand how much we love her.  My heart is broken.  I am still sure that our UCSD program will definitely help my h and I  but I am beginning to doubt how much my daughter will get out of it.  Sorry to vent...it has just been a tough few days. [frown]
Torie

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Reply with quote  #9 
Quote:
Originally Posted by fight4mygirl
Sometimes I feel like she hates us with every cell in her body.  I try and think it is the ED talking but the majority of her comments are about how she cannot stand to be with us, hates being in our house and thinks we do not care about her one bit.  Literally my every waking moment is about her and trying to help and love her and she thinks I am the most uncaring person alive.  I am hopeful that this is just the ED talking


That IS Ed talking.  

Your real d is in there, and she loves you.  Ed, on the other hand, recognizes you as the enemy, which is probably a good sign.

Hang in there.  You're doing the right thing, and you will get your real d back. xx

-Torie

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

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Reply with quote  #10 
Dear fight4mygirl,

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

aboncosk

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Reply with quote  #11 
Also, if you haven't read Eating with Your Anorexic by Laura Collins, I strongly encourage it.  She took ED into her own hands and details her journey with her daughter's recovery and the Maudsley method. 
iHateED

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Reply with quote  #12 
aboncosk, GREAT POST on UCSD.  This needs to be pinned for anyone searching about the program.  You have explained it all so well.  Our family attended 3 years ago and it was then very much the same as you describe -- evidence based treatment that works!

Fight4mygirl -- I know how hard it can be to hear your D say those things about you and to really sound like she means them -- but she doesn't -- and you will get your D back.  She also probably won't remember much of the hateful things she is saying to you now.   We went through it all too, the crying, the anger, the panic attacks, the screaming she hates us and will never love us again.  But I promise you it will get better once her brain has recovered.  The first and most important step is food.   Hang in there! 
aboncosk

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Reply with quote  #13 
Fight4mygirl - Best wishes to you and your family this week.  Please share your experience when you get a chance.  Praying that you have success like so many other families have had at UCSD.  Thinking of you <3
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Reply with quote  #14 
Hi fight4mygirl,  Thinking about you today and hoping you had some success at your week at the UCSD family intensive program.  How are things going?
fight4mygirl

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Reply with quote  #15 
Hi all!  I am so sorry for my tardy response.  I know everyone was rooting for us and I am so thankful for all the positive thoughts.  Life has been a nightmare since we got back from our week at the UCSD Intensive Family Treatment (IFT) week.  However it is now a nightmare with a purpose and I feel so much better (at least intellectually, emotionally I am shattered).  Our week program was a Godsend and a well needed reset button.  My daughter reluctantly got on the plane (she had a sleepover the night before and I honestly wasn't sure she was going to come back home).  My boys were very nervous and upset at both the unknown and having to miss a week of all their school/activities.  My husband was missing his biggest meeting of the year, his global meeting, but did his best to hide his stress.  I think after so many months of traveling and not being around to help he was excited to be doing something tangible and productive to help our d.  We showed up Monday and were greeted by Stefanie and Melissa and met the other three families.  The week was a whirlwind of neurobiology lectures, Dialectic Behavioral therapy lessons, teen group therapy, parent therapy, goal setting and emotion sharing.  It was amazing how much everyone shared...it reminded me of the "stranger on an airplane" phenomenon. I think everyone felt they weren't going to see each other again so it was ok to bare all.  Everyone was in tears at one point, even both my boys.  They did so many activities to really help siblings, and parents, understand what our children are going through as they battle their ED.  They made us all write with our non-dominant hand then had someone angrily coaching us how we were doing it wrong.  Then they explained that kids with an eating disorder have brains that are wired differently.  It isnt natural for them to sit down and eat like the rest of us and it only gets more stressful when we are angrily coaching them.  Another session had the teens say what the voices in their head were like when a plate of food was put in from of them and then rate them.  For example a voice could be anxiety 8/10, or fear 9/10.  then the rest of us had to act our those voices as the teen navigated an obstacle across the room.  My 11 year old cried.  When the therapist asked him why he said he had no idea that his sister had to go through that awful experience every meal and he wished he had known so he could be nicer.  Lets just say my heart broke a million times in 5 days.  Everything culminated into our very long contract which we wrote while having our hands held by the therapists...they answered any and all questions and Stefanie ended up sitting down with us and helping us present ours to our d because our d was by far the most difficult of the group behaviorally (lets just say that while everyone else commented on how they were glad their family was there to learn and help them our d pretty much told everyone she was pissed at us and hated us for ruining her life...if she could have sat there all week chucking us the finger I think she would have).  There are so many positives about this week but like one person said it is one of the hardest weeks of your life emotionally.  Our d ran away from our rental the first night because  we told her she was going to have to eat dairy again..thank God she eventually called her Therapist or we were going to have to call the police. We were devastated but Stefanie said, "look at it this way, you have definitely poked the bear which means you have threatened the ED"....YAY?  We also got to hear our daughter express some of her feelings about everything which was good because she rarely talks to us, however what we heard was a girl who has far less insight than we could have imagined.  She basically thinks everything is still all our ridiculous scheme to ruin her life, not, like the other girls admitted, the Eds fault. Good insight but heartbreaking.  The therapist predict she will be one of those kids whose behavior might not change for awhile after WR...ugh.  It was unbelievable to sit there with her discussing her contract and while the therapist is basically telling her that we gave  her the maximum allowable concessions the recommend our d is cursing us up and down saying we are the worst parents she has ever met, that we f'd up her life and we f'd up her and she will NEVER be able to trust anyone again.  Yep, we definitely poked the bear!  So since we have been back she has gone off the rails with her bad behavior but at least now I have the contract and i can say "there is no arguing about this meal, you argue again and you don't go to school today".  Very helpful in making me stand my ground. Her abuse has been relentless, 24/7, comments, texts you name it, especially when it comes to dairy but despite it crushing me (I learned at UCSD that I am very much on the Emotional end of the wise mind spectrum) I feel it gives me strength to stand up to the ED.  It has become painfully clear that our daughter is much more entrenched than we thought (you guys called it!).  So we have gained 2 pounds in two weeks at 3000 kcal/day.  She is already panicking about when she will be "done" but now it is clear to her entire team that we have further to go than we expected to get her weight restored...she will need it for her mental state.  So this war weary mom has headed to the front lines again, desperately trying to shield herself from the onslaught of abuse but well armed with more knowledge and, of course, lots of prayers...I will keep you posted! xoxo 
iHateED

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Reply with quote  #16 
Yes I remember all too well, the weeks following the program were some of the hardest!  Her ED is testing you and pushing the limits, trying to get you to back down!  Do your best to follow the contract for every snack and meal.  Do not worry that your D has no insight at this point, many sufferers don't have it until well into recovery.  My D knew I was emotional too and would push every button, call me every name in the book, always trying to get me upset because she knew I would be less able to have the strength to fight the ED if I was upset.  I cried everyday in the shower and it really helped getting the sadness out before the day started.   Build on your momentum from USCD.  Make sure to add milkshakes or smoothies into her daily routine (I swear they are the reason my D is happy and healthy and in college today!).  Add as many fat calories into her diet as possible.  Fats are the key to brain healing!  My D thought her daily smoothie was a yogurt, some juice and some frozen fruit.  She did not know that there was canola oil and HWC in there too!   You can do it! 
therese534

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Reply with quote  #17 
Hi iHateED,

I just read your post about UCSD and am seriously considering it for my almost 18 year old daughter who has ARFID and is seriously underweight (BMI 17). SHE has no ED behaviors or thinking, just can't eat enough since childhood, says she feels full after small amount of food and often nauseous. She's had GI issues since infancy. I'm not sure if UCSD program would be of help to us but I am desparate for something concrete to help me in what role I play in helping her. She is VERY oppositional and avoidant/denial about the whole problem. I am very interested in knowing exactly what your contract looked like. You had mentioned you were willing to share it with members. I would love to see it.
I don't know how different a contract might look for an 18 year old who is still living at home and entering senior year of high school. I'd appreciate any input of yours on the topic of a contract for 18 year olds.

I
deenl

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Reply with quote  #18 
Hi therese,

I remember one forum member who had a long thread about her son who had ARFID relating to high sensitivity around food. This is the thread http://www.aroundthedinnertable.org/post/new-here-13-yo-son-possible-arfid-7228819?pid=1295833030#gsc.tab=0

From what I understand there are a number of different ways someone can have an ARFID diagnosis so if your situation is different I would recommend using the search button on the top left of the screen. You could then read about some others with the same diagnosis and you might get some ideas.

I do know that you can ring UCSD and they will spend quite a long time listening to your story and telling you about their program and trying to see if there is a good fit.

Wishing you all the best,
D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
mjkz

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Reply with quote  #19 
Therese, check out this thread.  It is a family who dealt with ARFID and went to the UCSD and what they learned there.  Very well written and will probably answer all your questions and then some!!!

http://www.aroundthedinnertable.org/post/anorexia-vs-arfid-two-disorders-two-different-treatments-8449992?highlight=arfid&pid=1295162273#gsc.tab=0
aboncosk

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Reply with quote  #20 
Therese534,

I am more than happy to share our contract with you.  Feel free to email me (aboncosky@gmail.com) and we can talk.  Our daughter is 17 and going to be a Senior also.  She/We still follow our contract - it's not set in stone meaning it's a fluid document.  You make changes to it as you see progress or don't see progress.  UCSD and their staff give you the tools to make the contract work for YOUR family.  The framework is laid out and they you and your spouse (or whoever joins you at UCSD) work through the framework of the contract so that it applies to your situation.  Example, there is/was a section in the contract about self harm. This was something we felt we could take out as we've never experience it in our situation. 

Also, there was one member of our IFT group whose daughter's diagnosis was changed from Anorexia to ARFID.  I've contacted her to see if she can reply to this thread as she is on ATDT too.    (The thread that mjkz posted is from my contact - so hopefully that gives you some good information). 

As deenl states - call UCSD. They will listen and take the time to try and figure out what is the best solution to your situation.  For us, it was clear cut.  Our daughter was dissolving into nothing because of weight loss and anorexia.  She's always been compliant and ate food but it was never enough and it was limited to "safe foods".  We learned a lot at UCSD which has helped us to know how to care and treat our daughter.  She is now back on her growth curve, period has returned after 18 months and doing SO much better. 

Please feel free to email me and I will reach out with the contract details. 

Sending you hugs and healing thoughts -
Aimee



iHateED

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Reply with quote  #21 
Therese,

First, definitely call UCSD and talk to an intake coordinator about your situation.  If they don't feel the program will be a good fit for your situation, they may be able to provide you with some alternatives. 

I will send you an email to your email link in your bio.  When you respond back to me, then I can reply and attach the contract.  I have tried to attach a file to an email directly from this website and it doesn't seem to work.   Our D was a junior in HS when we attended. 

Have your tried giving your D a daily smoothie?  You can make a very high calorie/high fat smoothie without it being too overwhelming.   Have you tried the LSTYE (Life stops til you eat) method?  It seems impossible for a young adult but if you stick with it, it may be your best bet for getting more weight on your d. 

Fight4mygirl, hope all is going well in your household! 
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