That blog was an interesting read- marcella, thanks for sharing it.
In an effort to clarify a few things I saw on there, let me make a few points. First, to my knowledge, none of the posters in this thread are medical students. There was some discussion of whether ED issues are discussed in medical school, and that is moot for this particular group of respondents. Second, I was mentioned as "the moderator"; although it is true that I am a Senior Mod on SDN, Psychology is not my assigned forum- that honor lies with Therapist4Change. I post a fair amount here as I am a clinical social worker with almost-but-not-quite 10 years of post-grad clinical experience.
In my initial post, I spoke of refeeding, and I think I may have been using a much narrower definition in my mind than what many on your board are using. Below 75% of optimal body weight, the body is prone to going through "refeeding syndrome" and needs close medical monitoring- hence the AAP guideline. Since I work in a medical facility, and ALL of the patients on my service are <75%, my mental definition was of the acute stages. I wholeheartedly agree that refeeding is a PROCESS, much of which occurs as an outpatient with the parents and caregivers being responsible for meals under the guidance of the ED team. We get our patients to about 78-80% and the rest is done outpatient and/or in a treatment program.
I re-read Harriet's article this morning, and I do stand by my opinion above- that a lot of the support that her family likely received goes largely unmentioned. My critique is not of Maudsley, nor of the family, but of the slant of the article itself. I think she relayed the frustration of the treatment process very well, and raised some excellent points regarding barriers to treatment: prohibitive costs, proximity to appropriate treatment providers, having no idea where to start looking or what you're even looking for.
For me to want to share the article with the families I work with, I'd like to see more emphasis on the fact that Maudsley utilizes a team approach. The most frequent argument I hear from parents is the lack of necessity of a dietitian. Again- we all know how important this person can be to the family. So if Harriet ever writes another article, I'd want her to talk about things like: What role did the dietitian play? No doubt, the meal plan was adjusted ad nauseum to accomodate for Kitty's preferences, growth, and level of activity.. And the pediatrician? What kind of monitoring was done- weights, heights, lab work, vitals? How often? What about the therapist? How often? Family sessions only or did Kitty have individual time? Which team members are/were available for after-hours issues- because Lord knows that crises do not schedule themselves between 8-5 M-F. I cannot relay via internet how much I would LOVE to have such a peer-written resource to provide to parents so that it's not just coming from "us" to "them".
Engaging parents to take an active role can be difficult, often due to ignorance or stigma about EDs, limitations in resources (both family and geographical), and unfortunately in a few cases I've worked with, seeming apathy. The family themselves have to be willing to invest the time, energy, and money. Of my families who are willing and able to do that, we have some great outcomes! It's wonderful to see the fervor with which the parents on the blog have fought to get and keep their children healthy. I truly wish I could say that was my experience with every family who walked through our doors. Truly.
To attempt to educate and engage, we provide parents with FAQs about EDs, reading material suggestions (including Lock/LeGrange and Siegel in particular), and ongoing support both during and after hospitalization. We share with them that current research shows EDs to be about 50% genetic. My physician shares research about differences in PET scans of brains of anorexic vs non-anorexic teens which show that this is not a "behavioral" issue- it's truly a change in brain function. We tell them it's not their fault, but we need their help in getting their child well. We let them know that the average recovery time is 5-7 years, so they need to prepare themselves for the possibility of a long haul. It's a start. Several mothers, finding us after multiple attempts to find help, have talked to me about how they can do outreach to other parents as a preventive measure. Ideally, they'd be able to teach about early warning signs and be able to direct other families to us so that there is minimal time wasted on unproductive phone calls with underinformed or misinformed medical providers.
Ultimately, we're all on the same team- keeping kids healthy. (And adults, too. But I don't work with them so I'm just going to ignore them for the sake of this post.
)
