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

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I guess I can start with my question, I have read about re-feeding, but what if the person is so restrictive that they won't eat, other than one tiny meal per day?

My daughter is 26 almost 27. At the end of 2015 she started to become very anxious about work, striving for perfectionism. It seemed too that she was experiencing some bullying in the work environment she was in.

She left her job and began to be obsessed with food and so called healthy eating, she took a job with a healthy eating guru as this person's PA. She became very anxious about her job and began overexercising, at this time she was eating a lot, an excessive amount but always healthy food. The over exercising became self-punishment.

Then along came OCD with strict and severe routines, especially at meal-times, she was plagued by panic attacks and began using alcohol to self-medicate the anxiety and the routines associated with the OCD. 

During 2016 she was drinking excessively, the OCD was severe and she began to obsess about her weight, on a Friday evening we would go through extreme levels of fear and self-loathing around should she eat or shouldn't she. The fear was because she had set herself a weigh in on the scale for a Saturday morning and the resultant figure on the scales would colour her entire week.

At this point she would prepare elaborate meals and save left-overs, like a hoarding of the food, she would seem to resent others sharing food with her.

Suddenly, it seemed, she began to restrict her food intake. When she ate she would continually ask 'have I eaten too much', it was clear to see the internal battle going on within her.

During 2017 she continued drinking alcohol, the OCD routines remained and were severe around food. She was rushed to hospital in May 2017 due to a seizure as a result of drinking too much water causing low sodium levels. 

In 2016 and 2017 she was permanently drunk. In 2018 the drinking lessened for a while, she isolated herself in the bedroom and struggled to eat being so afraid of gaining weight. By March 2018 she was having difficulty feeling her feet and by April she was diagnosed with peripheral neuropathy due to malnutrition, she had to begin using a wheel chair in the May of 2018. 

The OCD is nowhere near as bad as it was but still there, the Eating Disorder is much worse, she is so restrictive in what she will eat and terrified of overeating and gaining weight. She still uses alcohol but it is not as bad as during 2016 and 2017. She believes that she does not deserve food. 

She is now severely underweight and disabled. I can see the struggle within her that she wants to eat and is afraid of eating.

We have tried to access resources but she being an adult means we are reliant upon her wanting and accepting help. She believes she can resolve this herself and indeed she has progressed a long way in terms of the OCD and anxiety without external help. 

We have found that because she has a number of issues all at once she is passed from pillar to post. And it is hard to know which came first, although with some hindsight and things she herself has revealed it would seem the eating began with bulimia when she was around 14. Although I can also see that this is all rooted in anxiety and especially perfectionism and wanting to be in control in order to achieve the perfectionist standards she sets for herself.

I understand that restricting eating is an attempt at control.

I don't really know what to ask for here. I want to know that she can come through this, that it is possible. 

We can't make her eat. At what point does it become life threatening?

And it it does, what to do about it.

At present she is being monitored weekly by her GP/MD.

She is under the care of a neurologist. And just two weeks ago began seeing a Neuro Physio for the neuropathy.

It's a terrifying horrible mess that is affecting all of us, and it's destroying me, why me so much I wonder, she takes things out on me (her mother) more so than anyone else. Also between she and I we are almost mirrors of each other she tears me to pieces and it hurts, I understand from an Eating Disorders charity here in the UK that this is the ED talking, and I agree as I've always known it is not her, but it is debilitating. I try to stay calm in myself and get on with other things I need to do but this situation is literally with me every waking moment, clearly it is much worse for her.

Anyway, thank you for the space to express and any input is welcomed.

Thank you.
Hi Stephanie144,
I welcome you to the forum. I hope you find the information and support you need. 
I don't have an adult child but many do. I know they will be here soon with ideas and their experiences.
Please read around the forum there are many resources.
F.E.A.S.T website 

It sounds quite stressful at this time. I do hope you take care of yourself too. Is your D willing to get help? 
It is typical that she is afraid to eat and it is eating that she must do. Is she living with you? Can you support her with meals, and sit and literally feed her despite her objections? Has she seen an eating disorder team of specialists? I think that would the best first step.
We all know how hard it is, it is excruciatingly painful to everyone in the family. 
Please let us know how we can help. Ask all the questions you have. 
We really want to help in anyway 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)
I have no advice except to say that it’s not rare to see women who suffer from alcoholism, also have an eating disorder.  I know you said that your daughter’s drinking is no longer as bad, but I wonder if she has ever tried a 12-step program like Alcoholics Anonymous?  They definitely address the whole delusion of control and perfectionism.  A support program like Al-Anon may also be of support to you. 
Hi Stephanie and a very warm welcome from Germany from another mom of a young adult d with ED (19).
First questions: is she living with you? Is she financially dependend from you? Who buys the food and who cooks?

It is much more difficult with an adult but not hopeless. You have some power left. Many parents here have a contract with their adult "kids" about what they do for them and what the "kids" need to do if they want to live with their parents. If she lives in your house you can set rules for that.

When does it become life threatening? That is really a difficult question. Some get serious heart problems without even being underweight just by malnutrition. It is common that BMI below 15 gets really dangerous. Below 12 is life threatening. But they can die on a BMI of 17, too.
Is her blood and heart monitored? Orthostatic blood pressure? Can you talk to the GP and tell him you are concerned about her medical safety?

If she is not eating for more than 48 hours at all or not drinking for 24 hours that is a case for ER.
If she is faiting or dizzy that is a case for ER.

I do not know how that is in UK but here in Germany patients can be send IP against their will if their is medical danger. I think I heard that there is something like that in UK, too. Ask for that.
Keep feeding. There is light at the end of the tunnel.
Welcome to the forum. 
You ask when does it become life threatening? I would answer now. Your daughter is so unwell she is confined to a wheel chair with nerve damage from malnutrition that is not being treated because she is so scared to eat. Her health and life is at risk, the only question is the immediacy of that risk. People can die from an eating disorder at any weight, including higher than average weights. It all has to do with what else is happening in their bodies. Purging and alcohol just increase the risks. 

There is no doubt that managing things with adults is much harder than managing younger children. They often don't live at home and are I think even more independent. Further they often have the resources and independence to leave whereas teens don't. 

In the UK I think it is especially hard as there are poor resources available, it is very area dependent and as you say there is a strong emphasis on consent and agreement to treatment, but a very poor knowledge and understanding of anosognosia along with poor understanding that wanting treatment and compliance with treatment are not the same thing. 

The book mentioned above - Skills based learning for caring for a loved with an eating disorder is excellent at helping you work with an adult. She may want to do this herself, they often do, but the fact is that few recover from an eating disorder without assistance and support. 

There are guidelines for care in the UK. Making sure they are followed is a useful step and that she is getting appropriate investigations and management. Helping her to make a plan to get into treatment and support her to stay there - are things you can do. She is fearful of being backed into a corner. 

These are UK guidelines for care  https://www.rcpsych.ac.uk/docs/default-source/improving-care/better-mh-policy/college-reports/college-report-cr189.pdf?sfvrsn=6c2e7ada_2 and this is a UK checklist based on these guidelines  https://www.rcpsych.ac.uk/docs/default-source/members/marsipan-resources/eating-disorders-cr189-checklist.pdf?sfvrsn=d6ce3bb1_2

Noting the check list is she now taking regular thiamine? - excess alcohol and malnutrition are both risks for thiamine deficiency which causes neuropathy.
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
Thank you all for the welcoming and supportive posts.

Hi Scaredmom, you asked if she is willing to get help, and I guess the answer is yes and no. Yes if it is on her terms, no if it is not, and it is not on her terms if it involves intervention with her eating. She was turned away by the ED specialists because of her very low BMI, her GP has gone back to them and arranged for someone to come and see her, when this will happen I do not know. She doesn't live with either of us but we are making sure that one of us supervises at least one meal a day.

Thank you mimi321 for those two links, the helpkit is particularly useful.

Hello Anne_D, thank you, I struggle with the term 'alcoholism' especially in connection with OCD, anxiety and eating disorder, many of the things I have read and heard including in an assessment at the Maudsley (UK) say that people do not self-medicate with alcohol without good reason.

This all seems very much a chicken and egg kind of situation, the alcohol consumption, the ES, the OCD which is it. She was in hospital as an emergency in 2017 with low sodium levels that caused a seizure. We accessed alcohol services and mental health whilst she was in the hospital, mental health said they would not work with her until she stopped drinking the alcohol service had no understanding around her anxiety and the OCD. I went to a couple of Al-anon meetings and spoke with their help line, they said they did not have anything to contribute regarding the OCD and the people I met were talking about how they can do nothing and to let the person wake up to their alcohol problem themselves.

The OCD support service I accessed had nothing to offer re the alcohol. The only place it seemed in the UK that takes a holistic approach is the Maudsley (same Maudsley as the method) we finally got a referral to their Centre for Anxiety Disorder and Trauma, at that time we had seen the OCD as the main problem knowing though that food was an issue, so we saw the OCD team. Unfortunately they felt unable to help her. With hindsight a referral to the ED team would have been better.

Now it is evident that the ED is the focus and at least during the assessment with the Maudsley she revealed that she had been purging as a teenager, I did not know this, she would spend a lot of time in the bathroom as teenagers do.

So that lets me see that the ED is the main factor, or at least I think so, reading the helpkit booklet I can see that she exhibited first Bulimic behaviours, then Bulimia Nervosa with the excessive eating and overexercising that corresponded with the development of the OCD, now it is Anorexia Nervosa.

Hi Tina72 thank you for the welcome, she is not living with either of us, she is financially independent in that she is now receiving disability benefits which she organised herself. She complains though of not being able to afford food which is not true, we take food to her and make sure she has at least one meal a day. The food we take to her though stays untouched and ends up being thrown away.

Thank you Foodsupport_AUS lead moderator. I know in my heart you are correct in your answer to my question. She stayed with me for four months during the summer last year, gained weight and became more sociable after being isolated in her bedroom before that. Since then she has lost weight. Why the change I do not know.

Unfortunately it has been our experience that the resources in the UK are limited and the focus on consent is very difficult to navigate.

Thank you for those links, alarming that she could end up in a worse situation in a general hospital although not surprising. 

The Neuro Physio had mentioned a residential place in Oxford which I believe is Cotswold House, looking at their site she meets the criteria for referral. Back to her GP then, I think though that he does not quite realise the severity of her condition, her face looks normal and she covers up with baggy clothes, she also avoids being weighed by being unable to stand. She needs sit down scales but these are only available (so far) at a hospital thus there is the wait for an appointment etc. 

It's obvious that she is in the <13 BMI I'm just not sure the professionals can see that.

Anyway, thank you to everyone.

Sorry, I meant to add, during last summer she was taking Thiamine and other B vitamins, prescribed. I do not know what the situation is now. She won't say and it's hard to know when she is telling the truth.