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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Jordana
My daughter is 14 years old diagnosed with AN. She gained weight on a mood stabilizer and when she switched off the medication, she started to lose weight. The psychiatrist said that was normal. She had gotten much heavier than her normal weight. After a couple of months, I noticed that she was getting anxious around food and brought her in for an intake at an after school ed program. Her blood pressure was very low, though her weight was in the normal range. She ended up in the hospital with low heart rate and bradycardia. She spent one week on a refeeding program then to an IP with an NG tube because she was only eating 40% of the food. After one week, IP she got off the feed, but did not eat enough and her weight started dropping so they put in the feed again. She refused to eat for a week. Yesterday, she said she would eat a meal from Panera.  She ate 100% of the meal but nothing since. She is on a full NG tube feed. She hasn't gone outside in 3 weeks, not allowed because she has to eat 100% of meals, though she is not medically compromised, she can't listen to music either. She has to sit in the hall until she drinks the ensure if she doesn't eat the food so she ends up sleeping on the floor, until the groups.  She has a mood disorder and can be stubborn. I am not sure if I should change IP facilities.  One of the nurses said that I should not be so involved in my daughter's care and that I need to let my daughter figure it out for herself and just come around to following the rules and eating. So far my daughter has been eating less in patient than at home. Is this normal?  Maybe since she is on full NG tube feed, with no need for weight restoration, she does not want to eat?  I am at a loss of what to do, if anything but wait it out. She been IP for 3 weeks. (this is her 5 psych hospitalization this year, though first for AN)  Any ideas? 
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Enn

HI Jordana,
Welcome to the club no one would ever want to join, but I am glad you are here. 
This is a club where do share very similar experiences and I am sure that others will be here soon as well.

NG tubes can be used to get weight on and I am glad that she is being fed. However, it seems that you have some significant concerns regarding their methods? Is she gaining now? It will take a long time for her to want to eat. Right now it may be wise to keep offering food as long as she is being fed and gaining weight, that would be my first priority.
I do have concerns about her sleeping on the floor? That does sound quite extreme. Have you discussed their protocols with them? 

If you give us your geographic location others may be able to steer towards some good programs and away from others. 
I see you are from the States and many have had success with UCSD programs and I do believe they offer an IP program too. 

http://eatingdisorders.ucsd.edu/treatment/adolescent-programs.html
They offer a very similar sister program at San Francisco campus.

Your d is very ill right now and may not be able to eat on her own at the moment. Hopefully with more weight on her and time, and the continual exposure to food every day she will start to eat little by little until she can eat a full meal. 
It takes a long time...

Big hug,




When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Jordana
My daughter is IP in Virginia. She does not need to gain weight. She never needed to gain weight, she was malnourished and dehydrated from calorie restriction after losing weight from being slightly overweight. She is not on weight restoration, just weight maintenance.  I wish she would just eat 100% of meals and snacks to get the NG tube out. I wonder if there are facilities that work more individually with children to get off the NG tube.  Though the therapist did buy her Panera which ate 100%. Sometimes, I wonder if an out patient approach would work, since she is not underweight and was eating food at home, though not enough. 
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Foodsupport_AUS
Welcome to the forum. From Australia here so can only speak of US facilities by reputation. You mention your D is on a weight maintenance NG tube, this is probably the first mistake of her team. By giving her enough food to just maintain weight it is likely her body is remaining in a calorie restricted state- which in turn means her brain is unable to recover. Rebecka Peebles from CHOP wrote a great paper about stabilisation of children with all kinds of eating disorders- and the up shot of it was that even those who are "overweight" require a weight gain diet at the start with often fairly active re-feeding. Note that some of the patients in this study at weights at 150% of expected body weight. https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-017-0134-6

If her ED is giving her a hard time, her motivation to get off the tube may be very low. The better her nutritional rehabilitation, with a likely need for weight gain probably to her previous highest weight, the more likely she is to be able to see a way forward and actually want to work with you. It is not about motivating her to get off the tube. It is about allowing her brain to recover enough that she is willing and able to feed herself with out resorting back to dieting/restriction. 

CHOP only has medical stabilisation programs but I know that Rebecka Peebles does see patients otherwise. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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ValentinaGermania
1/4 of all patients have AN and are NOT underweight. You can die of AN even if you are "overweight" by normal charts in fact. The malnutrition of the brain is the problem.

"She has to sit in the hall until she drinks the ensure if she doesn't eat the food so she ends up sleeping on the floor, until the groups."
That is indeed really strange, why do they allow that?

"She has a mood disorder and can be stubborn."
They all have a very strange mood with ED and they all are very stubborn. That is part of the ED character.

"One of the nurses said that I should not be so involved in my daughter's care and that I need to let my daughter figure it out for herself and just come around to following the rules and eating."
That is really outdated and not helpful at all. YOU need to be the person that is in charge when she comes home so how should you learn that?
She will not be able tomake good food decisions for a very long time so to wait for her insight and will to eat is lost time.

"So far my daughter has been eating less in patient than at home. Is this normal?"
No, that is not normal at all.

Normally NG tube is only last choice if nothing else works. Normally she should be offered food in increasing amounts 6 times a day (3 meals and 3 snacks) and should get NG tube fed in addition when she did not eat enough.
It is important that she does not forget how food tastes, to chew and to swallow.

I would question that program and search for alternatives. The programs recommended by Scaredmom are heighly recommended although far away. Maybe it is worth to look outside your state for better treatment.





Keep feeding. There is light at the end of the tunnel.
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Enn
We have a saying here 
It is about the (mental) state not weight that is the key.
Here is a video, hope it is helpful
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Jordana
Thank you for the video.  I am wondering if the facility my daughter is in is the best place for her.  I am not sure how individualized eating disorder treatment should be.  She has not been outside in over 3 weeks. There is not a lot of light on the hall where she is.  I know this is a "reward" when a patient eats 100% but I see it as therapeutic and my daughter does not see it as a reward.  I also do not get a lot of feedback on progress being made or what is done in groups, nor do I get parenting advice..  If anyone has an idea how IP programs are supposed to be, I would be curious what the norm is. or any suggestions on good IP individualized programs who can work with a 14 year old girl who had a suicide attempt before any ED and previous psych issues, including self harm, before the ED.  
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Enn
There is a category of parents reviews of treatment providers, you could do a search of the forum to see if others have rated the place your d is in.
Or if you are comfortable naming the place here, others who have been there may be able to directly respond with their opinions.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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sk8r31
As scaredmom says, there may be other options that better fit your d and your family.  Knowledge is power...find out what other parents might have to say, do your research, come and ask questions.  It does sound like the facility that your d is currently in has some 'red flags' in terms of treatment protocols.  
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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debra18
You can look into kartini clinic.
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ValentinaGermania
Is there no good ED facility at the east coast? All highly recommended clinics seem to be at the west coast...🙁
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
CHOP is on the east coast but does not have residential, actually neither do Kartini or UCSD. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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ValentinaGermania
So if there is no good IP in your region, can you take her further away?
Or plan B, can you go to her IP for nearly every meal and help her to eat there or are parents not allowed there for meals?

I would normally not recommend to take her home with tube but that is something you also can think about...with a good team around it is possible to do the refeeding and all the learning to eat again at home.
Keep feeding. There is light at the end of the tunnel.
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debra18
Tina you are coming here to open one? 
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ValentinaGermania
debra18 wrote:
Tina you are coming here to open one? 


I try to fix some issues here in Germany first ...😂

It is so sad that parents are left alone with bad treatment in year 2019...
Keep feeding. There is light at the end of the tunnel.
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debra18
Very true 
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Jordana
My daughter has made some progress since last week. She completed 100% of breakfast (all ensure but better than nothing) and is sounding better. The facility she is at has been more proactive after I have emailed daily.  She is now getting to listen to music right after a meal if she completes most of it.  Little steps.  I can't wait until her NG tube is removed.  She been on the tube feed for a month now.   Her treatment has been very stressful.  Its hard to take a mental break. I feel badly because I had AN in my twenties and she must have inherited the gene. On the positive side, I understand the illness. Though, treatment approaches have changed a bit since the early 1990's.
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Enn
I am glad that your advocacy for your d is making a positive impact! 
Happy she has been taking the ensures orally. That is a good sign.
I agree with you it is stressful. Take good care of yourself too so that when she gets home you will be prepared.
You are well aware, as you stated above that it is a genetic brain illness and it is not your fault. I hope that you hold onto that and you know that treatment has come a long way since the early 1990’s. So although it is never a good time to have an ED, it is now better, I hope, than it was 20+ years ago with the research we have to date.
all the best
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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