What are the specialist treatment options

Each case is different and there are many different treatment options. What is clear is that the earlier anorexia is recognised and treated, the quicker and less painful the route to recovery. Most patients may be successfully treated as out-patients, using some form of counselling approach and lots of family support. Depending on where you live and your son's physical and mental state your GP might refer your son to a:

• paediatrician

• child and adolescent psychiatric or mental health unit.

Paediatricians are medical doctors who specialise in diagnosing and treating illnesses in children and teenagers. The paediatrician will be able to give your son a thorough check-up and assess whether his eating disorder has caused, or is likely to cause, any medical problems. The paediatrician can also carry out a wide range of other tests to rule out any other illnesses. Once the paediatrician has diagnosed anorexia he is likely to refer your son to a child psychiatrist for further assessment. If your son is very ill he might recommend an emergency in-patient admission.

Child and adolescent psychiatric or mental health units specialise in dealing with psychological and behavioural problems in children and teenagers. You and/or your son might feel embarrassed about going to a psychiatric unit, but you should just try and view it as seeing another specialist doctor. If your son had a bad knee you would see a knee specialist. If he has psychological problems with eating then it is appropriate that he is seen by doctors, nurses and therapists trained in psychiatry and psychology. At this stage you and your son might meet with several different medical professionals and it can be very confusing. Each might have a different role to play in your son's assessment, treatment and recovery. In the course of your son's treatment you are likely to come across the following different types of professional:

• Child psychiatrists. These are medically qualified doctors who have specialised in the diagnosis and treatment of mental illness in children. A consultant psychiatrist is the senior member of the psychiatric team with overall responsibility for a patient's assessment and care.

• Psychiatric nurses. These are nurses who have specialist training in mental health. They work with hospital in-patients and with patients attending day centres and psychiatric units.

• Community psychiatric or mental health nurses. These are psychiatric nurses who work in the community rather than in hospitals. They may be attached to GP's surgeries, community mental health teams, mental health centres or psychiatric units. They may also visit your son at home. Their role includes offering emotional support and helping your son to explore ways of living with his issues around food. They can help with anxiety management techniques and can administer psychiatric drugs if appropriate.

• Psychologists. They have specialist postgraduate training but they are not medical doctors and do not prescribe drugs. They are highly trained to deal with human emotion and behaviour and can help with a variety of problems including eating difficulties, behavioural changes and depression. They will often suggest the therapy programme that they think will best suit your son's individual needs. This is likely to include individual therapy with the psychologist plus group therapy and a range of other therapies. The main types of therapy on offer are described in the next chapter.

• Therapists. They are trained to listen and will have a formal qualification in their chosen area. This might be psychotherapy, family therapy, cognitive behavioural therapy etc. The main aim of therapy is to give the patient time and space to explore important issues in their lives and to consider any changes which might be useful.

• Dieticians/nutritionists. They will offer your son (and you as carer) specific help with his diet. This may involve keeping a food diary or the dietician may provide you with specific diet sheets. It is important that you follow the dietician's advice carefully. The dietician will seek to re-educate your son about healthy eating and how much he needs to eat to achieve a reasonable weight. Some dieticians are more proactive than others are, but if you do have access to a good dietician it is important to try and establish a good working relationship at an early stage. An experienced dietician can help your son overcome some of his problems with food and can help you construct a healthy diet for him that he will be willing to eat.

You can see from the above list that your son is likely to be seen by a range of professionals. A psychiatrist, nurse, therapist or clinical psychologist might undertake counselling and therapy. As long as the practitioner is adequately trained and experienced in dealing with eating disorders, it doesn't really matter what their title is.

Out-patient treatment might be undertaken at your local hospital, a Child and Adolescent Psychiatric Unit, your local health centre, a specialist day centre or at home. It depends on the location and availability of the doctors, nurses and therapists involved in your son's care. If his mood and weight start to lift, these are good signs that his treatment programme is working. If his weight continues to fall and/or his mood deteriorates then you should seek an urgent appointment with his consultant psychiatrist to consider altering his treatment programme. In any event you should have access to your son's professional team and there should be regular meetings scheduled to discuss progress. Don't be shy of asking questions or giving your opinions on how well or badly your son is doing. The medical team only sees your son during the day and for specific sessions. You are the only person who sees the whole picture and your input to his treatment programme is extremely important.

In-patient treatment is also available, both within hospitals and in independent specialist units. In-patient treatment is normally suitable for patients:

• who have suffered an extreme and life threatening level of weight loss

• where the condition has become deeply ingrained over a number of years and perhaps has a significant obsessional element

• where the patient is suffering from other disorders which may be life threatening such as suicidal tendencies and self-harm.

A main priority is re-feeding, with appropriate therapy following on when the patient is stronger. In-patient treatment is often a lengthy process lasting anywhere from 3 to 12 months.

If your son is admitted to an in-patient unit he will be treated by the same group of professionals as mentioned above. Progress might seem slow at first, but remember that your son has been admitted because he is very ill. Joe had to sit quietly for a month and even then he was only allowed a tiny amount of activity every day. He was very frustrated and angry, but if he had been more active he could have had a heart attack. In the second part of this book I describe in detail Joe's experience as an in-patient. Different treatment centres might adopt slightly different strategies but the overall aims are always the same:

• to achieve a reasonable weight for age and height

• to overcome the psychological issues with food and eating

• to resolve any other issues with anxiety and depression.

The advantages of your son being treated as an in-patient are that:

• his diet can be strictly controlled by the professional staff

• a wide range of therapies are available on a daily basis.

Many anorexics feel relieved when they are admitted to an in-patient unit. They no longer have to fight with their parents over every meal because an independent party has taken over. The anorexic voice doesn't seem so dominant in this situation. The medical staff at the unit have authority and it is rare for anorexics to refuse to eat. Many still have difficulty eating but they will at least sit at the table and try.

Whilst every in-patient unit is slightly different there are many things that are common including:

• An expectation of weight gain. Most units aim for a weight gain of between 0.5 to 1 kg per week. Your son's re-feeding programme is likely to include a build up phase in which he is given fairly small portions. This is to ensure that he doesn't adversely react to suddenly having much larger meals. His heart has been weakened by a long period of starvation and it is important to build up slowly. After several weeks it is likely that your son will be on a diet of over 3,000 calories per day. A dietician will work with the staff on duty to adjust his diet as necessary to ensure a reasonable and sustainable increase in weight.

• Target weight. At some stage your son will be given a target weight. Most units use boy's weight charts similar to the ones that are used to check the weight of a growing baby. These are often also referred to as centile charts. Joe's weight plummeted from being above the 50th centile to below the 9th centile in a few months. The target is likely to be set by the dietician involved in your son's care and it will take into account things such as how much he weighed before he was ill, how tall he is and his build. A small 12-year-old boy with a slight frame would be given a lower target weight than a tall 12-year-old boy with a large frame. Once your son has reached his target the unit will adjust his diet in order to stabilise his weight.

• Predicted length of stay. How long your son stays in the unit after this target has been reached depends on a wide range of factors including his mental state and how he has responded to therapy. Some units apply a formula to predict length of in-patient stay. For example, this might be one week per kg to be gained plus two weeks after that to stabilise weight. A boy who needs to gain 10 kg would have a predicted length of stay of 12 weeks. Of course if he didn't gain the weight or was still having difficulties with eating he would be expected to stay longer. Some units like to keep patients longer than others do, in the hope that a more lengthy stay will reduce the risk of relapse. At Joe's unit progress was monitored on a week by week basis and there was no specific prediction about length of stay. You should expect your son to stay at least three to four months. More complex cases might require much longer stays.

• Availability of therapies. To start with it is very likely that your son will be too weak and confused to be actively involved in therapies. However, as he gets stronger his medical team will put together a programme of therapies that they feel will suit your son. Joe didn't participate in therapy in any meaningful way for the first month of his admission. After that he participated in a wide range of therapies including one-to-one psychotherapy, group therapy, family therapy, cognitive behavioural therapy and art therapy.

• A keyworker. Most units will allocate one member of staff to be responsible for your son's day-to-day life on the unit. Very often this will be a psychologist who will be available as often as possible for your son to talk to. The keyworker should also be the parent/carer's main point of contact.

• Regular updates on progress. Most units will have a formal system for updating both the patient and their parents/carers on progress. At Joe's unit this was done on a weekly basis. Patients often get very anxious on update day and it is important to try to be reassuring even if your son has had a bad week. Each Wednesday Joe would be weighed and have a review discussion with his keyworker. Objectives would be set for the coming week. We were given feedback at our evening visit.

• Professionals' meetings. These are likely to happen at key stages in your son's treatment programme. All of the medical staff involved in your son's treatment will attend and it is common for one of your son's teachers and GP to be invited as well. These are stressful meetings both for the patient and the parent/carer. Key decisions will be made about ongoing therapy, permitted levels of activity, reintegration back into school, home visits, whether drugs might help the recovery process, timing of discharge etc. This is your main opportunity to really find out how well or badly the medical team think your son is doing.

• Parents/carers' support group. Most units will either run a parent/ carers support group or be able to put you in contact with one. These are invaluable as they give you an opportunity to share your experiences with other families who have gone through, or are going through, similar situations. You can discuss the stresses and strains and the inevitable feelings of despair when trying to look after a sick child. You can also talk about coping strategies and share practical tips for dealing with what often seem to be impossible situations. Most importantly you can talk about recovery and hope for the future.

• Schooling. Most units will either have their own teaching staff or will send their patients to a day centre near by. Some work will be obtained from the patient's school and some general sessions will be organised. The idea is to keep patients ticking over. To start with they are unlikely to participate in lessons as they are too ill. When they do start to participate school hours are likely to be fairly short to ensure there is enough time for therapy sessions, basic medical checks to be carried out and other activities.

• Activities for patients. Most units will organise activities for patients. Day-to-day activities, which all patients can participate in, might include arts and crafts, singing and drama. Many units also offer more strenuous activities such as swimming, badminton, rounders and aerobics. Patients recently admitted are unlikely to be allowed to participate in such activities until they are much stronger although different units have different views on this. At the weekends and in the school holidays other activities such as trips to the cinema, a theme park, the ten-pin bowling alley or the seaside might also be on offer. At Joe's unit they took a cautious approach with regard to activities. Joe was not allowed to do any strenuous activity or to go on the outside trips until he had almost reached his target BMI. He found this extremely frustrating, but he had to learn to understand how sick he had made himself. Too much activity at an early stage could have triggered a heart attack. Most units will also exclude patients from activities if they are failing to gain weight or are thought to be exercising in secret.

• Home visits. Most units will discourage home visits for the first few weeks. It is important for the patient to settle in at the unit and get used to the strict regime. Once he is settled and complying with the unit's boundaries then home visits can be considered. Joe didn't come home at all in his first month at the unit. After that he only came home for a few hours at a time and he had to return to the unit for his meals. Gradually over the course of the second month he was allowed longer periods at home, introducing meals and finally staying overnight. Joe didn't come home for a whole weekend until he had nearly reached his target weight.

• A word of warning. It is very distressing for the whole family when one of its members goes into a residential unit for an unidentifiably long period of time. It takes time for everyone to adjust and the first few weeks are likely to be very difficult. It is not at all uncommon for a young person to become extremely distressed. Having happily gone along to the unit, he quickly finds out there are very strict rules and regulations. There is no choice about food and he has to sit with the other patients and eat everything that is given to him. Suddenly he realises he would prefer to be at home and he will try anything to achieve that objective. It is very common for new patients to ring home and make the following types of statement:

• All the staff hate me and are really horrible.

• I'm not like any of the other patients: you have sent me to the wrong place.

• I'll commit suicide if you leave me here a minute longer.

Being forewarned about this is being forearmed. Luckily we had read enough to know that such reactions were common. It didn't make the first few weeks any easier, but we were prepared for the emotional onslaught every time we visited or spoke to Joe on the phone. We could be strong and reassure Joe that we loved him very much and wanted him to get better. Staying at the unit was the best way of getting Joe back on the road to recovery.

In the UK there are both NHS specialist units and private clinics. Unfortunately there are many sufferers and not enough spaces to accommodate them all. If your son is very ill then your GP can apply for an emergency admission. This is what happened with Joe. In less urgent cases you might be able to get your son into a specialist unit on a daily basis. If you feel strongly that your son needs admission to a specialist unit don't give up. Keep taking him back to your GP child psychologist or paediatrician and explain why you think he needs admission. Document any deterioration you have observed in his physical and/or mental state and make sure your son's medical team are well aware of these changes. If you still don't feel your son is being given the appropriate treatment, then it is worth seeking a second opinion even if this means changing to a new GP

In-patient stays typically require a period of out-patient follow-up and aftercare to address the underlying issues in the individual's eating disorder, and to maximise the chances of avoiding a relapse. When Joe was discharged from his in-patient unit, he was transferred to the care of our local child and adolescent mental health unit. For the next six months Joe attended regular cognitive behavioural sessions at this unit, we all attended family therapy and Joe was seen by his consultant child psychiatrist every month or so. During that time Joe became much more relaxed about food, his weight rose steadily in accordance with his age and height, and his mood was good. Six months after leaving the in-patient unit, Joe was discharged from the care of the local child and adolescent mental health unit.

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