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Archive for the ‘Maudsley Approach’ Category

(… or reflections on our anorexia journey)

The uni break went so quick. One minute she is home, next minute gone. lol, well almost. She went back earlier, so excited for the new unit, then realised she was back way too early and desperately homesick this time. She came back home, instead of toughing it out. She said she had a much better chance of not falling into depression or anxiety by coming back home. As always I observe everything she says and does. Sophie’s maturity surprises me to the level she has achieved (within a mere several months), her insight and empathy (so apparently missing) is finally blossoming. Doesn’t mean she was always calm and not hysterical at times, but a definite switch. Before she went back, the aspie side of Sophie was all organised. Doctor appointments made, counselling appt made, new referral appt with ED specialist made, classes sorted, disability needs sorted. She just ploughed through it all. This is the plus side of having aspergers.

The new ED specialist is more of a counsellor but has the insight and understanding of what having an eating disorder in your past means for you presently and how you relate and cope with life. Whilst Sophie has to travel to this centre, I am pleased she has taken this on board as an extra coping and learning tool.

It is also time to start weaning her anti-depressant medication. Five years is a long time to be on the medication, and now is the time to slowly (painfully slowly) wean her off and see how she responds.

For me it’s been a time of great reflection. 5.5 years into this, 5 years from diagnosis, 3.5 years from full weight stabilisation, 1-1.5 years with no anorexia behaviour or thoughts. It’s been an amazing ride, that only those who have been here know how crazy, mixed up, painful, the intense highs and the intense lows. Moving from small picture, every moment, every day stuff to big picture stuff that encompasses months. Being part of a new parent support group too, has been part of this reflection. I have had to think back to the very beginning, remember things I thought I had put away forever. It’s actually been a painful journey for me, but it has honed my thoughts and beliefs about eating disorders and taught me to be far more articulate and to advocate on a higher level.

Thought I would put together a summary – seems a timely thing really.

our anorexia journey

Biggest Mistake
* under estimating how long, painful and soul destroying this journey is
* feeling guilty that I had somehow caused this

Biggest Misunderstanding
* that we could get through this in a couple of months – not years

Biggest Regret
* not demanding more from the health system around us or challenging the wrong beliefs at the time

Biggest Fear
* wondering if at times I could continue to care for her
* her dying before we could turn this around into recovery

Biggest Lesson
* how quickly you go from health to critical and in a hospital bed
* how you can never never negotiate with an eating disorder
* your child is totally separate to the eating disorder behaviour
* comorbid illness are a part of eating disorders and make the struggle to recover harder and can become a part of life afterwards

Biggest Myth
* you don’t have to be skeletal to have anorexia
* relapse is a valid and normal part of recovery not something dangerous, fearful or not normal
* tube feeding is not a shame or psychological issue. Not now. Older women struggle with this and parents have their own hangups about this. The reality is very different for those in their teens who are tubed fed.

Biggest Support
* those I met going through this journey who were travelling it too
* having an amazing, strong, recovery focused team of five professionals

Biggest Surprise
* the inner eating disorder voice in my daughter’s mind. Like getting to know the devil himself.

Biggest Problem
* health professionals who still do not know how to diagnose or treat eating disorders
* the lack of resources (both money and treatment) for parents and sufferers to access to get treatment and recover.
* the different approach, government understanding and health systems in each country that actually hamper treatment when the illness itself is the same regardless of country.

What I did Right
* early detection, early intervention
* standing with her despite the horrors of the illness and behaviour and walking with her to recovery

What Benefits Did We Gain
* obviously my daughter’s life and health but also gaining a deep, close and open relationship with my daughter
* gaining some wonderful new friends who truly understood and still stand by us
* an intimate and highly experienced understanding and knowledge of eating disorders that we can share with others

What Did We Lose
* the years my daughter cannot get back of her normal growing up time with her peers
* friends

Before Anorexia
* my daughter was anxious, highly strung, a perfectionist, a misunderstood kid with her peers
* I thought I had a plan mapped out for some kind of normal existence like every other family raising teenage kids
* I thought I was already a strong mum because of domestic violence.

After Anorexia
* my daughter knows herself so well compared to other kids her age. Whilst this is a plus it is also a negative, as she struggles to find a close friend
* I learned I am stronger than I thought, I learned a deeper side of me, and I learned the dreams I had no longer ‘do it for me’. I search deeper.
* I am still finding who I am now, I no longer want the same dreams. I still struggle to find my way around a kitchen after so many years tied to anorexia cooking and preparation.

The Blog Role
* ended up being far more than I ever thought, and gained me so much privilege to talk to others on all levels in this journey. Thank you!

What would I do Differently
This is very personal. It would be to leave our dysfunctional family domestic violent life instead of waiting til further into recovery. I had planned to leave just before my daughter started down the slippery slope. I thought (wrongly) that staying might have been better for her health. It would have given full FBT a better chance and a safe environment that had no anger, expectations, eggshells etc in it.

Family Based Therapy
That eating disorder recovery is NOT a one-size fits all. Despite the best statistics, FBT (Maudsley, FEAST, FBT types) don’t always work for some families. This is not a point to be guilty about or feel like you have failed. It just is. Means you just go and find what does work for your family and how to care. As long as there is forward progress into recovery then you are going great with whatever you are doing.

Families are not to blame
I will keep saying this shouting it from everywhere. Eating disorders are genetic based. Families do not cause eating disorder and are not to blame for an ED developing.

Overall
My faith took a pounding, became far more realistic and more honest. Like David I adore but I will question and ask.

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Been called the Food Police yet? Had people go say how belittling or punitive the approach is?

Hold your headup and don’t let ignorant comments make you feel you are not doing your son or daughter any favours.

Refeeding at home for eating disordersLet’s remove the myths. Firstly, you are not the Food Police. The ones who say this view it through their own circumstances and teenage rights. If their child was sick with some illness they would oversee the medication taking and other treatments to ensure wellness occurs. These same people do not see that for someone with an eating disorder – and in particular anorexia – food is the medicine and the treatment. It is critical you get your child to eat and the only way to face down the fears and irrational thinking that anorexia has, is to have rules around food eating and to sit with them whilst they eat. Left to their own devices, those with anorexia do not eat or eat so little they continue to endanger their life.

Secondly, it is not belittling or punitive. The emotional role of the parent/carer is to encourage, uphold, strengthen, love, etc. It is being firm but loving. As far as I have researched, all relationships that undergo this stage of refeeding end up healthy and strong. Your child may say they hate you during the refeeding and fight back, but once weight is restored and they continue with recovery, they love the fact you stood by them. That you persevered and believed in them and their life. Actually neither is a NG feed punitive or belittling. It is medicine and if your child is that sick and still will not eat, then take the NG lifeline that is offered. Your child gets to live and fight this on another day.

Thirdly, you are removing a basic right and independence of your child. If your child ate normally yes you would be. But your child is so under the control of the eating disorder that normal, rational, logical eating doesn’t happen. They can’t eat nor take independent and appropriate control of their eating. The early stages of refeeding needs to have someone there to help and support them as they learn to eat and fight back against the control the eating disorder imposes on them. As later stages of refeeding occurs, the parents start to hand back the independence and self-monitoring of eating. There is a lot of basic relearning to do be done because the eating disorder wipes out what should normally occur.

And this last part is incredibly important.

DO NOT IN ANY WAY PHYSICALLY HARM OR VERBALLY ABUSE YOUR CHILD.

Incredible? no it really does happen. Some parents threaten, harm or abuse their child because they won’t eat. Yes it does get emotionally fraught and frustrating when you are trying to break down the eating disorder barrier. Everyone has a limit as to how much they can deal with, but in this case, your child IS NOT the enemy here. The eating disorder is and you can’t lash out at it, because your child is the one who ‘cops’ it. This kind of behaviour does not build or strengthen the relationship you have with your child in the long term. Nor does this behaviour establish healing and moving away from the eating disorder. You take your child’s independence and emotional wellbeing away and reduce them to an object. Violence on any level will not heal your child.

I do understand believe me. Sophie was violent, aggressive and lashed out during the refeeding stage. She was very difficult to refeed at home and refused to eat anything other than what she wanted. I would have had to tie her to the table to get her to eat, cause she just kept leaving the table. Or force feed her, because she would not eat no matter how firm, loving etc we were. In the end you have to do what is right for your family and your child. If that means slight compromises til they are able to fight back better against the eating disorder fears and voice, then so be it. It is far far better to do this than to resort to some sort of violence.

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I have lost count of the families who still want the magic fix. You know the one pill solution – “where is the fix they cry”. I understand how they feel, but the reality is there is no FIX. There is no magic pill or treatment. No one stop shop that has the answer.

Research is making progress and yes there will in the future be better outcomes, but not yet nor in the short term future. The complexity of eating disorders will always be there. Research shows that environment, genetics etc all play a part in the development of eating disorders.

mixed eating disorder treatmentsSo treatment becomes a mixed bag.

  • NG feeds, or
  • NG feeds + food by mouth, or
  • just food by mouth, or
  • nutrition drinks + food, or
  • just nutrition drinks, or
  • inpatient then outpatient, or
  • inpatient then therapists, or
  • mix of inpatient and outpatient
  • Maudsley or other FBT
  • doctor/nurse/medical regular appointments

… catching on?

Therapy will be a mix of:

  • dietitian/nutritionist
  • psychologist/counsellor
  • psychiatrist/paediatrician
  • CBT, DBT, hypno, massage, expressive therapy (art, dance etc)
  • journals/diaries
  • meal plans/meal diaries
  • support team/friends/family
  • intuitive eating
  • medication/supplements
  • distraction techniques/recovery toolbox

Personally it is:

  • personal goals/achievements
  • commitment
  • hope
  • honesty
  • learning both the costs and benefits

You may find other ways help you than what I have listed or know of. It isn’t one size fits all. But what is important to know and understand, the mixed lot of therapies and treatments is what achieves recovery. It is a lot of work and struggle to find what works for you or your loved one. But one that is worth it.

Ignoring the ED and hoping it goes away, or hoping someone will give you the magic fix is not going to bring recovery.

Hoping you will be the exception to the rule is also a very rare outcome.

Recovery is real, full recovery is also real. Finding the mix that works for you is what creates and grows the recovery.

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This is a follow on post from the last one on how long you should care for those with an eating disorder. Ever since Sophie’s counsellor asked me to be there to back up things at home when Sophie starts back at counselling I have been giving this serious thought. At first I just automatically said yes, but since then I have been revising my position. Mind you, Sophie has still yet to front for a session. After finding something better to do for last weeks session, today’s one got ditched because the time wasn’t suitable for her, will see if she actually makes next week’s appointment.

Most carers put their own life on hold, particularly if you are doing family based therapy, refeeding at home, or just coping with the all out full-time job of eliminating an eating disorder in the household. At some point you have to pick up the pieces of your life. Start remembering you need to find yourself again. It isn’t healthy for either carer or sufferer to have the close, dependent relationships that exists during high level care. Sufferers need to become owners of their own recovery.

Sophie is no longer a child, and reminds me of that constantly. She needs to have the same space and outlets that a normal 18yr old has, but with a foundation below her though for her high risk areas. It is tricky to balance her right to being independent with the need to keep her safe. However, she now needs to keep herself safe. Make choices and decisions based on what she has learnt about the eating disorder, herself and what she wants for her own future.

People ask how she is at the moment, my response is ‘great weight, roller coaster emotions and mental thinking, that she is irritable and moody’. One response back to me ‘then you must be moody and irritable too’ got me thinking. Yes I am. Sophie’s moods permiate the house, making life miserable for any one near her at times. I am tired of being her emotional punching bag. Her outlet for blame and not accepting responsibility. It is time we separated into a normal mother/daughter relationship and she learns to stand herself. I cannot keep being there and I need my life back.

This means that whatever she discusses with her counsellor, I will listen if she wants to talk. But not take responsibility for it and whatever consequence she chooses to use to deflect emotions. Each time pushing back (gently or strongly as need be). I won’t wear the emotional outfall at all. That gets pushed back. I won’t be her blame or take on the ED talk about I am not doing enough to help her. I have carried her for ages, gradually pulling back as she passed recovery milestones. Now it belongs to her. If she chooses not to eat dinner (like last night), it is her decision. She knows the correct response and now needs to listen to her own voice.

It means I start going out and not being available 24/7. No mother is, particularly those of almost adult teenagers. Every mother has a social life of some sort, plus hobbies, interests etc. I now claim mine back and have already started. This also brings back my confidence that I have lost for so long (well hopefully). I have to out grow the damage the eating disorder has done to me. ED’s never just affect the sufferer. Every one gets knocked down – bit like a bomb explosion as it pushes out. I am no longer a victim of the eating disorder either. It is time for Sophie to also see me as a separate person. She thinks she owns me totally, wanting to know everything I am up to and passing comments. Not healthy nor correct, she also has much of her father’s controlling nature. I don’t aim to suddenly be completely unavailable and not there. That wouldn’t be fair either. Another balancing act but one that moves forward into a normal ,balanced relationship with Sophie – whatever normal is for us.

 

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from NEDC newsletter.

A special issue of the Journal of Family Therapy has highlighted the role of family therapy in the treatment of eating disorders in adolescents, and the growing body of evidence to support taking a family-inclusive approach.

Eating disorders have a significant impact on the functioning and well-being of a family unit. Family processes may also play a role in the maintenance of disordered patterns of behaviour. Whitney and Eisler (2005, p. 577) capture the way in which a family can be affected:

“The impact of the illness on the family is immediately evident…just as issues around food, eating and weight dominate the sufferer’s thoughts and behaviours, food may also take a predominant role within family life and interactions”.

The national standards published by the NEDC include the importance of the role of the carer and family in the treatment of an eating disorder. Family Based Therapy (FBT) sees parents and care-givers as the primary resource for recovery and the most appropriate support for regaining a healthy weight and ending unhealthy behaviours.

Generally, FBT is implemented as an intensive, outpatient treatment model. FBT is separate to traditional family therapy which addresses interpersonal and relationship issues within a family unit, although this may form part of an FBT approach. While commonly used with adolescents, there are also new developments in the use of family and couple therapy models to treat adults.

While many forms of family and couple therapy are suggested as important in working with eating disorders, there are only a handful of family-inclusive treatment options that have been empirically evaluated.

The NEDC National Framework (2010) and Evidence Review (2010) both acknowledge that family oriented interventions are an integral component of any treatment model for children and adolescents with anorexia nervosa and that evidence in other uses of family based interventions is emerging.

The UK National Institute of Health and Clinical Excellence guidelines reviewed all available research evidence prior to 2004 and concluded that the best outcomes for anorexia nervosa in patients under 18 years of age were obtained from family therapy (NICE, 2004).

The Journal of Family Therapy special edition includes a methodological review of family-based treatment in the last 25 years (Downs & Blow, 2013). Overall they found studies of family-based treatments for eating disorders to be promising. Particularly promising were those using the Maudsley approach and adaptations for adolescents with anorexia nervosa who are still in the early stages of illness.

A meta-analysis conducted by Couturier, Kimber, & Szatmari, 2012indicated that behaviourally based FBT (or Maudsley Family Therapy) for adolescents with both anorexia nervosa and bulimia nervosa is superior to individual therapy at a 6-12 month follow-up. In addition, they reported that family therapy focusing on intervention with disordered eating behaviours should be recommended as the first line of treatment for adolescents with eating disorders.

A recent Cochrane review meta-analysis also examined family-based interventions for individuals of all ages with anorexia nervosa and concluded that remission rates were higher in family therapy compared with standard treatment. However, there was not enough evidence to determine whether family therapy had better remission rates than other types of psychological interventions.

The findings of the Cochrane review may have been influenced by the inclusion of both adult and adolescent participants and a wide range of family therapy models. Evidence is less clear on the outcomes of FBT for adults with anorexia nervosa, and those of any age with other eating disorders. There is some evidence that adolescents may have a better response to family interventions when compared to adults. Currently, the largest evidence base specifically relates to the Maudsley Approach; traditionally implemented with adolescents.

FBT holds significant promise for adolescents with anorexia nervosa and the growing evidence base for this approach to treatment is also developing a body of supporting research-to-practice initiatives. Further research and evaluation is needed in this area of practice, particularly as it relates to other eating disorders, different age groups and different family-based therapy models. Family based therapy is evidence based and should be considered as a treatment option for anyone with an eating disorder. No single treatment will be effective in all instances but this is a form of treatment that has promising outcomes for many and places the family as an integral component of the treatment team.

For further reading on adolescent family based treatment in clinical practice, please refer to some of the other articles included in the special edition of the Journal of Family Therapy:

Adapting family-based therapy to a day hospital programme for adolescents with eating disorders: preliminary outcomes and trajectories of change.

Multiple family therapy for adolescents with anorexia nervosa: a pilot study of eating disorder symptoms and interpersonal functioning.

Patients’ characteristics and the quality of the therapeutic alliance in family-based treatment and individual therapy for adolescents with anorexia nervosa.

Innovations in Maudsley family-based treatment for anorexia nervosa at the Children’s Hospital at Westmead: a family admission programme.

 

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by Dr Mark Warren, via FEAST newsletter.

What can adult treatment learn from FBT?

In the field of eating disorders, multiple studies have shown that Family Based Treatment (FBT) is the most effective method available to achieve successful weight restoration and maintenance after treatment is completed for adolescents. Unfortunately, specific treatments for adults have not been shown to have the same long term benefits as FBT. Clearly there are many variables involved in this data; however, there are elements to FBT that may point us to a better understanding of what happens for adults.

FBT has 3 distinct phases: refeeding, transition of control from family back to the patient, and addressing normal adolescent issues. All of this happens while the adolescent is in the (hopefully) safe confines of their family. For adults, intensive treatment often stops after refeeding and cessation of behaviors, which would be considered only Phase 1 of FBT. It often happens that an adult client is stepped down to a lower level of care from a hospital, residential facility, or partial hospitalization program once refeeding is complete. Step down may be indicated, as a lower level of care may provide more freedom and a chance for a more fulfilling life. The step-down may also be precipitated by insurance concerns or issues related to food, work, or family, as opposed to the completion of treatment. Unfortunately, a potential result of early step-down is that a slow transition to feeding oneself may not occur. Adult patients may find themselves having achieved a healthy weight and have strong motivation and commitment for recovery, but have decreased support around eating and have difficulty with their ability to generalize the skills they have learned in treatment.

FBT clinical experience suggests the treatment for an eating disorder may take years. After refeeding is done, significant external accountability, consultation, management, and therapy are necessary to maintain a healthy weight, motivation, and physical safety. Without a good treatment team and a supportive community maintaining recovery is very difficult. Our hope for any individual with an eating disorder is not only that they achieve goal weight, but that they achieve the ability to feed themselves and that they are able to fight against eating disorder thoughts and urges. There will be many bumps in the road, and many obstacles that may emerge. However, if a long term plan, which will likely extend many years, is developed, that will help patients eat well, have a supportive community, feel better about themselves, their bodies, and their ability to live they life they are striving for, health and recovery can be achieved.

____________________________________________

 

Dr. Mark Warren is the Medical Director for the Cleveland Center for Eating Disorders (CCED). His practice focuses on bringing the most up-to-date research into evidence-based care. 
He is also  a F.E.A.S.T. Advisory Panel member and recently was  voted as the “Best Doc,” appearing on the cover of the Cleveland Magazine. For more information about Dr. Warren, visit the CCED website .

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Sounds funny doesn’t it, but really they are. They can be war zones, deadly silences or just plain depressing. We take eating fore-granted in many ways, it just happens – no big deal. But to both sufferer and carer they become mountains and valleys that are mentally, emotionally and physically exhausting.

For the sufferer just trying to eat 6 times a day is a huge ask and so much emotion is invested into each meal. Fears, anger, trying to please, wanting to achieve, by the end of the meal it feels like they have been through a major washing cycle. Now repeat another 5 times. Imagine too if you can the screaming and self-hating voice in your head that does not let go, emotionally and mentally wearing you down. Some meals take so long to finish, the next one needs to be started. The small amount of hours between meals is taken up with either let down from the last meal and build up to the next meal. For those who have to prepare their own meals add extra pressure and exhaustion. Do I have enough protein, did I follow my meal plan, damn I missed the calcium …

For carer the exhaustion comes from emotionally sustaining your loved one, mentally staying alert and keeping conversation, distraction etc, watching for ED behaviour and if it is a war zone meal, just surviving and staying alive by the end is a feat.

For all round care and pressure release for both of you try to:

  • remember the ED is not your loved one and to separate behaviour
  • mistakes happen, we are all human and getting it right just doesn’t happen all the time
  • find special self care between meals (hair, face, massage, nails, walk, music, reading etc)
  • get some space between you both between meals if you need that at times
  • do things together (fun things) that don’t involve food to keep your relationship grounded
  • as both carer and sufferer you have the right and entitlement to voice concerns about the meals and what is going on, whether to each other (lovingly and gently) or to your support team

For carers some really good care points are:

  • share meal support around, not just one parent doing it all the time
  • if your loved one only feels safest with one particular parent, the other one could prepare the meals and clean up to share the load
  • if one parent just can’t handle the whole meal support, then DON’T FEEL GUILTY. We are all not all able to do some parts of recovery, there may be other areas you can help out in.
  • vent the exhaustion and frustration healthily – go down the back yard and yell, go exercise. Don’t take it out on your partner nor the one with the eating disorder.
  • get friends to do a meal support every now and then if your loved one doesn’t mind.

For us I ended up doing the lot. Sophie wasn’t at all comfortable with others coming in to do meal support and as you have all guessed by now my partner only created problems not helped them. Many other families run similarly, the female ends up doing a lot of the caring and ends up a wiped out mess. I crashed just before Sophie was admitted the second time to hospital, the timing for me was much needed. I was able to gain respite and pull myself back together ready for when she came home again.  Remember treatment facilities or hospitals not only provide much needed medical care for your loved one, but give families respite and the chance to rebuild and regroup. Use it wisely if you have this happening to your family.

Another research study has just been published about the long term depression on mothers of family members with eating disorders (particularly anorexia). Unfortunately I wasn’t going to pay $40 just for the privilege of reading the findings. But the point is very clear, long term fall out and health issues do affect the female population caring for someone with an eating disorder. It highlights that we need to be as mindful of our own health as much as the health of our loved one.

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