It doesn't work, but it's what we've always done

A wise mother who only recently fell down the rabbit hole of ED world with us and found our online support forum states the case so clearly I just have to share it:

"All of the clinicians we've been involved with have seen ED many times before. But it's like they have this weird recipe for ED treatment:

  • Muck around with the diagnosis for at least one week (longer if necessary).
  • Refer to Nutrionist who will draw up inadequate feeding plan.
  • Refer to Therapist who will apply outdated, ineffective methods to the problem.
  • Watch patient decline.
  • Hospitalize.
  • Repeat steps 2-5 as required.
  • Home refeeding as last resort.

She goes on to say: "I keep reading in the literature that AN treatment takes years. I think it's only because the most ineffective things are done first, and they'll keep doing them ad nauseum!

"Imagine if your doctor said "I'm sorry, your d/s has cancer. First we're going to try this really old chemotherapy for a few months. It doesn't work, but it's what we've always done. Next, we're going to try other treatments that are ineffectual, while the tumor gets larger. Finally, we'll use another new chemotherapy that's really promising. It works best on stage 1 cancers, but we wait until the cancer's a stage 3 or 4 before we use it."

Thank you, IrishUp, for saying it like it is.


  1. Muck around with the diagnosis for at least one week (longer if necessary).

    A week - where in the world are you living? 6 months at least!

  2. sorry if that sounds angry - actually it's not meant to. We were lucky, it only took a few months for us, but we WERE unusual. That said ONCE the diagnosis had been made they at least did try step 6 first.

  3. Sadly, that's pretty accurate.

    But at least there the parents were told what treatment their child was going to have.



    Be bitter. It's kind of cute!

  4. How true! It took us three weeks for the diagnosis, then we went quickly through steps two, three and four before jumping to step seven. Thanks to your online support group, Laura, we languished in step three for only three weeks (I feel fortunate it wasn't longer) and we skipped steps five and six. I can't wait for the time when everyone jumps to refeeding after diagnosis.


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