The sickest patient they've ever seen

Why are so many parents told that their child is the "sickest" "most entrenched" "worst case" the clinician has ever seen?

Most clinicians haven't seen very many.

And most clinicians haven't witnessed the agony of recovery up close at the dinner table -- though too many are familiar with watching a patient sink further and further into illness every week. Patients who are not doing well are often pretty quiet. It is the patient whose illness is being shown the door who kicks and fights and screams.

Parents need -- and deserve -- to know that the tantrums, thrown food and extreme behaviors of early recovery are not unusual. There is no easy, quick, simple, or painless way out of an eating disorder. No matter how compliant and easy your child has always been, plan for extreme reactions and decide in advance what you will do to keep yourself and your family safe and calm. The distress isn't easier in a hospital or inpatient facility or a residential center, though it may be more internal and out of sight.

Extreme behaviors are caused by how sick the patient has been allowed to get, not by treatment.

Comments

  1. I followed the links, read some of the comments ...

    the parent who was told that her daughter 'could live like this because she's physically healthy'

    made me shudder in fear.

    THIS ...is not living. It is existing. Period.

    And in the meantime, regardless of the patients weight, there is more to what is going on than weight ... damage being done can be done at underweight, normal weight and overweight (ask my docs)

    Her daughter deserves to live, not just exist.

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  2. It has been my experience that ranking ones symptoms is not helpful in ANY manner what so ever! One, different then other issues there is a glamorization aspect that the ED hears/get when told that they are sicker, thinner, etc. that feeds ED and does not promote recovery and two talking about how sick or whatever does not do anything to promote action towards recovery! Regardless of the degree of illness the ED needs to be treated and health needs to be restored. Besides, I have many individuals that seek to compare themself to another by "well I am not as sick or thin as her so what's the worry all about" and the response that any provider or parent would give "we are not talking about them but instead focusing on you". So mark this down as another unproductive aspect.

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  3. Some clinicians believe -- and they may be correct -- that they need to raise parents' anxiety levels in order to spur them into action. But my advice would be to gauge the level of anxiety first, before adding to it. It's possible to make parents so anxious they become paralyzed with fear.
    concerned dad

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  4. Good point that you make concerned dad. As a clinician I tend to use the adolescents symptoms, change in funcitioning and current circumstances to aid parents and patient in enhancing motivation and putting fear/anxiety into action instead of using comparisons to others and that seems to be effective. I believe that the goal needs to be moving forward in recovery and although the intent might be good to motivate like you point out the fear can also be immobilizing!

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  5. "Extreme behaviors are caused by how sick the patient has been allowed to get, not by treatment."

    I think that's part of the problem. When I was younger, I was real quiet and compliant when my family was trying to get a minimal amount in me. All three meals added up equaled less than half of what I needed for the day though. Whenever they tried to increase the amount, that is when I'd have "extreme behaviors." The therapist I had told them it meant they were pushing me too quickly, so then they backed off.

    Now I'm 20 and still dealing with this, even more now than before. But I'm too scared to let anybody try to help me. I wish they had pushed past my behaviors instead of letting me push past them.

    I don't think telling somebody they (or their child) is the worst case is helpful either. I think it can be discouraging and scary, and I don't think many are pushed into action by fear or discouragement very often. People need hope, encouragement, and a plan of action.

    M

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  6. M,
    I hope you find the support you need to push past the scary parts. There's a whole wonderful world out there just waiting for you.

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  7. Yes we heard this comment and I think clinicians use it to highlight how serious the problem is and to gauge your response and motivation in dealing with/fighting the illness. For some it can backfire with parents running a mile to find alternative treatment that perhaps won't be so hard. But there are no short cuts, no pain - nothing gained.

    I list of ED behaviors parents/families are likely to encounter would be really helpful so they know what they are seeing is ED driven. Likewise, a list of ED weight avoidance tactics parents have experienced.

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  8. Absolutely. Amen. In our case, we didn't hear that our daughter was "the worst case ever seen". We simply didn't know anyone else going through this and had never seen behavior like this out of her before. No one...NO ONE...told us it was par for the course. Not her pediatrician, her ED doctor, her ED counselor, her nutritionist, etc. I got understandable scared trying to deal with it day in and day out and trying to keep her safe. Even though no one said it, I thought her case was must be pretty bad based on what I was seeing with my own two eyes. And I didn't want to take a chance that I might fail at keeping her safe. So she ended up inpatient and very, very angry about it.

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  9. Laura,

    Does someone have a list of behaviors with an explanation that we can print out and give to local doctors? Maybe they'd be willing to give the list parents. Something that explicitly states that the behaviors are normal for the recovering brain.

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  10. Anon mom, that sounds like a wonderful thing to have. But the problem is authority. We need a large organization to issue that kind of recommendation or list in order to have credibility to clinicians. Watch this blog for an idea on that very soon!

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