Hi, sorry it has taken me so long to respond. Let me try to address your questions.
He rarely does 100 percent of his meals in the program, and he does not complete the boost, either.
In terms of support, we have a feeding plan based on consequences and contracts, but unfortunately his fear of food and getting sick is stronger than any consequences. Again, he will eat but usually not the full meal. We will sit with him and try to coach him. Like this weekend, he is going through a lot of anxiety because he fears he is having diarrhea. His stool is very lose this weekend, and he is afraid of getting sick. So he refused the waffles I served him, even started crying because he said his stomach did not feel well. But, I convinced him to eat toast and butter and then he also ate a slice and half of turkey bacon--and a few sips of milk.
You ask how his refusals look. At his worst, he will completely shut down--like in a place where he can't even hear us. A more normal refusal comes when he gets half way through a meal and just stops and can't be coached into finishing or even having a carnation.
Both volume and variety are an issue right now. The kinds of food he will eat are so restricted--mostly just pasta, hash browns, turkey bacon, peanut butter and jelly, chips and other snack foods, like cookies. Chicken sometimes works, but it's inconsistent. Cheese pizza sometimes works but also is inconsistent. Waffles were working up until today.
On days I'm there, I sit with him. My wife also sits with him. We do try to eat dinner together, but sometimes he just wants to eat alone at the table. We try to talk about non-food issues, unless we need to go into coaching mode.
On our first visit to the hospital, when he was just 55 pounds, he ate great. Over two weeks, he reached the point where he could choose his own food, and he was eating everything. His weight rose to 63 pounds. He was happy. He called it the best vacation he ever had. Because he was doing so well, the insurance stopped coverage and we had to go home a week before he started his program at UCSD. During that week, we increased his weight by a pound, but by the end of the week, things were getting tough. When we started, the UCSD program, things went downhill. The food was different than the hospital, the time between meals was more condensed because it was a six-hour pediatric program. He just couldn't adjust and lost weight. We ended up back in the hospital, and it was rough. He was really depressed. He couldn't eat the hospital food because it was too safe. We had to provide every meal to get him ready for UCSD. He needed a feeding tube--twice. They took it out once but then put it back in. That's when he gained the most weight. Then, he improved and was eating better. Got up to 70 pounds. Then, he was sent back to UCSD. Things started out okay the first week, but have been a struggle these last two weeks. He is down to 69 pounds, and probably after this weekend, down to 68. This is a severely undernourished 13 year old. But he can still function in all other ways. And his vitals are good. In the shortened school program there, he is doing excellent--even if his brain is starved for food.
So the next step is to put into the 10-hour adolescent program, which means all meals there, and if that doesn't work, 24-hour residential treatment, likely in Denver, which means he would be separated from us for about two months--but we'll do whatever it takes.
Thanks for asking these important questions.