We have made it to week eight of refeeding without any signs of relapse, slips yes, but relapse no. I attribute this milestone to using the magic plate to deliver the following prescription:
1. adequate levels of fat i.e. 60-70 grams per day
2. nutrition intake at least every four hours
3. a variety of foods
Emily's weight is maintaining at exactly the 52nd percentile of the growth chart for girls, which is roughly the percentile she was at from birth to age 12. Her mood and energy level are largely very good. She is eating her meals with only occasional objections. She is juggling school, friends, water polo and fund raising for a trip to Poland with a normal amount of frustration and success. All in all, I would describe this as the best she has been in at least two years.
We are indebted to Harriet Brown's book, 'Brave Girl Eating' and the good people at the Maudsley Parents website who offer the 'ask an expert' program, for providing us with information and insights that were critical to getting us to this week eight milestone.
While things are good right now there is still work to be done. Emily has rejected the efforts of the Team to provide her with CBT so they have released her from treatment. She will be go in for bi-weekly weigh ins and we will be notified if her weight drops by two pounds. She has acknowledged that she is not prepared to let go of the eating disorder and make recovery her goal. But she is prepared to stay on track with eating to ensure she can achieve her goal of going to Poland in March. And she is not making any movement toward taking responsibility for her nutrition. It is as though she will eat as long as I am in complete control. She will snack on her own but she won't tackle suggesting or preparing a meal.
I have been pondering her inability to let go of the disease and her alexithymia which is the inability to express emotions with words, a term a learned from watching Dr. Thomas Silber in this UTunes video called Grand Rounds . And wondering how they are connected to each other and to the E.D. and what brain functions are involved in maintaining them. Every time I read or watch something on cognitive remediation therapy (CRT), it just rings so true with what I see in Emily. But so far her Team have not been able to offer any help in that area. I recently watched Kara Fitzpatrick's presentation on insights into the neurobiological basis of eating disorders and was once again struck by how those concepts help to explain Emily's inability to change her mind about the E.D. At Stanford they are conducting a study to determine if CRT prior to CBT helps the patient to develop the cognitive capacity to shift their thinking so that the CBT can be more readily adopted. I believe that CRT could help Emily to develop better set-shifting and central coherence functioning and then she would be more receptive to the CBT and indeed be better at dealing with problem solving in many areas of her life. But I can't figure out how to access CRT for Emily.
Hi,
ReplyDeleteI just found your blog and as someone who is in recovery for my own eating disorder, I'm interested to read your perspective on your daughter's eating disorder. Like your daughter, I am someone who truly struggles to express emotion, and I think that this was one of the ways my eating disorder helped me to cope. My eating disorder was (and sometimes is) my way of expressing emotion because I find it so difficult to do so with words. I think tha this could also help to explain why Emily is reluctant to let go of her eating disorder - because it serves that purpose, and she hasn't been able to learn how to express herself without it, she still feels as though she needs her eating disorder. I don't know if any of the things I have said seem true for Emily, but I hope that my perspective has helped you to gain some insight into her eating disorder.