Dear ICED: My daughter just disappeared into herself

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

Dear ICED:  My daughter just disappeared into herself
By: Kim
NSW, Australia

My daughter started down the path to anorexia nervosa sometime mid-late 2009. I can say that now with hindsight and being able to recognize the symptoms. Compulsive, obsessive, perfectionism, almost hysterical outbreaks if something didn’t suit her, no desserts.  Something building but not showing itself in any real external way. You could have labelled it teenager behavior, highly strung or overly sensitive. She was 14, turning 15 in December of 2009, she is now 20.

At the beginning of 2010 she started to make changes to her diet. This is what first alerted me that something wasn’t right. We already ate healthy and ate as a family. She wanted to eat healthier, questioned what was in each food, refused all ‘junk’ foods. There was a pattern of foods questioned for health purposes suddenly disappearing off her diet even if the food was a ‘good one’. At first she was relatively calm, but as weeks progressed she would react over-the-top if any of the ‘forbidden’ foods were offered.

I first put her on the scales at home mid March and she had lost, but not a huge loss, not something to really worry about. But the intensity and difference in her was more than enough to say something was different.

By the end of April, she stepped up the process. All carbohydrates, fried food and sugar were now not allowed. Lunches were now only a yoghurt and fruit. Her weight by the end of April was now down more. I was now pushing her to eat, trying to break through what was going on. She was getting depressed, had outbursts of anger, and if angry refused to eat. It was like my daughter was disappearing into another parallel. She was physically present, sometimes seemingly herself, functioned at school and at home, but mentally and emotionally lived in another world.

Mid May she let slip her last period was in March. Her food portions were slowly getting smaller. The June long weekend was the crunch point. She was very down, ate very slowly and little. We were in the doctor surgery on the Tuesday afternoon. Her depressive state was also a concern. Thankfully the doctor scheduled weekly visits, I am very grateful he didn’t write Sophie off as a ‘teenage thing’. His notes prove he diagnosed Anorexia then.

June was mainly keeping Sophie busy on weekends as she was very depressed, enough to be suicidal. We had the doctor’s clinic emergency phone number on speed dial. She was angry, aggressive, unapproachable. Other times she would just cry and sob in your arms. She was totally lost. Her eating patterns become more rigid, portions smaller, there was real fear in her eyes and actions when ‘bad’ foods were given to her. And she just couldn’t eat them, was unable to even try. She would collapse into tears. Her weight plateaued underweight for a bit, then began the slide down that couldn’t be stopped. We had a counsellor for a while, but after a month she gave up. Said she didn’t know what to do and couldn’t reach Sophie. We were given a referral to a child psychiatrist but her appointments were so booked, we couldn’t get one until September. The doctor was the only lifeline we had in trying to save Sophie.

In July we went away for two weeks (with emergency plans in place), it was the worst holiday we ever had. Breakfast and lunch were now apples, dinner was a small serve of what we had, with a major amount of coaxing to eat. She didn’t drink anything except a glass of milk. She was very cold all the time, was slightly yellow, painfully thin. Her breath was sour, old people kind of smell. Her hair was beginning to fall out. When we got back she stopped eating completely. A glass of milk a day was all she was having. And we still could not admit her to hospital, as she was not the required low weight to do so. Her medical obs of blood pressure, temp and heart rate were also not low enough for admittance. Trying to force her to eat, and be the food police just didn’t work. Sophie refused to eat, refused to do anything. She would sit so close to the fire to keep warm. She now had the fine hair covering on several parts of her body. She smelt, a decaying, old horrible smell. It was so confronting. I used to be terrified to go up in the mornings to wake her, in case she was no longer with us. When sitting at the table with us, she would just lie her head down on her arms and just lie there. There wasn’t enough energy or interest to do anything more. But still she kept up her schooling with an intensive obsession.

In August, my daughter just disappeared into herself. No emotion, no fear, no anger, just a bare existence. Didn’t talk to anyone. She must have been in a lot of physical pain too but nothing registered across her face or emotions. Finally in mid August her medical obs failed. Her weight, temp and heart rate were low enough to cause her harm, and her blood pressure was dropping significantly. Finally we could get into hospital to save her. She barely raised a whimper when she was taken for admission. She seemed to be more content to go into hospital despite what that may bring, rather than she or us trying to save her. Her weight was now about significantly underweight, her temp was down to almost 35 and her heart rate in the daytime was in the low 40’s. In hospital we discover her night heart rate was getting down to 38 or lower. There were no beds in ICU so the children’s ward monitored her in their intensive care bed, pumped her with electrolytes, potassium, fluid, and didn’t give her a choice of eating by mouth, it was too late. Sophie was given a NG feed and a list of rules to abide by so she wouldn’t use any energy she didn’t need to.

For the next 8 weeks this where she stayed. The hospital experience didn’t heal the anorexia, it didn’t make her decide to recover. It just saved her medically. She collected a team to work with her once she left hospital. The anorexia changed and adapted to the new circumstances. It developed a rigid diet that Sophie would only eat for the next year. It developed new coping patterns, become physically and verbally aggressive. It controlled Sophie entirely, barely let my daughter come out and be seen. We had a brief month after hospital when Sophie was happy and seemed to be on the mend. Then the anorexia took over and buried her again. In 6 months she was back in hospital for another 9 weeks. And after 4 months back in hospital again for another week. This was her turning point, when she decided enough was enough and it was time to fight back. In her own words, it was like living in a horrible nightmare and she did not want to keep living that anymore.

From a treatment point of view, we used a very broken down form of the Maudsley Approach. FBT didn’t work great for our family dynamics and Sophie could not move from her safe foods. She ate the amount given, very very occasionally tried a new food but that was as far as we could get her. I prepared all foods and kept her out of the kitchen. After the 3 hospital admission, this is when she finally decided to widen her diet. It took a couple of years though to slowly introduce new foods and get her to be able to eat them regularly. Now she can intuitively eat or be flexible in her eating habits. It takes getting to full recovery to achieve this step though.

She had a team of five that were her support/medical team outside of hospital. It was after second admission that this team with the new dietitian really began to strongly hold Sophie and support her. She learned that they would not let her fall and would follow her to the end to keep her safe. We had a paediatrician, GP, psychiatrist, psychologist and dietitian. Each one as important as the other and all working together and in constant contact. The psychiatrist was the over arching lead.

From a family point of view, we all lived and had anorexia too. It is never just the person who has the illness that suffers. You all do. Our job was to get her to treatment, support her and to learn how the environment around Sophie was affecting her and what needed to change. We had to learn ourselves how to survive the stresses (hell) of the eating disorder, how to relate to it and to work against it. We had to treat our daughter on the front-line of combat to keep her safe and alive, until she was ready and able to take over the task herself and to always, always stay alert. It is still a learning curve, each phase of recovery requires new knowledge and understanding of just how an eating disorder lives, breathes and constantly re-adapts itself so it can survive.

It took her 5.5 years from start to finish to be pronounced fully recovered. The hope is this that recovery is real and attainable. But it’s not easy and treatment and support matter a great deal in this journey. Early diagnosis and intervention are critical, sticking with therapy long after weight is gained, being aware and putting in safe guards around daily life and routines are all key points for success. Learning what other comorbids and illness you may have also affect the journey to recover and how to stay recovered. Anxiety, OCD, depression, along with high functioning aspergers are my daughter’s lot in life. Learning to manage these successfully means slipping back into anorexia is avoided.

One day I hope my daughter will talk about it and understand what led her there and why. For now she is still blocking that part and doesn’t want to share her journey with anyone. It is still too raw, too frightening, too close.