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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Frida
I’m new here—My D turned 18 recently, and was diagnosed w restrictive AN in July, when she entered an in-patient hospital program. She weighed 104lbs at 5’8.”  We think her ED started back in April, or at least, that is when it became noticeable to us. She went from 132lbs to 104lbs within a 5 month period. We took her to her pediatrician a few times during this period to be sure she wasn’t sick and wanted to rule out things like PANDAS. She hadn’t had a period in 2 months, and the doctor noticed a double heart beat, which is what put her into the hospital program. We learned that she was eating only 500 calories a day. She works in a restaurant and would tell us that she ate at work when we didn’t see her having dinner. She would say she ate lunch at school, or went out w friends for meals. We were clueless- we believed her. She stayed in the hospital for 5 weeks and wanted to leave in order to start school on time. We took her  AMA, because she promised she would continue with her recovery, and she had the support of a dietician and therapist. She was a resistant patient in the hospital. She was placed in a pediatric unit, at 17 yrs old, being the oldest child there. She did not do well with the restrictions on her movement/ privacy/ freedom to leave or even see friends. Group therapy was difficult because of the maturity differences, and individual therapy was spent talking abt the ED and not the root causes of it. She was diagnosed as restrictive because she has been a vegan since she was 14 (ethical reasons) and had a very hard time re-feeding due to having to eat many things she hadn’t eaten for years. She developed gastrointestinal issues while there, and her anxiety and depression skyrocketed to new levels. She even called a meeting with her hospital team and filled out paperwork to sign herself out. She has had a history of depression/ social anxiety/ panic disorder since she was a 15. She has tried multiple CBT therapists, and has not stayed with any of them for more than a few months, stating that she doesn’t want to talk to them, and that they can’t help her. She has gone to psych meds drs, been placed on anti-depressants/ Lithium/ Adderall/ Xanax ( not all at once), and nothing has worked. One doctor thought she was bi-polar, but those meds didn’t work either. Currently, she is on Remeron (prescribed while in-hospital) and she says that it isn’t working. She has had genetic testing for psychiatric drug/addiction tendencies done, but that wasn’t much help. I don’t even know if it was worth the $$$. She has relapsed, and is currently at a lower weight than when she first went into the hospital. Everyone on her support team, including her school, says she needs to go back in-patient, but she says she is 18 now and will refuse to go, and if forced, will sign herself out and refuse treatment. She told us the hospital made her mental state unbearable. Her dietician no longer wants to see her and doesn’t want to accept responsibility if something should happen. She has taken to not speaking during therapy, which is now being called “selective mutism” ( which I am calling BS), and we are at a loss of what to do. She is determined to let us allow her to re-feed herself, but she is so afraid to gain weight that she is adding calories 20-30 calories at a time. She doesn’t want to be hospitalized before Christmas, and we do have a doctor appointment for her right afterwards. If the doctor finds any heart irregularities, she will be back in and she knows there is no exception to this. We are working with a therapist who does EMDR, but it’s not an immediate fix. We know she needs more support, but cannot figure out a way to get her to go to the hospital voluntarily. She has to want to recover, and she sometimes wants to, but not always. We are in agreement that her mental state suffered while in-hospital. She cried for hours every day. The hospital will address her physical concerns, but the mental concerns are just as important. Lastly, the dietician is monitoring her weight every week, and checking her food journal— however, she communicates food plans in exchanges like the hospital used. Is this how all dietitians working with ED do it?
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ValentinaGermania
My d was also the oldest child in IP and it was very hard for her. She was always the heaviest at every weighing (they did open weighings there) just due to her age. Mine was also not engaging in any therapy because she simply did not know what to say there. She did not know why she started to diet and to loose weight. Now knowing that this is a genetic metabolism disease it would be same to send a diabetes patient to a councelor and make him talk about why he got diabetes...

" Lastly, the dietician is monitoring her weight every week, and checking her food journal— however, she communicates food plans in exchanges like the hospital used. Is this how all dietitians working with ED do it?"

I know this food exchange idea but I do not really like it. I have a friend that is an adult anorexic and she is doing the same as calory counting with this exchange thing. In my personal opinion an AN patient should not see any dietitian. You as the parent might need that but it is not normal to see a dietitian for a healthy person, normal would be to just eat what is served and cook normal full nurished family meals. I also do not like the idea of food journals. I know that this is very common but it keeps the patient concentrating there brain on food all day. She should socialise and go out with friends and have fun instead of thinking about what she has eaten for breakfast and what she will eat for snack and ...you see what I mean?

Would it be an idea to make a contract with her? To saywe will support you to not go back to the hospital but you need to follow our rules at home for tha? Eat what we serve, go to the GP and weighings and work with us together?
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
Welcome to the forum, sorry that you have had to find your way here. Eating disorders are very counter intuitive when it comes to treatment. The one thing that makes sense is to eat a lot more food, and of course that is the one thing they can't do. It is normal, in fact expected that anxiety and distress increases with hospitalisation. Therapy early on is of limited benefit, some treatments like FBT don't offer therapy at all until after weight restoration. It sounds like your daughter is becoming increasingly unwell, her insistence that she can do this herself, without hospitalisation is also incredibly typical. You could offer her something like FBT -TAY if you can find someone to help you, or even regular FBT can be used for this age group. Your daughter is also likely to think this is a bad plan. 

Most parents here have had to require their children to engage with treatment, require them to attend, require them to go. The leverage you have at present is that you are financially supporting her, you have the option of withdrawing that support, or more to the point can require that she follow your rules to continue it. 

You could also discuss with her team the option of compulsory treatment, though from what you are describing she may need to be a lot more unwell before she could be legally mandated to have treatment. It is for this reason that some many parents have had to resort to using their leverage. It is almost impossible to talk someone into having adequate eating disorder treatment at this stage of the illness. 
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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Frida
Valentina- I’m agree w you abt dietician. The hospital told us we would need to continue w one once my d. went home. The one we used had worked at the same hospital program that my d. just came from. I felt that the exchange thing reminded me of Weight Watchers, which I am convinced makes people food obsessed. Aside from weigh-ins, and food journals, I didn’t see anything productive coming from their meetings, and it was $. 
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Kali
Hi Frida,

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She has to want to recover, and she sometimes wants to, but not always.


If I had waited for my daughter to decide that she wanted to recover, I would still be waiting. 

Parents have found that weight restoration, whether it happens in the hospital or at home, is key to helping a loved one start the process towards remission of the illness. As Foodsupport points out, most of us have had to require that our ill children engage with support and that they start eating again. So I would urge you not to place any importance on whether she wants to recover but to take matters into your own hands and make sure that she is being treated and that you are feeding her as much as you can at the moment at home and that you work out a plan for her to be weight restored. Based on the bmi you described, around 15 something, she really does need to be under frequent medical observation and very likely may need to be re hospitalized. 

I'm attaching a pdf with the medical guidelines for Anorexia for you to take a look at. 
Some quotes from the brochure:

 

Quote:

Individuals with an ED may not recognize the seriousness of their illness and/or may be ambivalent about changing their eating or other behaviors

Patients with EDs may not acknowledge that they are ill, and/or they may be ambivalent about accepting treatment.This is a symptom of their illness. Patients may minimize, rationalize, or hide ED symptoms and/or behaviors. Their persuasive rationality and competence in other areas of life can disguise the severity of their illness. Outside support and assistance with decision-making will likely be necessary regardless of age.



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She works in a restaurant and would tell us that she ate at work when we didn’t see her having dinner. She would say she ate lunch at school, or went out w friends for meals. 

My d. did the exact same thing. 
We later found out that she had been running out of the house in the morning without eating, skipping lunch and then not eating at work but telling us she had eaten there. Or telling us she was supposedly having dinner at a friends house.

We are here for you and hoping for the best for your daughter.

warmly,

Kali
Food=Love
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Torie
Frida wrote:
 She weighed 104lbs at 5’8.”  We think her ED started back in April, or at least, that is when it became noticeable to us. She went from 132lbs to 104lbs within a 5 month period.

As you probably know, she will need to regain all the weight she has lost, at a minimum.  Many here have found that the restricting started earlier than we realized - my d is also 5'8" and 132 would most definitely not be enough weight for her.  Of course they are all different and it is possible that 132 WAS enough for your d; I'm just noting the possibility that she might likely need to go higher than that.

An unfortunate complication for us parents of tall girls (or boys) is that the BMI calculations/expectations are especially flawed for them, making it look like the "healthy" weight is lower than it really is.  (In other words, your d at BMI x will be thinner than a shorter girl will be at that same MBI x.  It's a mathematical thing - can google if interested or we can talk about it if anyone wants to.)

Please feel free to ask all the questions you like. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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ValentinaGermania
Frida wrote:
Valentina- I’m agree w you abt dietician. The hospital told us we would need to continue w one once my d. went home. The one we used had worked at the same hospital program that my d. just came from. I felt that the exchange thing reminded me of Weight Watchers, which I am convinced makes people food obsessed. Aside from weigh-ins, and food journals, I didn’t see anything productive coming from their meetings, and it was $. 


So then stop that. You pay, you set the rules! You know what a normal young woman needs to eat. You fed her her whole life up to ED moving in. She does not need to see a dietitian.
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
Frida wrote:
 The hospital told us we would need to continue w one once my d. went home. The one we used had worked at the same hospital program that my d. just came from. I felt that the exchange thing reminded me of Weight Watchers, which I am convinced makes people food obsessed. Aside from weigh-ins, and food journals, I didn’t see anything productive coming from their meetings, and it was $. 


There is no doubt that any accounting for food intake, food journals, exchanges, or calorie counting all end up causing there to be a focus on intake. Most adult programs do use some form of accounting system to use as a baseline for eating. The down side is that it causes there to be even more focus on food and quantities. As Tina has mentioned one of the other options is for you to feed your daughter in some form of FBT style treatment. This way you take the focus on the food and quantities and not your daughter. It would however require you to not necessarily take you D's wishes into account. 
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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