F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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searching
We spent Christmas Day in the Emergency Room with my 22 yr. old dd. She has been sick for several weeks, (exhaustion, chills, nausea, diarrhea, severe depression), and her weight had dropped to 74 lbs. She is 5'6", so that puts her BMI at a horribly dangerous 11.9. We had been told that even with guardianship, the Behavioral Unit there would not restrain and feed her unless she was near death. (She pulls NG tubes out, so that was our only other option.)

To our horror, the ER doctor said her labwork was fine and she could leave. (Jaw dropping.) We insisted she be assessed by the Behavioral unit, so they move her to a secure hold area where we are not allowed to be with her until they have time to come and assess her. She has a horrible exercise compulsion, and is afraid to be alone because she can't stop exercising. They left her there for 3 hours before anyone came in, and although we told the nurse about the compulsion, she told dd she didn't feel it was her place to stop her.

Although the person doing the assessment was told of her horrible ED, OCD, exercise compulsion, anxiety, severe depression and suicidal thoughts, we were told she did NOT MEET criteria to be admitted.
We drove an hour and a half to go to this ER, as it is the only one that takes ED patients. We are still horrified and confused at the whole mess, but you can IMAGINE how the ED thoughts have taken over my child. It has been 2 days of utter hell and I don't know when this will end.

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AUSSIEedfamily
Dear Searching,

You might wish to do a bit of research on these & you may find some information that you can pass to the clinicians so that they can see what they are following is not in line with good practise written by really good ED clinicians


You could also use the F.E.A.S.T guidelines for evaluating clinical facilities. http://feast-ed.org/TreatingEDs/ClinicalGuidelines.aspx


There is also the MARSIPAN guide lines from the UK http://www.rcpsych.ac.uk/files/pdfversion/cr162.pdf

& this from AUSSIE http://anp.sagepub.com/content/48/11/977.long


Warm & Kind thoughts to you.
ED Dad
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tryingmom
searching,
I'm so sorry this is happening.  Can you say where you're located?  Maybe someone on the forum can suggest a good provider.  If you were able to get your d to an ER, do you think you could get her to a good program that is further away?  We had the worst experiences in ERs and regular psych units.  You may also want to look into getting a guardianship so you'll be able to deal with providers.  Do you have a good doctor yourself who would be able to understand that your d is gravely ill?  He or she might be able to help you get past some of the bureaucratic stupidity.  Is your d's temp below normal?  Low pulse?  Anything that would show she's at risk might be useful if you can get help from a competent doctor.

I hope someone can jump in here and give you more immediate, practical help.  In the meantime, keep your d warm (blanket, heating pad) and try to give her warm drinks.
I'll be praying for you.
Tryingmom
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Lmomma
Your daughter definitely meets the criteria for admission at Denver Health's ACUTE unit (http://www.denverhealth.org/medical-services/acute-eating-disorders)
They are a fabulous comprehensive medical team, especially Dr. Guadiani.
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trusttheprocessUSA
What a horrible time. I am sorry. So many professionals don't understand EDs and many don't want to deal with it because they believe having an ED is hopeless. I was told just that by our family pediatrician. We almost lost my son and his lab work came back fine too. Also, it's Christmas and that may be the reason you are being met with staff that isn't top notch and may be filling in.

Since her BMI is so low her heart is weak. She needs to wear a down vest 24/7, the heat turned up in rooms she occupies and she must be monitored so she doesn't exercise. Keep her as still as you can and try to keep her hydrated and of course feed her what ever you can. Keep looking for expert care and don't give up until you found it.
I hope you can find what she needs ASAP.
Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
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Foodsupport_AUS
That experience sounds so dreadful. Did they by chance say what were their criteria for admission?

I have had dreadful experiences in ED with my D as well. It is so disheartening when you know what they need, but the professionals don't seem to hear or see it. Having to fight for care, the need for which seems to be self-evident is yet another difficult thing about being a parent for a child with ED.

I hope you are able to find her a place soon that offers her some safety. Thinking of you.


D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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doctorp
From a medical perspective, for what it's worth, I absolutely agree that your daughter is likely unsafe as an outpatient with a BMI of 11.9.  ACUTE is excellent, surely.  But I think there are other places nationally that could stabilize her as well - the trick is to have someone accept her or at least guide the ER visit BEFORE you get to the ER, as many ER docs do not know enough about eating disorders to make a good decision about admission/going home, and often don't know admission criteria.  I always try to tell patients new to our program (we treat young adults as well) that they need to let me know if they are headed to our ER - and our ER knows a good deal about ED's.  It's just that ER's are busy places, with many, many players, and it only takes one provider to make a misstep to have someone sent home who really should be admitted.  If I know in advance that someone is coming, I can call in advance and give my phone number and have the ER call me if they are considering sending a patient home, so that we can usually avoid a problem.  Don't give up.  If you can let us know what state you're in, I would be happy to let you know of some providers you could call who might be able to shepherd you through a bit better.....  - Rebecka Peebles, MD

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Torie
Hi Searching - In case you don't already know this, Dr. Peebles (above post #8) is EXCELLENT, and I would move heaven and earth to get my d to her (and her team) at Children's Hospital of Philadelphia.  Of course, there are other excellent facilities (thinly) scattered across the country so I might pick a different location if my insurance / location were different.

Good luck and please keep us posted.
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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