In my previous post Discharge from UCSD, I compared the results before and after the treatment at UCSD in a chart. However, I didn't provide more details about how those results were achieved because I was busy with preparation for the vacation trip when I wrote that post. Today I summarized what I learned at UCSD and will be very happy if it is helpful to you. This post is a little bit lengthy and I apologize for that. To make the reading not boring, I added some pictures taken by D during the vacation.
UCSD emphasizes the importance of food variety. Before going to the treatment, D wanted to be a vegan. D and I had a lot of debating about this topic. No matter what evidence  presented to D that being vegan would not help her to recover, she could easily find other evidence to against me. To be honest, I really do not know anyone who has reached full recovery and is vegan. I have been living with D for 19 years. She had been really enjoying eating meat, fish and shrimp before she had eating disorder. How come she suddenly wanted to be a vegan? It is ED to make her to think about this way. Many AN patients want to use vegan as an excuse to avoid some particular food.
People with eating disorders, however, can use any of these diets as a mask for their ED, and they can get into difficult situations because of them. If you take on a diet for ethical or "health" reasons (lots of people take on gluten free ostensibly not to lose weight but for things like managing acne), it's easier to make excuses for not eating in public situations and harder for the people who care about you to say "no" to your reasons.
I reiterate and reiterate and reiterate that food is neither "good" or "bad". It does not have a moral identity. Food is the fuel on which our bodies run. Given verified medical conditions some of us may need hi-test, some may need diesel, most of us run just fine on regular. Fad diets come and go and most people who follow a fad diet do so for issues that have nothing to do with their physical health. 
The good news is that UCSD and us parents are on the same page. How to challenge D’s vegan thoughts is a really tough task. UCSD has done a very good job on this. Here are some examples about how to achieve this:
- UCSD has its own kitchen and it can prepare more than 70 different kinds of food. In other words, if the patient eats two meals a day at UCSD, there will be no duplicate food within one month! So far I have not seen any other ED treatment center can do that. The two ERC treatment centers we went to just buy food from Whole Food.
- During the first couple of days at UCSD, D always picked up the light meals which only include vegetables and tofu. The staff at UCSD observed this and override the choices she selected. For example, they suddenly replaced tofu with pork. D cried a lot because she couldn’t accept that. Finally, she ate it. After that, eating meat is not as difficult as before.
- UCSD requires the patients to bring their own food for the meals either once or twice a week. If they found the food variety is not good, they will ask the patients to fix that.
- UCSD takes the patients to different restaurants. Sometimes American restaurant, buffet, food court and even Starbucks. This will prepare the patients for living in the real life. I can image that D and I would have a fight if I ask her to go to those restaurants.
- UCSD also teaches the patients how to cook. D learned how to cook the eggs for the breakfast and some meals from the dietitian. Now she uses this skill for her morning and lunch meal when she is home.
- The patients are required to log the meals they ate. If the dietitians found the variety of the food is not enough, they will ask the patients to improve that.
- Before D always showed me the scientific evidence about recovery being a vegan. Instead of showing evidence by myself, I asked her to discuss with UCSD. As a research institute, of course UCSD has more scientific proof to prove why she is wrong.
We have been using FBT to support D’s recovery for 4 years. However, she still relapsed after 4 years. Then I realized that at the early stage of the recovery, FBT is very effective. However, when we want to handle the control back to our ED kids, to having a treatment center involved is a must. At least, it is true in D’s case. Weight restoring is not enough, state restoring is even more important.
A good treatment environment is extremely important to the effectiveness of the treatment. During the time that D relapsed, we tried to re-feed her at home. Every time we tried to challenge her food, there was a fight. Sometimes D (ED) threatened us to run away and kill herself. We had a dietitian and a psychologist in the team. However, it was not effective because the dietitian and psychologist didn’t have the leverage if D didn’t follow their advice. Even some professional treatment centers couldn’t provide such a good environment. I remembered in a local ERC treatment center, two staff had to monitor about 18 patients’ eating meals. How could this be achieved? I reported my observation to the director and she didn’t listen. No wonder D had lost 7 pounds within 7 weeks at that center. What a shame! So the conclusion I got is: Never choose the treatment center because of convenience, but because of effectiveness. The therapist who treats D manages 2 or 3 patients so that she has enough time and efforts to treat the patients. The dietitian manages about 3 or 4 patients. Each meal has been fully monitored by the staff. The patient could not find a way to skip a meal and even restrict to particular recipe. If the staff finds the pattern of restricting to particular food (like vegetables), they have the right to override it. The patients have been grouped into difference groups based on the progress. Most of them are very nice and D made some friends there. Every Monday evening, there is a session for the parents to talk with each other. Sometimes UCSD will invite someone who had treatment at UCSD and was fully recovered from ED to give a talk to the patients and share her experience. D really liked it. In addition, San Diego is very beautiful and sunny most of the time. There are so many places to visit during the weekends like beach, zoo, and sea world. D registered one course in summer and two courses in fall. D joined many activities when she was not in treatment like bible study, volunteering to help homeless, practicing yoga, surfing, hiking, photography and dancing. One day I was joking with her, “Are you taking a treatment or taking a vacation here?” She laughed.
The treatment phrases at UCSD include PHP and IOP. Unfortunately, they don’t provide residential treatment. D started from PHP program for adults. After 10 weeks of PHP program, D went down to IOP program. She stayed in IOP program for about 3 months. Both PHP and IOP programs have been divided into 3 levels. If the patient does a good job, she/he will move down to next level. Otherwise, she/he will move back to the previous level. If the patient misses a meal and her weight drops, there will be a consequence including moving back to upper level. Actually I found this is very effective, it will give the patients the motivation to move forward because it is easy to make a small progress instead of making a big one. D had been moving back to upper level two times. One is because she missed a meal and another is her weight dropped. She cried when that happened. She is an outstanding student and almost never failed in any area. She thought those were failures to her. But a rule is a rule, she violated that, she deserved for a consequence. The highest level in PHP is 10 hours a day, 5 or 6 days per week. The lowest level in IOP program is 3 days, 4 hours each day. They called it Deep Sea. Basically, the patient only eats one meal in the center. Which meal (lunch or dinner) is flexible.
A good treatment center will always catch the problems before the parents discover them. I give several examples here:
Example 1: D had the habit of doing water loading before the staff at the center weighed her. She played this trick in other treatment centers (our local ERC) and University Health Center (UHC). No one could catch her. Because they weighed her under the same pattern: time, location and wearing. It is easy for D to drink several bottles of water and hide some heavy stuff in her clothes. The difference could be up to 7 pounds. Without knowing the exact weight, how can the treatment staff measure the performance? UCSD has done a really excellent job. When we reminded them about D’s water loading issue, they told us that they had already noticed that. They used several ways to solve this problem: 1). They monitored D’s behaviors, suddenly weigh her after she peed. 2). Surprise weighing her on different day when she though they would not weigh her 3). Weigh her by wearing underwear. Once they found her lying about her weight, there would be a consequence. After several failures of trying, D learned lesson and gave it up.
Example 2: We found that D was running during the weight restoration and reported it to the center. They told us that they have already caught that because D didn’t gain weight based on the plan. The dietitian immediately added more calories on her food.
ED is like a sly fox, it uses our kid’s intelligence to fight against the recovery. Only the experienced hunter can catch it at the early stage.
As many parents mentioned in this forum, recovery is a healthy state, not weight . Julie O’Toole described the remission as follows in her book “Give Food a Chance”:
- Weight restoration (resume menstruation).
- No more restricting and eating a balanced diet on the meal plan.
- Back to normal playful physical activities.
- Going back to school and doing well.
- Interacting with friends and having a normal social life.
- Having a normal family life.
- Being able to control symptoms of anxiety such as over-exercising, insomnia, and worry.
- Acceptance of their bodies, at least enough to have normal age-appropriate relationships.
- Return of sense of humor and laughter.
- Ability to ignore any eating-disordered thoughts if they arise.
Menstrual recovery may be more important to cognition than even weight recovery.
I remembered when I joined this forum more than 5 years ago, I asked my mentor (another ADTD member) how long it would take for D to recover fully. She said how long your D was sick would be the time for her to recover. Actually it even takes much more time. It took us 3 months to restore her weight. I thought it was the most difficult thing we had done. The reality is that state restoration takes much more time. To help the kid to restore her state, you need an experienced therapist to treat the kid. One of the most effective ways is DBT. In UCSD, DBT  is mainly used for the treatment. The therapist teaches the patient how to apply the same dialectical, validation, and problem-solving strategies in her physical and social environments. For example, when the patient has a conflict with the parents about the food, she can use DBT skills to validate her feelings. 5 years ago when I was reading the book “Off the C.U.F.F.”  by Dr. Nancy Zucker, I didn’t understand why the book was talking about emotion management, not the treatment of eating disorder. Later I realized the treatment path was full of tears, fighting, screaming, all of those were related to emotion. Before the treatment, the relief of feelings for D is just crying or threatening us. Now she had one more skill to cope with her emotion. Of course, she needs more practice before mastering it. In last 3 years, we have been searching for a good therapist and learned many lessons. It is very difficult to find a good one. Here are the steps I used to find a good therapist:
- Search all of the therapist candidates online or other resources.
- Research their background including age, sex, education, experience. (Exclude those who have too much focuses like ED, marriage, couple issues)
- Phone interview (ask the same questions and make sure their answers make senses i.e. Can one patient under normal weight still run?)
- Face to face interview (understand their personality and treatment strategies on ED)
- Insist on family session (This is critical. This is the only way for the parents to judge the effectiveness of treatment)
- Periodically check the treatment results. (If the treatment is not effective, terminate it ASAP)
- Tip: I found that some good therapists and dietitians had AN before and fully recovered.
Family Session is also very important to bring D, therapist and parents on the same page. During the treatment, the parents should be the part of the team. Any treatment excluding the parents will not be effective. The parents can monitor and report the kid’s status while she is not in the program. The successful recovery means the consistent behavior no matter the kid is in the program or not. In the family session, the parents can learn how the therapist communicate with the patient, how the patient respond to the therapist’s talk. I remembered that in the first family session, D couldn’t stand it and wanted to leave before the session ended. At the last session, we had a very easy talk and everyone laughed. What a big difference. Family session at UCSD is once a week. D will talk to the dietitian and then the therapist. Sometimes the meeting lasts up to 2.5 hours. Before the family session starts, my wife and I will always have a discussion about what issue needs to be addressed. We narrowed down one or two topics. The session always started with asking D 3 questions:
1). What you have done good in the last week?
2) What do you think you need to improve in the next week?
3) How will you do it?
Before the session starts, we will have a talk with the therapist about which topics to discuss and make sure we are on the same page. Each session will discuss one or two problems. Sometimes I feel like each session is like a war fighting against ED. It requires a good plan, strategy and team collaboration. It is not easy. Sometimes the room is full of arguing, crying and fighting. Our therapist will lead D to calm down and move forward.
I understand it is very hard for D. One day D told me “Daddy, you know it is really hard!”, I answered, “Sweetie, I know.” I feel lucky that we had one of the best therapists and dietitians at UCSD to help D and D likes them. I guess that most of parents here had this experience that suddenly your kid was triggered by ED thought or whatever, you have no way to solve it. The therapist provides 24/7 support. When the bad thing happened, instead of confronting with the ED by ourselves, we told D to talk or text with her therapist. It gives us a buffer to maintain a good parent and child relationship. I don't know other treatment center could do that. During the treatment at UCSD, my wife’s life is getting a little bit easier. What she does is to support D. Anything related to treatment rely on UCSD.
Before we left UCSD, we worked with the center to draft the Relapse Prevention Plan. We draft a contract before when D was admitted by a college last year. It defined RED, YELLOW, GREEN zones. But the college contract is only for the kids in full remission. The college is not a place for the treatment. If the kid is not ready, it doesn’t matter GREEN, YELLOW or RED zones are. She will relapse. The only way is to convince her to take the treatment. FBT may bring the weight back to normal, however thoughts and behaviors will determine whether or not she is going to relapse again. That’s what happened to us. After the first semester, D relapsed. We took her home and re-fed her. Her weight was restored when she went to the second semester. She relapsed again. This time the Relapse Prevention Plan is much simpler, if D drops one pound, she had to restore one week. Currently D is eating and maintaining her weight by herself. She still has two issues: 1). Under portion. For example, she may miss 100 calories per day. 2). Refill for increased activities. She is working on it. We still have the same therapist and dietitian at UCSD to support D. They will have weekly meeting and texting any time if necessary. I asked D several weeks ago, “Will you be recovered earlier if we send you to UCSD in high school?” She said, “It may not be possible since my brain was still not developed. Even finish the program, I will still relapse”. I really don’t know if D will relapse again. We are doing our best and preparing for the worst. I called the following picture: The Heart of Hope. "Hope is being able to see that there is light despite all of the darkness." - Desmond Tutu
- My Daughter is an “Ethical” Vegan (With Anorexia) …
- Veganism and Eating Disorders: Let’s Be Frank
- My Vegan Diet Hid My Eating Disorder
- Using veganism to hide or facilitate an eating disorder
- Recovery is a Healthy State, not Weight
- What is Dialectical Behavior Therapy (DBT)?
- Off the C.U.F.F.
- WHY I’M TRANSITIONING AWAY FROM VEGANISM…