Specialist help

The team at the child and adolescent mental health service took pity on us and decided to pass us on to the specialist eating disorder team for our region faster than usual. We were very grateful.

Ironically, I met the psychologist who helped us in the street a few days ago. This is a small city. I was glad to be able to thank her in person.

The eating disorder team has its own base in a fairly nondescript building in a fairly rough part of town, but it’s run by a world authority on the subject, the professor of child and adolescent psychiatry at a high-ranking university. That’s his academic work. He practises in the place where we live, about 50 kilometres away.

His team consists of at least one other psychiatrist, psychologists, a paediatrician and a dietician. Only he sat with us, but first he introduced the others who were behind a screen.

He went through some basic questions to build up a picture of where we are and how we function and quickly reached the decision that our daughter has anorexia nervosa. The team in the local hospital were pretty sure, but had carried out a series of tests to eliminate every other possible cause of quick weight loss, including Coeliac’s disease, irritable bowel syndrome, diabetes and so on.

With that confirmed, he said very seriously to our daughter: “This is a potentially life-threatening condition and we have to take steps to stop you from becoming very seriously ill.” Coming from him, it really seemed to register with her, I think for the first time.

We all learned lots from listening to this eminent man talk about anorexia. He told us it is a condition that is full of contradictions. Food is what will make you better, but food is what the sufferer fears. The child knows her parents love her and only want her to get better again, but as soon as a parent places a plate of food in front of her, she rails against it like it was poison. I’m sure everyone affected could list a thousand examples.

The professor also said that there are three strands that require attention in treating the anorexia. There is the psychiatric, emotional, psychological side. His team will work on that in their therapy programme. We as parents have to focus on what he called “behaviours around eating”. So, yes, it’s food, but it’s the buying of food, the preparation, the cooking, the sitting down together, the eating and the clearing up afterwards. The third strand, the physiological side of things, is a consequence of these other two. They will weigh and measure her and we are to maintain regular contact with our family doctor and return to the hospital in the event, God forbid, of any further emergency, but we are not to focus on temperature, weight and so on every day.

Behaviours around food, then. Well, the man satisfied himself that we are capable of feeding children. He asked us if either of our other two daughters was underweight. Fortunately they are not. That means we are feeding them properly. That means we can also feed our eldest daughter properly, as we have been doing for almost 13 years. “Do whatever you have to do to keep her eating a normal, healthy diet,” he said.

Gone are the half portions. Gone are the special exemptions from olive oil on salad and butter on potatoes. She eats what her sisters eat. We have to take the flak she throws at us and sit with her until she gets through the food. That’s our job here. Feed the child.

The psychiatrist measured her body mass index and said she was below the first centile; she was at 0.2. He explained this well. He said to her that if she was in a room with 1000 girls her age, only she and one other out of the 1000 would be as thin as she is. Then he said that he knew young women growing up do not like to look round a room and think every girl there is thinner than she is, therefore he is not going to ask her to get back to, say, 50, which is bang on the average. He is aiming for 25. So there would still be 750 girls in the room of 1000 that she would be thinner than.

In practical terms, this means she has to regain 11 kilos in around 22 weeks. Our next appointment is next Tuesday. We are hoping for extra practical advice in how we can manage behaviours around food to make sure we get on the road towards that target. The dietician will be more involved.

The professor was very human. He told our child: “You’re life has just got a little bit off-track. We are going to help you get it back on-track.” His voice was exceedingly gentle and kind when he said this. He also told my wife and me that he is also concerned about us, and about our other children. I was very grateful when he said that.

We are just pleased to be in the programme, to be starting out in the right direction under the guidance of the best in the business, available to us as part of our public health service. Thank God for the visionaries who set programmes like this up. I will never again begrudge a single cent I have to pay in income tax.

We are at the bottom of the mountain. We know as little about anorexia as we will ever know. We are as bad at managing the behaviours around food as we will ever be. Our child is as weak and under-nourished as she will ever. The only way is up.

Peace to all.

P.

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Assessment

Three days after our daughter came home from hospital, we took her to our local child and adolescent mental health service for assessment. This was the appointment we had been waiting for all summer.

The person who saw us was a psychologist. Her manner could have been less patronising, but she adapted as we went along, speaking more naturally to our daughter when she realised her level of intelligence and articulacy (no boast intended).

The main things to come out of this session, which disappointed our daughter because she had been hoping for much more definitive and practical guidance on what we need to do to manage this condition day by day, were the suggestion that all-or-nothing thinking may have played a part in her succumbing to anorexia and her recommendation that our local eating disorder service take up our case.

All-or-nothing thinking means that if anything (a friendship, an outfit, a meal, a day, an outing, a school) fails to tick every box, it is worthless. In other words, in the eyes of someone indulging in all-or-nothing thinking, everything in everyone can only be either perfect (unlikely, impossible even) or useless. If everything is useless, you’re bound to get a bit down.

The psychologist told us that normally a lengthy, multi-disciplined interpretation of the result of her assessment would be necessary before determining the best next step. She seemed to see quite clearly that our daughter was anorexic and pushed the move to the next stage through quickly.

Our first appointment with the eating disorder specialists will be the subject of the next post.

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Hospital

Our daughter started back at school for the new term on Thursday, 2 September. The next day, she said she wanted to stay behind for a band practice (clarinet), which meant my wife had to go and pick her up at 5.30 pm. Unhappy with how the child looked (she was cold and weak), my wife took her straight to the doctor’s surgery. She managed to secure an emergency appointment, but only after losing her cool a little bit. Fortunately, the same doctor who had given us a referral was on the premises and he agreed to take a look.

He had the results of a previous blood test and said they were all right on the whole, with only one of the kidney readings giving him any concern. He took our daughter’s blood pressure (her arm was almost too thin—a very painful thing to have to write) and was alarmed to find it around 40. Her temperature was very low too, around 34 degrees Celsius. His advice was for us all to have a quiet weekend and to try to recharge batteries a little.

I got home at 7.00 pm and my wife was on the phone. The doctor had called the house because he had changed his mind; he wanted us to take our daughter straight to the paediatric unit at the local hospital. They checked her blood pressure and temperature again and decided to keep her in because her heart-rate had gone down to 30 and her temperature below 34.

My wife stayed in the hospital, naturally. I had to take our two younger children out into the night to take some clothes and toiletries down there, getting home at 9.30 pm. It was all very distressing for the children. We are going to have to pay much more attention to our other two, because this is proving to be very hard on them.

After a night in hospital, our child’s temperature had gone back up to over 35 and her heart-rate to over 50. The excellent medical team supervised her eating breakfast, lunch and dinner and checked her over again before saying she could come home on the Saturday night. We were all relieved. The hospital team said we could return there any time. We were very impressed.

The next day, Sunday, was a tough one. We went to Mass in the morning, but didn’t really venture very far after that, so the day dragged a bit, which is very frustrating for our suffering child. She wants to be on the move the whole time, clearly because the condition drives her to use up energy (energy she doesn’t have). If she sits or even stands still, something in her brain tricks her into thinking she is being lazy, leading to anxiety and a bit of self-loathing. Comments such as, “I don’t want to be me”, have been extremely distressing for us to hear.

The doctors said she could return to school on the Monday, and she wanted to go (to stay busy). I had to phone before lessons started to explain to one of the senior teachers what had happened over the weekend. She was very good and promised to keep a special eye in case there was any relapse. I work at home on Mondays and Tuesdays: every time the phone rang that morning, I was terrified, but we made it through the day and prepared for our appointment with the child and adolescent mental health service team the next day. I’ll relay what happened at that appointment in another post.

Love and peace to all.

P

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A blog about how anorexia nervosa is affecting my family

We are an ordinary family, married couple with three children, living in a prosperous European city with first-class medical care. In June 2010, we began to worry that our eldest daughter, who will be 13 towards the end of 2010, was eating too little.

At the start it was just that she was refusing second helpings and avoiding sweets and pudding (dessert) at the end of meals. Within weeks, she had cut right down on what she was eating at every meal and exercising compulsively. We approached our family doctor. Two of the doctors in the practice saw her during these initial weeks. They measured her at 1.61 metres in height and 44 kilos in weight. They suggested that we just keep an eye on things.

Before going on holiday, we had become much more worried. My wife said she wanted to pull out of the trip (which was to visit a relative of hers in North America). Back at the doctor’s surgery, we managed at the third attempt to see one of the senior partners. He offered good practical advice and was compassionate and supportive. He called to set up an appointment with the child and adolescent mental health service (CAMHS) in our town. We learned that it would take seven weeks for them to see us.

They were a long seven weeks. At the end of them, our child weighed 37 kilos. She was losing a kilo a week. Thank God she was extremely healthy when all this started.

I want to record what happened over the summer of 2010 and what has happened since our daughter returned to school at the beginning of September. Principally, I hope to find peace and release from putting thoughts and frustrations down in black and white. In the unlikely event that it helps other parents or other sufferers, that will be a huge bonus. I have no great expertise to offer and don’t think I ever will have, but I can tell you which things I have found to be of the greatest importance so far.

1. The child sufferes enormously, emotionally and physically.

2. Eating is difficult. Understood. But the way to become very ill very quickly is not to drink enough. For our daughter that is a minimum of one litre of fluids every day.

3. Seek help immediately. You have to go through the channels, but if you are in any doubt whatsoever, ask. Maybe this can be nipped in the bud. We weren’t able to do that and we feel we took action as fast as possible, but maybe others will be more lucky.

4. Hugs, mutual support, as much patience as you can sum up are essential.

5. Support between the married couple is of the greatest importance. The lowest days we’ve had have been the ones in which we have disagreed with each other. Great sadness is never far beneath the surface. How could it be when you’re watching your first-born child become dangerously underweight.

6. Tackling anorexia is not a job for amateurs. No, no, no.

7. Anorexia is an abysmal condition. I would not wish it on anyone.

If anyone looks in and is nearer the start of the journey than us, please feel free to ask anything. If I can answer, I will. If other parents with greater experience of anorexia than we have chip in with practical advice on how to manage the day to day, I will be deeply grateful. For professional medical help and advice on tackling the condition, I suggest you look elsewhere. I certainly shall.

To sum up, then, I want this to be about family life, not medicine. We are at the start of a long, difficult road. We have faith we will come through this and that our daughter will be well again. Please God.

Best wishes to all who work to help anorexia sufferers and their families put their lives back together. You are my new heroes.

P

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