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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Cecilia
Hello, I am totally new around the table, writing to you all from Sweden. Are there any other Swedish people here? A lot of what I read seems to be about the treatments you get in other countries, although I haven´t yet read all that much yet. But anyhow, I am so grateful to have found this forum, I cried when I found it! This is a living hell, and to hear the voices from other parents is heart-warming, I feel very lonely in this. My english may be a bit strange sometimes, I hope you all get what I mean anyway 🙂

I am a single mother of a daughter who is turning 19 this October. She still lives with me but is planning to go to the university this autumn and hope to find her own place to stay. She is suffering from anorexia/orthorexia since about 1.5-2 years now, and is constantly loosing weight. She tells me how she and her PT at the gym are working on getting her back in weight, but I am not seeing that happening, she keeps loosing weight. Her fat mass is now approximatley 13% according to a body scan she did with her PT.

I have managed to get her to call a doctor tomorrow to run some blood tests, and I am hoping for some kind of referral, but she is very determined that she doesn´t need or want any help. The paradox is that I am actually working as a CBT-psychologist, and have worked with different types of ED:s over the years. But I can not cure my own daughter! I also have a special interest in working with OCD, and with my daughter there are so many similarities! She is very strict on what and when she eats, her daily routines etc, and nothing can go "outside the box". She has always had that personality trait, but not to the extent of being on an autism spectrum in my opinion. But the thing is, the deeper she gets into the disease the more it kind of resembles autism, can anyone recognise that?

I will go with her tomorrow to the doctor, and will try to get us a referral to a specialist, but since she is above 18 it is up to her in the end.... Keep your fingers crossed for us (I hope that expression translates well). Thank you for being out there, and all my love and best wishes to you all.
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Ellesmum
Hi Cecilia, 

your English is flawless and easy to read 👍 

Yes the rigid behaviour is very common as are OCD tendencies,   the brain changes with malnutrition and thought processes change hugely resulting in loss of logic and rational thought plus low mood and anxiety. 

Its also normal that they insist they don’t need help, the ED feels like a best friend albeit a cruel one.  Full nutritional rehabilitation is key here, I’ve no idea what Swedish services are like but I seem to recall another Swedish parent was here not so long ago, if you do a search for ‘Sweden’ you may find some helpful posts. 

My fingers are firmly crossed for tomorrow, best wishes 
Ellesmum
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sandie
A big hug from me Cecilia. I know how lonely and hellish this can feel, and how important it is to find other people who understand. I am glad you have a plan for tomorrow to seek help and i keep my fingers and toes crossed for you. Xxx
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Foodsupport_AUS
Welcome to the forum, sorry you have had to find your way here. Yes we have had some parents from Sweden but not very many. 

As Ellesmum has said, it is really common and expected for someone with AN to deny the existence and or the severity of their eating disorder. It is also common as the malnutrition sets in for increasing rigidity, OCD behaviours and thoughts. There is a strong relationship between AN and autism spectrum disorder with a higher incidence in sufferers of ED, but also many children with AN seem to be "more on the spectrum" when ill. I wondered about my own D when she was at her sickest and wondered if I had missed things, but as she is recovering it is clear this was the malnutrition, as was her OCD behaviour and depression. 

Getting her assessed is the first thing. It is much harder to get things going with her being an adult, and I am not sure what services will be available to you. For her health she should stop her personal training, the risk of sudden cardiac death will malnutrition is real. To get her into treatment, many of us have had to resort to making it impossible to avoid doing something- withholding financial support can be useful. 

This is an Australian Clinical practice guideline for care of eating disorders. The most useful part for you is at the end - it discusses assessment, and investigations. Most doctors world wide have poor education in eating disorder, their presentation and treatment so bringing details along of what you have observed and information on what you want as next steps can be really useful and help you get help faster. https://www.ranzcp.org/files/resources/college_statements/clinician/cpg/eating-disorders-cpg.aspx
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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Enn

Hi and welcome!

I do hope you get the information and support you seek. It is a lonely journey dealing with ED in the home. 
As others have noted the OCD traits are very common and when my d was quite malnourished it was really bad. It does get better with a lot of weight in most cases. 
 She does need a medical assessment. The guidelines posted above are good to have on hand as Foodsupport notes. I do hope the appointment tomorrow goes well. 

Was she ever under a specialist's care in the past? Was she better in the past? You note it has been 1.5-2 years. Just asking about previous treatments that may have helped in the past, that you could utilize now?
Please ensure that the doctor performs orthostatic blood pressure: lying for 5 minutes take blood pressure (BP) and heart rate (HR) and standing for 5 minutes the same. If there is drop of 20 mmHg of the top (systolic)_ BP or 20 of the bottom number (diastolic) or and increase in HR by 20, she may require admission to hospital as that  is a marker of cardiac instability.
 
I agree that the exercise may have to stop immediately as it will drive her pathological cognitions too. 
I have a young teen d with ED. I understand that the challenges with adults are very different. Many have withheld financial support for phones, cars, university to get their kids to treatment. 

Your knowledge and expertise will serve you well as you will understand, but you are a mom first. So please don't hold the burden and responsibility of treating her on your shoulders. Your position is unique in that you understand the system and what is required from the specialists. Please take care of yourself too.
You are not alone. Please ask all the questions you have. We do wish to help in any way we can.

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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Cecilia
Thank you all for your kind and loving support (again my eyes fills with tears)! It is true that many GP:s don´t have enough knowledge about ED even to perform the right tests. I have thought about givning them a list of the tests I would like them to take, but know from experience that it is not always approved by the doctors when patients and their relatives come in with more knowledge than them selves. I will try to get the requests in there in a smooth way...Thanks also for the advice on blood pressure to look for cardiac instability, that is one of my main worries. I wish I had been more restrictive about money, she has received a lot both on her 18th birtday and also when she got her exam in June this year. She also works hard this summer earning more money, so that tool for motivation  is now gone I´m afraid. I can only hope for a good meeting today and a referral. Thank you again for being supportive!

I notice many of you have a quote at the end of your posts. Here is a favourite of mine:

"When going through hell -keep going!"  /Churchill
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ValentinaGermania
Hej and a very warm welcome from Germany! I am so sorry that you need to be here but also glad that you found us.
Here are a few members from Sweden but not regular posting I think but maybe you encouraged some with your post to post now too.

I am a mum of an also 19 year old d. We are in year 3 after diagnose now and did FBT for 2 years now and my d is in good recovery and at university since last October but with some rules and a relapse safety net.
I want to say something about that.
"But I can not cure my own daughter!"
YES, YOU CAN!
FBT is mostly work of the family/parents. If you are a therapist you can easily read and understand the FBT manual and work that down with your d. It is not too late. She is not too old for that. You are the most important person that is able to help her to get better. What you need is information, a plan and then you could start. We are all here to help you and to support you and to answer all your questions.

She will not get better when you leave her in that malnurished state with all the eating rules and restricting and the weight loss. AN is a metabolism disease. As long as the brain is malnurished she does not get better. It is all about food and nutrition.

Please come back to ask all your questions.
Keep feeding. There is light at the end of the tunnel.
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melstevUK
Cecilia,

A big welcome to you.  Have you been in touch with the PT?  You need to speak to him/her immediately and explain just how ill your daughter  is.  Do not worry about confidentiality or upsetting your d.  Your d will probably fly into a rage but this is to be expected.  As soon as you start hitting back at the illness you will see the dragon lurking underneath!

I can say from experience that it can be very difficult as a single parent getting on top of re-feeding because a battle one to one is more difficult than if you have other people giving the same message.  I hope you can get her under specialist services so that she will be getting the same message that reversing the weight loss has to stop and weight has to go back on from someone else.  Exercise may have to stop altogether, but if you can get the PT to understand what is going on he/she may be willing to offer you some support in changing her regime and ensuring weight definitely goes back on.  She may well be lying, in any case, about her discussions with the PT.

You may find it helps to be brutally honest and say that unless she takes on board just how ill she is, she will not be able to go to university and instead will eventually end up in hospital.  Denial is all part of the illness unfortunately.  So if you can use your communication skills to get this message across in the kindest and most effective way, this may be a start.   There is no recovery without weight gain unfortunately - and the weight has to go on first to allow the brain to start recovering and for thinking to change.  It is a hellish process but we are here to support you every step of the way.
Believe you can and you're halfway there.
Theodore Roosevelt.
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ValentinaGermania
I just want to add that although they are legally adult you CAN do something and you have some power left if they are financially dependent from you (and they are in most cases at that age).
We made a contract with our d that we pay for living, car, phone, insurances, university and all but she has to do something for that. She needs to stay healthy (we are in year 3 of recovery now), go to the weighings, see GP regularly, maintain her weight and eat 3 meals 2 snacks each day (she still needs a lot of calories to maintain weight due to a super metabolism), talk to us and keep us involved in medical desicions. Many parents of adult kids have that here and I think it works well in most cases. We also had rules to start university last year (only half schedule, eating at home at least 3 days in the week, eating lunch in the cafeteria the other days and so on).

As long as you pay the bills you set the rules. That is a great incentive and a great boundarie.
Keep feeding. There is light at the end of the tunnel.
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sk8r31
Hej from me as well.  Not Swedish, but lived in Stockholm for a few months while hubby was on sabbatical years ago.  Sorry you have a need to be here, but glad you have found the forum, and hope that the peer support will be helpful to you.

We have had a few forum members from Sweden, and one that I remember is MamaEm.  She has not been on the forum for some time, but you can do a member search at the top of the page, and should be able to see some of her posts, and be able to send an email if you wish.  

It can indeed be a challenge to support a young adult with an eating disorder, but as mentioned, you are able to speak with your d's medical providers to let them know your concerns and observations, though they can not share info with you without your d's consent.  

As tina mentioned, any leverage you have, financial or otherwise, can be helpful in getting your d involved in treatment.  Ask any questions you may have, and we're here to support you in whatever way we can.

Sending warm support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Enn
Hi Cecilia, 
Just reaching out and wondering how the doctor's appointment went.
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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teecee
Welcome Cecilia
my D is financially independent from us too which could make it difficult in the future if she began going backwards with her recovery. 
We found that identifying her motivation helped with recovery. Early on it was wanting to have a ‘normal’ life by attending a new college and meeting a new social group. The motivations have changed slightly as we have gone along but she is very motivated to go to university next year. We know she could fund it herself but I have told her I will contact the Safeguarding Team at uni with a view to her being stopped from attending the course if she gives up on her recovery. Hopefully it won’t come to this as she has gained so much in her life since the dark days of refeeding. 
No matter what age they are still our kids and we can influence them. I try to remind myself that if it was cancer there’s no way I would let her stop receiving life sustaining treatment. 
Virtual hugs xx
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ValentinaGermania
teecee wrote:
I try to remind myself that if it was cancer there’s no way I would let her stop receiving life sustaining treatment.


Could not have said that better. That is really the important thing. If it was chemotherapy instead of food you will do ANYTHING needed to make them live.
Keep feeding. There is light at the end of the tunnel.
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Cecilia
Hello, and thank you scaredmum for reaching out, and for all of the support you all give! I have been feeling a bit guilty for not being more active in giving support back, and felt as if I just dropped in here and took what I could get and left again. But I have not left, and I hope to be around more to also be supportive to others. Right now things are tough...The doctor wanted to give her the referall to a specialist clinic. But my D still refuses. She wants to do a follow up with her PT in three weeks, and see how that goes. If he recoomends treatment she says she is willing to try. Luckily I have contact with him (she does not know), so I will ask him to be more convincing about treatment. In the meantime I will just try to wait and have faith. She says she is trying to gain weight but I dont see any signs of that whatsoever. She only eats what is planned in advance and weighs all her food. She eats alone in her room. Normally I sleep well, but nowadays I have so many nightmares, and I wake upp several times and lay awake a lot. I am feeling dizzy and shaky in daytime. How do you cope with this? I know it´s probably horrible to say, but. I actually wish it was cancer instead so we could fight it together! Given the actual choice of course I don´t wish that....
Feeling blue today
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Cecilia
Another thing about this crazy world of ours, the other day my daughter was approached by a man from a model agency. He said he wanted her to come and work as a model, and that he thought she "looked cool". I will write to that agency and ask them about their policys regarding ED among their models! She is clearly very ill, no bodyfat, pale face with grey/blue lips. She does not look cool! 😤
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ValentinaGermania
Cecilia wrote:
Another thing about this crazy world of ours, the other day my daughter was approached by a man from a model agency. He said he wanted her to come and work as a model, and that he thought she "looked cool". I will write to that agency and ask them about their policys regarding ED among their models! She is clearly very ill, no bodyfat, pale face with grey/blue lips. She does not look cool! 😤


Please do that!!! We can only change something when we change their thinking. It is unbelievable that they ask a person that has a life threatening disease to model!
Keep feeding. There is light at the end of the tunnel.
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ValentinaGermania
Cecilia wrote:
Hello, and thank you scaredmum for reaching out, and for all of the support you all give! I have been feeling a bit guilty for not being more active in giving support back, and felt as if I just dropped in here and took what I could get and left again. But I have not left, and I hope to be around more to also be supportive to others.


Nobody here thinks that about you. Nobody. Come around when you need it and we will try to help. There are times when we do not have power to post and that is totally o.k.

Cecilia wrote:
She says she is trying to gain weight but I dont see any signs of that whatsoever. She only eats what is planned in advance and weighs all her food. She eats alone in her room.


This needs to stop. She will try but she cannot win that fight against ED, no matter how hard she tries. To eat what is planned in advance is o.k. A meal plan is good if it containes enough food (at least 3000 calories a day to start in refeeding). But she is not allowed to prepare, cook or weigh her food. That is not normal. If you are in contact with her PT ask him for FBT and if he could tell her that she needs to eat what you serve.
I would also not allow her to eat alone in her room. That is not normal and that feeds AN. She must eat with you together at the table. She can eat in her room but then you should join her and eat there as well.
You set the rules. You just need to dare to do that. Normal eating is required. No ED behaviour. The longer it takes the harder it gets to get rid of it again.

Cecilia wrote:
Normally I sleep well, but nowadays I have so many nightmares, and I wake upp several times and lay awake a lot. I am feeling dizzy and shaky in daytime. How do you cope with this? I know it´s probably horrible to say, but. I actually wish it was cancer instead so we could fight it together! Given the actual choice of course I don´t wish that....
Feeling blue today


Oh, I so remeber those nights. I also remember that thoughts about cancer. To be honest, I sometimes wanted to get into my car and simply drive away and not come back. How do we cope? Distraction (same as with your d). Meeting friends. Self care. A lot of self care. It is a marathon and not a sprint we say here. You need power for a long distance. Hope helped me too. To talk/write with mums that have gone through that. That have recovered kids now. That told me that it will get better when I keep going and fighting.

How can we help you?
Keep feeding. There is light at the end of the tunnel.
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Cecilia
Thank you! I cannot express what this table means to me right now. You are so right tina72, I should not allow her to eat in her room, I am gonna bring that up with her. having the support from all of you gives me strength 🙏
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kazi67
Cecilia
im so sorry to hear of you d and the worry it is causing you 
my d is 20 and I understand totally the difficulty as they are considered adults and we can’t “force” them to do anything really

isnt it criminal that PT do not have guidelines or duty of care to follow if a client isn’t well, my d was in the dance industry and I found as she was talented the teacher wanted her to perform as it gave her a good name (surely you would think the dance industry should have a “duty of care” or even knowledge of ED/AN, same as PT and obviously the modelling industry it’s no surprises there)
i wish for all sport/exersize industries to be regulated/educated in the future so many lives are suffering because no one seems to be getting the information on how very damaging this illness is!!
majes me very angry!

if you you can try to keep open, honest, caring, communication with your d, you can convince her to get the assessment she needs 

thats what we had to do in the end with my d to get the expert help she needed 
I had to be very tactful, get on her side, made appointments first then convinced her to go

im no expert and there’s no easy answers but I am feeling your pain
i hope your dear d can get the help she needs
hugs xx
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Enn
Sending a big hug! I am glad you have an open line of communication with the PT. Let them know your concerns and it may help to give them some literature on ED too.
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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ValentinaGermania
Cecilia wrote:
Thank you! I cannot express what this table means to me right now. You are so right tina72, I should not allow her to eat in her room, I am gonna bring that up with her. having the support from all of you gives me strength 🙏


This forum here is a life saver. I would have lost my sanity without it.
Do not discuss that with her. Tell her you require her to eat with you in the same room and at the same table and let her chose which room 🙂.
Try not to negotiate with AN. You can only lose that war. Give her two alternatives that are both what you want and what is normal so she can believe she can at least chose something 🙂.
Keep feeding. There is light at the end of the tunnel.
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