Arms full of books and head full of ED

Arms full of books and head full of ED

Everyday when I pick Nellie up from school I see all her old friends walking out in a group laughing and smiling and walking freely and then about 100 metres away there is Nellie – tiny little Nellie with her arms full of books and her head full of ED. I grieve for her lost youth.
– Mother

Nellie, 16, was rejected from yet another eating disorder treatment centre this week. She is regularly placed in the ‘too hard’ basket. She lives with her parents in rural Australia but her story is universal – loving parents and siblings in need of a treatment team and health provider versed in knowledge and implementation of evidence-based treatment.

Nellie’s mother provides an insight into a week of living with ED:

‘Basically this latest treatment centre staff said that for them to even consider taking Nellie she would need to gain more weight; be able to eat a lot more variety of foods and also they would want her to want to change or get well and at this stage Nellie does not want to even consider getting better. She is not even in the pre-contemplation stage. She is sticking with her ED and that is that.  So we have been just shattered by all this.  We had put much hope in this latest treatment centre – that they would take Nellie and perhaps help her. The lady that rang us was of course very nice and sympathetic but said that she felt that Nellie would not benefit at this stage with them. She did understand that we were in a difficult situation but there was nothing they could do. Nellie of course was very pleased and relieved with the whole outcome as you would expect!

‘So that was Monday. On Tuesday Nellie decided that there was really no need for her to eat anymore or drink anymore and so she stopped and has since been very difficult.

‘She said that on Monday when I was describing her meal plan to the treatment centre staff she felt extremely fat and a pig and she doesn’t want to eat ‘all that food’ anymore. She also said that there is nothing we can do if she decides that she never wants to eat again and die. No hospital will take her and we cannot force her to do anything she doesn’t want to. She is so, so unwell. It is not only frustrating but just heartbreaking for us.

‘Last night, Nellie became so distressed that she took off from home for two hours and did not come back until dark. We were almost on the verge of calling the police.

‘Today I went to Nellie’s school as usual and ate recess and lunch with her but have been unable to get her to eat or drink tonight.When we confront her she gets very angry and aggressive and starts to hit and bite. Nellie needs to gain a lot more weight for her brain to benefit – instead she has lost three to four kg and this is affecting her greatly.

‘Anorexia is winning with everything. I believe that Nellie feels very let down by the latest treatment centre. Although she did not necessarily want to be admitted there, I do know that she would have gone if they had accepted her.  Anorexia would be loving the centre’s rejection of her.

Hiding food – a cry for help

‘Now…Can I seek your opinion on the matter of hiding food. I had a discussion with Nellie’s pediatrician regarding this and his thoughts are totally opposite to mine. I am very concerned that if I am right and the pediatrician is wrong then we have a real problem and it explains much about his treatment of her.

‘Lately Nellie has been hiding food.  But in saying that, she has not been hiding it very well as we have been able to find it quite easily. On Monday afternoon I found sandwiches and sultanas under her bed – in a very easy spot for me to find.  My interpretation of this find is that it is a scream from Nellie to us that she is not eating all her food and she wanted us to find out about this so we can be more diligent in watching her and thus helping her.  If she did not want us to find this I believe then she would have certainly got rid of the food totally out of the house.  When I told Nellie’s pediatrician about finding the food and how I felt so sorry for Nellie and realised that there is a small part of Nellie that truly wants to get better and we need to cling to that hope, he had a very different spin on the whole food hiding.

‘The pediatrician believes that Nellie is being very defiant and that her hiding the food in a place that we can find is just showing to us that she is not eating all her food and there is nothing we can do about it. He believes that she is behaving like a typical teenager that is doing what she wants to do and just throwing it all back in our face that we are unable to control her. He believes she is just rubbing it in our faces that she is not eating everything when she knows we want her to.

‘I really don’t believe this to be true.  What are your thoughts?

(Regarding the food under the bed: other children with AN exhibit this behaviour. When I was in AN’s grip, I hid food too – and my mother found it. I speak from experience only, but see the hiding of food as a cry for help from the child within. Like she is asking you to be strong for her and this is the only way she knows how to ask. – June).

‘Over the past three-and-half years Nellie has often done things right under our noses like this and we have always believed it is a scream to us for help. We believe that she cannot just blurt out and tell us she is not eating her food as that would be defying Anorexia but by hiding it she can tell her head that that is okay but the small part of Nellie would be hoping we would find it and then help her. Are we right in this thinking or totally off the page?

‘I remember one time that Nellie kept moving her blanket box, that sits at the end of her bed, out of her room.  We first thought that she wanted the extra room in her room to exercise so everyday we would move it back into her room and sure enough she would move it out again. This went on for weeks. In the end one night when Nellie was sitting beside me on the couch for a cuddle I could tell that something was bothering her as she was very fidgety. When I asked her what was bothering her and why she was so anxious she whispered very quietly in my ear “I go up and down on my box”. This was the reason she kept moving it out of her room – it was actually torturing her to have it in there as she had to climb up and down on it each time she entered her room and she didn’t want to. OMG once we knew this and we took it out of her room Nellie’s anxiety went down. To me this was just one small way Nellie was shining through and wanting to make a difference to her life and not live by Anorexia’s rules. This is what I am thinking is happening with the food also.

Treatment – giving up must not be an option

… Just returned from appointment with the pediatrician. We have been given some different medication to try to help alleviate Nellie’s anxiety until he can find a hospital placement ….

‘Some time ago I asked our pediatrician if he had heard of Professor Daniel Le Grange and he said he had heard of him but did not know who he was, etc. He didn’t seem interested which really disappoints me. I took one of Prof. Le Grange’s books on Maudsley Family Based Treatment into him. It is a popular book for treatment of eating disorders but Nellie’s pediatrician said he had never seen it before. I also had your book My Kid is Back with me and suggested it to but the pediatrician was blasé and again was not interested. Just another testament to me that this pediatrician really doesn’t get it.

‘From day one I haven’t had much trust or faith in Nellie’s pediatrician.  He is a shy and not very authoritative man. I tried to change pediatricians at our local clinic at one stage but the other pediatrician who is super fantastic with ED patients said he could not take her on as his patient. He said that he had treated a couple of very hard cases and was just not up to taking on another hard patient like Nellie. We were very disappointed at the time as I am sure we would be in a different position now if we had been given him from day dot.

‘I guess you can tell that I am pretty well nearly over all Nellie’s Team at present. Slowly they all seem to give up on her when the going gets tough. I get so disappointed. We are the only ones that fight for her but we can’t do it on our own. We need to be empowered and we need help to do this. We are really prepared at this stage to do what we have to do and go where we have to go to get some help for Nellie.

‘We want to work with a treatment team to start giving Nellie back some of herself that has been robbed by ED.  Even if we can shift or totally remove some of her rituals and so free up her time to be a 16 year old or even just an adolescent. To see her now just breaks my heart and I grieve for her lost youth.

Conference for Families, Carers and Sufferers

‘So pleased to hear that the At Home with Eating Disorders Conference is going ahead in Brisbane next May.  We are planning to be there.’