1. Can you give us some background on your family and let us know when you first realized there was a problem?
We consider ourselves to be a pretty normal Australian family. My husband and I are happy together and we have two rather wonderful daughters. Our elder daughter, who developed anorexia when she was 13-14, was a happy, clever, enthusiastic child who had shown no sign of emotional/psychological illness before the onset of anorexia.
When our daughter was 13 she started cross-country running and showed considerable talent for the sport. She was already playing representative netball. She started eating ‘more healthily’ for her sport and began an adolescent growth spurt. By the time she was nearly 14 we were beginning to feel she was a bit skinny and were concerned that she was not eating enough to meet the energy demands of her sport and training. We also noticed at about this time that she was becoming a bit withdrawn, short tempered and uncharacteristically preoccupied with her weight and looks. We felt a niggling concern but basically dismissed these changes as normal adolescent behaviour. Anorexia never even entered our heads.
After spending time together on a family holiday overseas however we really became aware of how little our daughter was eating. The first doctor and dietician we consulted failed to diagnose an eating disorder but a sports specialist who we saw in June 2004 did and we commenced treatment with him, a paediatrician, a counsellor and a dietician immediately.
2. How did you decide ontreatment/findyour Maudsley provider? Aside from Maudsley did you employ other interventions?
Despite working closely with this team our daughter’s condition deteriorated rapidly. The dietician would give her diets – none of which she could stick to. She seemed incapable of responding to her counsellor. At this stage we offered encouragement but did not monitor her eating. Most of the information we were reading at this time recommended to ‘not discuss food’, ‘not to enter into power struggles over food’ and ‘not to make her eat’. Her weight dropped, her diet became more and more restricted until she was only eating liquids, her health declined, her self-esteem evaporated and she became increasingly miserable. At a BMI of 13 she reached a point of barely being able to eat at all and on the brink of hospital admission her doctor suggested, as an alternative, we could try refeeding at home with the aid of a naso-gastric tube.
Under the supervision of her GP and with the support of a dietician we began supplementary tube feeding at night. Over the next 5 months, as her weight crept up, we weaned her off the tube and back onto real food. Her anorexia fought us tooth and nail without let up. She was desperate, miserable and almost uncontrollable.
When she reached a BMI of about 17 the tube was removed. Her MD withdrew from her case as she was at a ‘safe weight’ medically and he felt he had little else to offer. However she remained deeply anorexic. We sought other doctors and therapists but in our small regional city experts in eating disorders were thin on the ground. Several professionals we contacted tried different therapeutic approaches and included both antidepressant and antipsychotic drugs but nothing helped. No one we consulted thought that further weight gain would make much difference at this stage in our daughter’s illness. The nearest specialist treatment center for anorexia was over a 1500kms away. We were reluctant to send our terrified 14 year old that far away and stories of admissions, relapses and readmissions were not reassuring.
My husband and I had read about and could see merit in the Maudsley method but everything we read cautioned us about trying the approach without specialist support. We were in a fairly desperate state when we had the good fortune to find a visiting English child psychiatrist who was working for a year in our city. He was aware of and enthusiastic to try the Maudsley method. After an initial consultation with our daughter he confirmed that she was severely anorexic but thought her condition might improve with further weight gain. And so we began a second bout of refeeding.
It was a huge struggle for us all but when she had been at her healthy weight (BMI 19.5) for 6 weeks we started to see small signs of improvement – her depression started to lift and we began to have glimpses of the girl we used to know. Over the next months we helped her to maintain her weight and miraculously her anorexic rages become less frequent, she became much happier and more interested in life and began to engage in more social activities with her friends. Her distorted view of her body and of her own worth simply disappeared as did her OCD-like rituals and fear of food. She has been at a healthy weight now for about 10 months and is doing very well.
3. How did you accomplish re-feeding?
Developing ways to effectively refeed our daughter was a process of trial and error but these are the things that helped most.
We used a menu set by a dietician initially and later by ourselves. It was a program of regular meals and snacks. Every scrap of every meal had to be eaten. We used ordinary foods for her meals – bread, cereals, dairy, meat, fruit, nuts, oils and vegetables and added Sustagen or Ensure drinks to bump up the calories. When she moved to a maintaining diet the high calorie drinks were gradually dropped out.
We tried to use encouragement and distraction to help her eat but very often had to resort to saying something like this ‘We love you too much to let you starve. We want to keep you at home with us if we can but we can only do this if you stick to the program outlined by your doctors. You must eat all of this meal. Not eating is not an option. Either you eat here with us or we find a clinic/hospital and you will eat there.’
We read aloud to our daughter through all her meals for many months. This was a distraction for her and stopped us being excruciatingly irritated by her bizarre eating behaviours. My husband and I between us probably read aloud in excess of 100 novels during her illness – including ‘War and Peace’!
We learnt never to back down on a meal no matter what sort of a fight the anorexia put up or how long it took. If the food flew across the room we replaced it. We learnt the hard way that any wavering on our part just caused more fighting and upset at the next meal.
Whenever anorexia changed tactics we mounted a counter offensive. When anorexia made our daughter tamper with her naso-gastric tube we stayed with her during the night for the feed; when it made her throw up her meals we kept her in sight for at least an hour after eating; when it made her exercise in bed we took it in turns to sleep with her; when it made her self-harm we removed the tools and offered cuddles; when it made her cheat the scales we supervised her more closely before weighing time etc. Interestingly, once we stepped in and made anorexic behaviours (like vomiting after meals) impossible for a period of time they disappeared completely.
4. How did you talk to your child about anorexia, eating, recovery, and other related issues while you were refeeding? Do you have any coaching tips on handling your child's anxiety?
In the beginning we tried to reason with our daughter about eating, weight and self worth. After all, we knew she was a very intelligent girl with a quick and rational mind. We soon learnt however that any discussion of anorexic issues inevitably ‘fired up’ our daughter’s anorexia. The anorexia harnessed her excellent verbal skills and we found ourselves locked into intense arguments that achieved nothing and caused much distress to all involved. Slowly we learnt that she was no longer capable of rational thought about these things and that arguing the toss with her anorexia was worse than useless. As time went on, we tried (not always successfully as the neighbours will testify!) to engage the anorexia less and less.
Occasionally after intense periods of anorexic rage and distress our exhausted child would allow us to cuddle her. Sometimes we would talk to her quietly at these times counteracting the endless barrage of negative messages the anorexia spewed into her head. Sometimes we think the girl inside was a little reassured by our words but at other times they just incensed the anorexia again and the battle was rejoined.
It was very important for us to separate our daughter from her anorexia as much as possible. We tried to reassure her that we knew that her feelings and behaviour were a result of an illness that was not her fault and which she could not control. Unfortunately, until she was well on the way to recovery our daughter was incapable of making this distinction herself. However this attitude allowed us to accept much of her difficult and worrying behaviour.
5. What practical problems arose and how did you handle them? School, jobs, etc.
My husband and both work from home which was very helpful for refeeding. I virtually stopped work for the 2 years of our daughter’s illness and my husband’s work was seriously disrupted many times. Very little else was done around the house during this time. Keeping our daughter eating, dealing with her distress and rage and minimising the disruption in our younger daughter’s life were all consuming.
In the early part of our daughter’s illness when she was very sick and was having night feeds with a naso-gastric tube she could not attend school. As her illness progressed, she developed a severe social phobia and would not leave the house unless forced, so we undertook home schooling with her for about 18 months. We found one of the strangest things about this illness was how well she managed her schoolwork when the rest of her life was so difficult. How could she simultaneously maintain A’s in all her science subjects and yet argue with total conviction that she didn’t need food to live? When she returned to school she rejoined her friends in the appropriate year level and has not looked back since.
6. How did parents work together to see Maudsley succeed?
Fortunately my husband and I were able to put up a fairly united front against the anorexia. We shared a common view of our daughter’s illness and of the treatment approach. My husband shared the duties of refeeding as much as his work commitments would allow. We talked, cried and made each other laugh when things were tough. Over time we learnt when to step in and take over if one or other of us was feeling overwhelmed. We tried not to judge each other harshly when either of us ‘lost it’ with our daughter – which happened despite our best efforts.
7. What was the greatest challenge for you? For your child?
Wow – where do I start. These were the really hard things:
Seeing our daughter transformed from a bright, joyous, out going child to a pale, emaciated, haunted being living in terrible fear, pain and misery. Our daughter’s anorexic demon convinced her that she was a truly hateful and vile person who didn’t deserve food or joy in her life. While she was ill our daughter eliminated all pleasurable activities – she wouldn’t let herself read, play games, do crafts, sing, play music, chose a program on television, see friends or anything else she used to enjoy.
Knowing that to help our daughter recover we had to make her do the two things she feared most – eat and gain weight – again and again and again.
Trying to keep sight of our real daughter while coping with the anorexia induced physical and verbal aggression towards us and her self-harming and dangerous behaviour.
Maintaining our faith that this would work – that with love, nutritious food and weight gain our daughter would return.
And finally, handing back control of her eating to our daughter. Learning to trust in her judgment again and coping with our own fears of a relapse.
8. How did you go about re-establishing independent eating? How are things going now?
After our daughter returned to rationality she grasped her recovery in both hands. She became very determined to eliminate anorexia from her life and to take over her own eating and weight control. Long before we felt certain she was ready, our daughter was demanding to make her own food choices and asking us to trust her. Needless to say we were initially very suspicious of this. Her recovery was so new - how could we tell if this really was our daughter talking or just anorexia shrugging on yet another new guise ready to fool us again?
Our daughter’s therapist felt she was ready for this step so we gradually supervised less and less of her eating. For some months now our daughter has been managing her own eating entirely and monitoring her weight with her therapist. There have been a few wobbles but she has managed to get back on track without our assistance. Her therapy sessions are now confidential and we are no longer told her weight. Her Dad and I have struggled with this a bit but are slowly gaining confidence in her recovery. She is keen to return to cross-country running next season and is confident she can manage this and keep the anorexia at bay. We will remain discreetly watchful and ready to step back in if needs be.
9. What advice would you give to families starting out?
Don’t wait. Find good professional help for your child. A minimum requirement is someone who blames neither you nor your child for this illness and who will involve you in your child’s treatment.
Understand that your child may not be capable of ‘choosing’ to recover while she/he is in the grip of anorexia. Our daughter never expressed any desire to recover until her rationality had completely returned several months after achieving and maintaining a healthy weight.
Ensure that you refeed to a weight that is truly healthy for your child. Don’t settle for anything less than this. Help them to maintain that weight to give their physiology and brain chemistry a chance to adjust back to normal.
If your child expresses anger and hatred towards you during refeeding try to understand that it is the disease making her say and feel these things. Our daughter screamed her hatred of us for many long months but the love fully returned with rationality.
We learned that our daughter's anorexia really fired up, making life for her and us much more difficult if:
• our daughter had anything to do with the preparation of her food;
• she was given more than minimal involvement in preparation of her eating/exercise program;
• she learned of her weight (her GP weighed her ‘blind’).
Try not to argue with the anorexia. Be loving but firm about eating. The expression ‘give it an inch and it will take a mile’ could have been written for anorexia.
Be patient. Emotional recovery often takes much longer than physical recover. We saw very little improvement in our daughter’s mental state until she had been at her healthy weight for at least 6 weeks and it was a further 4 months before she could manage her own eating without anorexia forcing her hand.